MCCORKLE LECTURES
2013
Challenges in Oncology: “Downstream Fluids for Thought.”
Assessment Guidelines and Standards
Mary Jo Sarver ARNP, AOCN, CRNI, LNC
Oncology & Infusion Services
Northwest Hospital & Medical Center/UW
Infusion therapy, like many things in the world of oncology, has morphed and changed over the years.
Changes are based on technological advances, the discovery of new therapies, and the availability of
multiple vascular access device options. Standards of care and guidelines have been slower in catching
up and some of the downstream effects of providing continuity of care present challenges and
opportunities in every health care setting. Novice nurses in infusion therapy frequently learn by the “see
one do one methodology” hands on mentoring at the bedside or in clinical settings post-graduation.
Seasoned nurses often learn of new products or therapies via short in-services, and reading materials, as
well as policies & procedures updates. As providers of care we dive in to meet the patients and care
facilities needs. Providing safe delivery of care within an expected time frame is often feasible until the
changes exceed the ability to educate during the course of a shift or capture everyone in a society where
full time status and localization to one type of patient or facility is increasingly rare.
Professionally, related to licensing and liability, nurses are held accountable to the standards set forth by
the infusion therapy experts. In 2010 and 2011, the “general” experts in infusion therapy, INS
(Intravenous Nursing Society) and CDC (Center for Disease Control) released new guidelines and
standards of care. ONS (oncology nursing society) participated in writing the INS and CDC guidelines
and updated their specialty specific guidelines related to vascular access devices and chemotherapy &
biotherapy administration. Healthcare providers that perform venipuncture and infuse via vascular
access devices must monitor & maintain devices, educate peers and patients, and are accountable for
knowing and implementing these updated standards and guidelines.
Patient safety is paramount, but where is the evidence showing a specific time frame related to
monitoring provides better outcomes? In infusion therapy, evidence is not in the form of a research
study, but tied to the number of suits filed and settled inside and outside the court room. In the United
States, infusion therapy related suits rank among the highest and most frequently settled healthcare legal
cases outside the court room. More often than not, staff directly involved in the event are rarely aware of
settlements unless the injury is severe and testimony is required. With bad healthcare outcomes, two
things are evident and rarely associated with a specific procedure and therapy.
First is the frequency of assessment and second is the patient’s ability to participate in care and decision
making related to education of the therapy or procedure being provided. Frequency and the content of
physical assessment have been ill-defined and challenging related to many things in healthcare. Policies,
procedures and guidelines specific to infusion therapy are a great example. Often guiding documents are
vague. For example, stating per shift, PRN (as needed), based on the access, based on the fluid being
administered, or periodically. Looking at the definition of a shift alone begs the question as to, is the
assessment time at four hours, eight, twelve, or twenty-four and is the frequency different dependant on
the patient or device?
Specific assessment time frames are ideally tied to the patient’s access, anatomy, infusion being
delivered and response to therapy. Standards and guidelines are generalized in an attempt to provide a
basis for “what the prudent nurse would do.” Experts in the field have taken patient factors into
consideration such as peripheral site location, ability to report and participate, prescribed therapy, health
care setting, age and established standards. Standardization allows for tracking of care and specific
documentation time frames providing a baseline for review of documentation and care provided.
Although not perfect, a safety net for improving outcomes and continuity of care by outlining what is
expected.
My first objective is to provide a brief over view of the new INS position paper: recommendations for
frequency of assessment of the short peripheral catheter site. The first position is related to the
assessment of the site when any IV is infusing. Next, I highlight several key points of the position paper.
Routine assessment: redness, tenderness, swelling, drainage, and/or presence of paresthesias,
numbness, or tingling at the specified frequency
Assessment should minimally include:
 Visual assessment
 Palpation
 Subjective information from the patient and if there is tenderness the dressing removed
and site visualized
 If there is tenderness at the site, the dressing may be removed to more carefully visualize
the site
Frequency:
a. At least every 4 hours
 Patients receiving nonirritant/non-vesicant infusions, who are alert/oriented and able to
notify the nurse
b. At least every 1 to 2 hours
 Critically ill patients
 Adults with cognitive/sensory deficits or receiving sedative-type medications and unable
to notify nurse
 Catheters placed in a high-risk location (e.g., external jugular, area of flexion)
c. At least every hour

Neonatal patients

Pediatric patients
d. More frequently: every 5 to 10 minutes

Patients receiving intermittent infusions of vesicants

Nurse should advocate for central access administration whenever possible

Peripheral infusion should be limited to less than 30-60 minutes

In addition to visual assessment of the site, a blood return should be verified every 5 to 10
mins during the infusion

Patients receiving infusions of vasoconstrictor agents

Nurse should advocate for central access administration whenever possible

Agents can cause severe tissue necrosis
e. With every home/outpatient visit

Peripheral infusions at home as overseen by home care or outpatient nurses

Patient & family education should include:
What to look for: redness, tenderness, swelling, or site drainage
To check site at least every 4 hours during waking
Ways to protect the site during sleep & activities
How to stop the infusion if signs/symptoms occur
To promptly report to the nurse an organization’s 24-hour contact number
Position Two: Intermittent infusions

Access site with every catheter access/infusion or at a minimum of twice per day
Position Three: Temperatures

Checked at a frequency according to organizational policy/procedure and more often
based on nursing judgment

The possibility of catheter associated bloodstream infection should be considered when
there is fever in any patient with a peripheral IV catheter even in the absence of site redness,
tenderness, swelling, or drainage.
Note that IV pushes are not addressed in the position paper and temperatures rely on organizations to set
time frames.
My second objective is to inspire new and innovative ways to assess central lines and expand our
physical assessment to include a history. The history includes “the life and conditions” the infusion
device is subjected to outside our limited time with patients. Often this approach reveals educational
needs for patients and healthcare providers to prevent infections and preserve the life of the line.
A general history should include:
•
When and where was the central line placed?
•
What type of central line is it and did you receive any paperwork?
•
Who takes care of your line?
•
What type of education did you receive related to potential complications and signs and
symptoms that need reporting?
•
What type of education did you receive related to protecting your line during everyday
activities?
•
Were you provided with a 24 hour number to contact?
Assessment should include:

Bilateral comparison of left to right upper extremities for chest asymmetry and/or contra
lateral circulation (may indicate a venous thrombosis, superior vena cava syndrome, prior
unresolved infiltration / extravasations)

Check for caps, ask “how frequently they are being changed or removed”? “Has one of
the caps ever fallen off”? “What did you do or would you do if it happened”?

Check for clamps and ask, “Were there ever clamps that were removed”?

Flush each lumen, does the patient complain of “whooshing, light headedness, jaw pain,
etc.”

If unable to flush, ask “when was the last time the lumen flushed without difficulty”?

Assess for cracks in the hub/valve/pigtail, leaking at the entry site

Ask “what would you do if fluid was leaking along the pigtail or catheter during flushing
or infusions”?

If it is a valved catheter, where is the valve located (by the hub or at the tip)?

Assess Dressing and catheter from wings to entry site

Note dressing change date and or needle access date greater than 7 days?

Is the dressing dry and intact?

What is the patient doing to keep the dressing dry during or after bathing?

Is there taping around the boarders or skin irritation?

How and where is the catheter secured? Stat lock, steri strips, sutures

Is there gauze under the dressing? If so, how often is the dressing being changed?

Is there a bio patch? Is it applied correctly?

How much of the catheter is exposed? Has it migrated in or out?

Is the catheter under the adhesive portion of the dressing? What are they using to remove
adhesive off the catheter?

Entry site

Erythema

Discharge and/or drainage

Pain with palpation

Pain with ROM
In summary, infusion therapy devices, whether peripherally or centrally located, serves as an access to a
patient’s bloodstream and delivery system for fluids, medications, blood products and or nutritional
support. Often, infusion therapy devices have been defined as the patients life line based on the potential
to save a life. The other side is the potential to cause secondary complications or death during insertion,
improper maintenance and or via infection. Currently there are over one hundred and fifty different
types of devices on the market. The association for vascular access offers a certification exam which
speaks to the complexities and knowledge base. Hopefully, my objective is met and this article provided
a stepping stone related to “fluids for thought” to be used in assessment, documentation and education of
the patient.
-----------------------------------------------------------------------------------------------------------------------------2012
The Pathway to Becoming a Professional Nurse
Nancy Thompson, RN, MSN, AOCNS
I was informed by the Symposia committee that I had been selected for the 2012 McCorkle Lectureship award on a
beautiful autumn Saturday morning that just happened to be my 50th birthday. The timing of the award prompted me
to reflect on my life and career which in sharing with you, I hope will help you to reflect on your own nursing
journey.
I was not one of those little girls who always wanted to be a nurse. My parents were both school teachers and I
probably thought I’d be a teacher too. But in my teenage years, my rebellious side made an appearance and I decided
there was no way I was going to be a teacher. Now in my role as a nurse educator, I spend a good portion of my time
educating nurses and patients so I became a teacher after all. Which lead me to realize that we have to Celebrate
who we are.
Each of us brings our personal backgrounds, gifts, experiences, and personalities to our nursing practice. Rather than
rebel against it, as I initially did, we ought to celebrate the diversity it brings to our profession and to our patients. I
remember learning in nursing theory class about the “therapeutic use of self”. It is defined as the “the ability to use
theory, experiential knowledge, and self-awareness, and to explore one's impact on others”. (Miller-Keane
Encyclopedia and Dictionary of Medicine, Nursing, and Allied Health, Seventh Edition. © 2003 by Saunders) The
“therapeutic use of self” doesn’t mean sharing our personal lives with patients but it does mean bringing the essence
of who we are to our nursing practice. This provides depth and sincerity to our nursing practice.
I considered several other health care related careers but nursing is the only discipline that truly treats the whole
person. As Wikipedia states;
“Nurses care for individuals of all ages and cultural backgrounds who are healthy and ill in a holistic manner based
on the individual's physical, emotional, psychological, intellectual, social, and spiritual needs. The profession
combines physical science, social science, nursing theory, and technology in caring for those individuals.” (Wiki)
I remain happy with my choice of nursing and still believe that treating the whole person is one of the greatest gifts of
the nursing profession.
I graduated from Montana State University with my nursing degree, moved to Arizona and accepted a nursing
position in Sun City, Arizona at Boswell Memorial Hospital. Over the next few years I learned how to be a nurse and
I was introduced to two of my career nursing interests. The first of which was Gerontology.
Sun City is a combination of people from all over the country who have moved away from their families to retire in
the southwest and most of our patients were in their 70’s. I facilitated a cancer support group there and became very
fond of these people who shared their lives with me and with each other. This older age group met their cancer
diagnosis with a lifetime of experience. Some had learned much from their lives, had acquired wisdom and
developed inspiring life philosophies and coping skills. And some of them were angry, bitter and lonely. As we age,
our personality characteristics tend to become accentuated as we are shaped by our responses to life experiences.
The older people who were wise and generous had learned life skills and grown from the experiences life had thrown
their way. Those people taught me to “work on becoming the old person that I want to be”. We have a choice.
We can become bitter and angry or we can become thoughtful and generous, and it largely depends on how we
respond to our life challenges now.
The second nursing interest I developed at Boswell Hospital was oncology nursing. There are probably as many
reasons for choosing oncology nursing as there are oncology nurses. I was fascinated by the science of oncology and
I enjoyed the IV skills but it was the depth and openness of the patient to nurse communication in oncology that
captured my heart. For my psychiatric nursing internship in school, I completed Hospice volunteer training and was
assigned a patient. I loved the conversations I had with my Hospice patient. She told me about her life, her regrets,
her accomplishments and her fears. When people are in crisis, they talk about who they really are and what they truly
value.
I love this quote out of the Hospice handbook I received in my Hospice training. It is a child’s mother describing her
daughter’s death.
“But my little girl did have a message for everybody here: the only thing when the chips are down that really matters
is kindness. You can spell it anyway you want. Some people say love, some say compassion but when you act it out,
what is it, its kindness, and that’s the only thing you can give. My little girl didn’t need any more needles, any more
tests or anymore anything. What she did ask was for me just to be with her and hold her, and that’s the message,
when the chips are down what else have you got – its one human being communicating with another.” (A Hospice
Handbook, anonymous)
I cherish the privileged opportunity we have to share with others at this level.
While working as a geriatric oncology nurse, I attended every available education program regardless of the topic. I
learned a lot about gerontology, about nursing, and about various other medical conditions.
The Oncology Nursing Society refers to this as Lifelong learning. It is a crucial step in our pathway that never
ends. As the ONS position statement on lifelong learning states;
Nursing as a profession is called to lead change and advance health. To meet this challenge, nurses must practice a
commitment to lifelong learning. Lifelong learning is the notion that learning occurs along a continuum from
elementary and secondary education to undergraduate and graduate education, lasting throughout the end of one’s
career. (Oncology Nursing Forum, (39) 2, March 2012, pg 127)
Lifelong learning keeps us inspired and motivated as nurses. When you are bored with the conferences that you
usually attend, choose a conference of a different discipline or non-oncology to gain a new perspective on your
patient population.
After a few years I registered at Arizona State University for graduate school. There I learned critical thinking,
writing skills, systems theory and the value of the literature. But most importantly, I learned community health.
Health, including oncology, starts in the community. Community health includes cancer prevention, health care
policy, access to care, lifestyle choices and behaviors. Up to this point, I had spent my entire career working in a
very specialized area of cancer treatment but had ignored the basics behind why people came to be in our clinic.
Florence Nightingale recognized the importance of community health. She stated,
“Every nurse should keep this fact constantly in mind - for if she allows her sick to remain unwashed or their clothes
to remain on them after being saturated with perspiration or other excretion, she is interfering injuriously with the
national processes of health just as effectually as if she were to give the patient a dose of slow poison by the mouth.”
(Notes on nursing, 1860, pg 93)
According to Florence Nightingale, providing basic community health and hygiene is an equally important nursing
function to giving oral chemotherapy. When PSONS commits to community service projects, we are nursing to our
most vulnerable patients and explicitly following the directions of Florence Nightingale.
I became involved with the Oncology Nursing Society, both in my local chapter and later nationally. I was asked to
share the Phoenix chapter presidency with another member. We didn’t know each other very well but we
enthusiastically attended the ONS mentorship weekend which incidentally ONS still offers today. We became
lifelong friends and converts to ONS! We were amazed at all that ONS had to offer and the vision of oncology
nursing that they had.
An important aspect of ONS is that you get out of it what you put in. My involvement with ONS has made me
lifelong friends, opened doors and opportunities I would never have dreamed of, and challenged my thinking and my
nursing practice. Graduate school was necessary for academic skills but ONS taught me how to be an oncology nurse.
My activities in ONS have provided me a network of oncology nurse colleagues from all over the country. Not only
are they wonderful friends, but they are a wealth of wisdom whom I rely on for help and assistance every day. Don’t
underestimate the value of your professional organization; they have a lot to offer.
ONS recommends developing professional mentors. I’ve had 3 really amazing nurses’ help guide my journey. The
first is Debi Boyle. Debi was more of a role model than a mentor and served as my vision for the embodiment of
oncology nursing. All I could think of the first time I heard Debi speak was “Wow, I want to be LIKE THAT!”
Then I worked with Betty Gibson in Arizona who taught me about public health and education, about working within
health care systems, and about being authentic with patients. Betty knew how to get things done in a system by
knowing what to say and, just as importantly, what NOT to say.
When I moved to Seattle, I met Linda Hohengarten who taught me how to be a clinical nurse specialist and so much
more. Linda taught me the importance of people and relationships and gave me the space to develop those
relationships and I will be forever grateful for that.
Maybe you have a mentor; maybe it’s time for you to BECOME a mentor. My mentor Betty said, “I like to think
that mentoring is really a 2-way learning opportunity.” Many oncology nurses have a lot of knowledge, both clinical
and professional that younger nurses would derive great benefit from.
I applied for everything ONS offered and was accepted into the ONS/BMS Ambassador 2000 program. It was
described as;
“A media outreach program that promotes the role of the oncology nurse to advance the public’s knowledge about
the supportive care of individuals with cancer. Through the dissemination of this information, the oncology nurse
becomes the advocate for individuals with cancer, the public, and the oncology nursing profession.”
Professional educators taught us presentation and publication skills, how to interact with the media and tips for
advocating in the political arena. At the end of the program, I had gained professional skills, fabulous new
colleagues, some great stories and a couple of valuable lessons.
First, Patients need nurse advocates. They depend on us to be their voice. We advocate for patients by questioning
medication orders, calling for ethics consults, locating financing, writing to legislators about health care issues,
requesting interpreters and so much more. This is a vital role of nursing.
Second, Supportive care is the core of oncology nursing. This is where we truly add value to cancer care. Patients,
who get great supportive care, stay on treatment, receive full doses, and experience the best outcomes and the highest
quality of life. Supportive care includes symptom management, palliative care, referrals to other members of the
team and patient education. It means taking care of the whole patient and is what oncology nurses do every day.
Another ONS program that I attended was the ONS/GSK Leadership Development Institute. The goal of this
program was to “prepare oncology nurses to LEAD the transformation of cancer care.” This program challenged
me to think about my career and my professional goals. The Institute faculty raised questions that I struggled to
answer:

Why did you go into nursing?

Why do you stay?

What makes it a good day?

How do you keep going at the low moments?

What is your personal mission statement?

How do you add value to cancer care?
In 2000 I became the coordinator for the Sun City site of the Alzheimer’s disease Anti- Inflammatory Prevention
Trial (ADAPT). This was a big move personally as it was away from Oncology but I was attracted to it as it was a
very prestigious trial, funded by the National Institutes of Aging, and coordinated through John Hopkins University.
Our Sun City team was small and new to clinical research studies of this magnitude. The other trial sites were all
prestigious universities with well-known reputations and mature clinical research programs. The staff from the other
sites literally snickered at our Sun City team and probably expected us to fail.
When I left that position, our site had the highest recruitment and had received a commendation for the quality of our
data. This experience taught me that; It’s not about where you work, it’s about the work that you do. There is a
lot of competition in health care among health care institutions with mergers and affiliations happening every day.
To us in the front line of patient care, none of that is important. It doesn’t matter if you work in a large prestigious
institution or in a small community hospital or clinic. What is important is your relationship with your patient, your
therapeutic use of self, and the supportive care you provide to patients every day.
Much as I enjoyed my clinical research experience, I missed oncology nursing and the Pacific Northwest, so I
accepted a position at the Swedish Cancer Institute as the outpatient clinical nurse specialist. Here I have learned
many things but maybe the most important of these is: Keep your eye on the patient and you’ll never lose your
way.
It’s very easy to get distracted by hospital politics, conflict between nurses and with other disciplines, budget
problems and short staffing. It’s easy to complain about our work environment and to forget our purpose and our
goal. But if we keep our focus on what’s best for the patient, we will never lose our way.
Dr. Albert Einstein, our medical director at the Swedish Cancer Institute retired in January. In his final note to the
staff he said,
“We can put together a number of ingredients to provide high quality cancer care but the ultimate essential
ingredient is a staff of committed dedicated individuals working together as a team to make sure that each and every
patient receives the best medical care and service possible. “
When we all work together as a team, advocating for our patients, providing supportive care, treating each patient as
a whole person I believe we change people’s lives, we change the health of our patients and our community, we
change our world, and we cure cancer. That is why I became a nurse, that is why I get up every day to come back
and do it again, and that is what makes it a good day for me.
It’s been a far more fulfilling journey than I had ever dreamed possible. I’ve learned more, accomplished more, had a
lot more fun, met the most amazing people, made wonderful friends, and hopefully I’ve added value to patients’
lives, to the community and to cancer care.
And I wish the same for all of you.
2011
Adolescents and Young Adults:
Adrift in the Sea of Cancer Survival
Linda Cuaron, RN, MN, AOCN
Cancer treatment for children and adults today may be viewed as a “sea of success” with greater
awareness, earlier detection, and discoveries in genomics and personalized medicine leading to the
potential for cancer to become a chronic illness. Significant progress is being made in the area of
clinical cancer research, surveillance and prevention, resulting in cancer incidence and cancer death
rates that have declined in the United States.
The CDC defines a cancer survivor as anyone who has ever had cancer, from the time of diagnosis
through the rest of their life. There are 12 million cancer survivors in the United States today, according
to new statistics from the Centers for Disease Control and Prevention (CDC) and over 28 million
worldwide. That is an improvement from the official US figure in 2007 of 11.7 million survivors, 9.8
million in 2001 and just 3 million in 1971. About half of the nation’s cancer survivors have had either
breast, prostate, or colorectal cancer and slightly more than half are women. About 7 million survivors
are 65 or older, and 4.7 million were diagnosed 10 or more years earlier. Earlier detection,
improvements in diagnosing cancer, and more effective treatment and follow-up are some of the reasons
for the increase in the number of cancer survivors over the years.
Adrift in the Sea of Cancer Survival
However, the story is not as bright for the adolescents and young adult (AYAs) cancer patients and
survivors of childhood cancer. Survival improvement trends show a worse prognosis for AYA’s
diagnosed today than 25 years ago. Survival figures for children who have had cancer have improved
by 1.5% per year for children younger than 15 and adults older than 50 years, but cancer survival has
improved by less than 0.5% per year in 15- to 24-year-olds. This is in contrast to statistics seen at the
beginning of the last quarter century when the diagnosis of cancer in 15 -29 year olds carried a more
favorable prognosis relative to cancer at other ages. That is no longer the case, and moreover, cancer
survival has not improved at all in 25 to 34 year-olds. This deficit is increasing with longer follow-up of
survivors. These deficits appear to be global, and not just seen in the US. Figure 1 depicts the stark
differences in 5-year relative survival for invasive cancer based on US Seer data from 1975-1997.
The world of traditional cancer care is well-developed with multiple organizations, cooperative research
groups, advocacy and supportive groups, and numerous sub-specialties. Similarly for pediatric cancer
patients there are defined research organizations, hospitals, specialists, and palliation and survivorship
programs. There is active work in genetics and genomics for adult and childhood cancers, but this is
limited for the AYA group.
AYA Cancer Survivors and the Newly Diagnosed
There are two groups of AYA patients that warrant concern. There are those who are survivors and are
at increased risk for medical complications and/or cancer recurrence, and those who will become newly
diagnosed during the ages of 15 – 29. It was reported at last year’s American Society of Clinical
Oncology (ASCO) meeting that long-term risks for cardiac problems were found among children and
adolescent cancer survivors who were treated with anthracyclines and/or chest radiation. They were 6
times more likely to develop congestive heart failure than their siblings who did not have cancer.
Further, it has been shown that the late effects of childhood cancer substantially reduce life expectancy.
The incidence in cancer in the AYA age group increased steadily during the past quarter century. We
don’t know why……behaviors – smoking, sun exposure; environment; obesity, tumor biology,
decreased surveillance?
The AYA group represents about 6% of all new cancer diagnosis which means 1 in every 168
Americans between the age of 15 and 29 will develop cancer. This group is 8 times more likely to
experience cancer than those under the age of 15. Seer data showed that males in the 15 -29 year age
group are at higher risk than same age females for developing cancer, with the risk directly proportional
to age. Non-hispanic whites have had the highest incidence of cancer during this phase of life and
Asians, American Indians and Alaskan Natives, the lowest. The prognosis for males was worse than for
females, and African American/Blacks, American Indian/Alaska Natives had a worse prognosis than
white non-Hispanics and Asians.
The incidence of cancer in AYAs is increasing exponentially as a function of age, with approximately
half of the AYA group in the 25-29 year age range. With the exception of invasive skin cancer due to
ultraviolet light exposure, the majority of cancer types occurring in AYAs aged 15 to 29 years are not
readily explained by either carcinogenic environmental exposures or family cancer syndromes. The fact
that the AYA group has an exponential risk of developing cancer as they age suggests a possible
molecular basis resulting in a basic carcinogenic exposure that is age-dependent, such as telomerase
shortening or a mutation-to-malignancy rate that increases constantly with age.
The majority of research has focused on clinical trials for pediatric patients with an age limit for
participation of 18. Even when eligible for pediatric clinical trials, AYA patients are often treated by
adult oncologists. What is the result? Significantly worse outcomes and an event-free survival of 38%
versus 64% were seen when adolescents were treated on pediatric protocols at pediatric institutions.
Pediatric cancer patients had a greater than 75% event-free survival on the same protocols. When
clinical trials are not an option, AYAs with “adult” types of cancer, such as melanoma, breast cancer,
and colorectal carcinoma, may need the treatment expertise available at adult cancer centers.
“There is no other patient age group for which the time period to diagnosis is longer, clinical trial
participation lower, and fewer tumor specimens are available for translational research” (Bleyer, 2006).
The lack of clinical trial participation is particularly problematic with only 1-2% of all 20-29 year olds
with cancer participating in a therapeutic clinical trial sometime during their cancer experience. A
correlation exists between the level of clinical trial activity and improvement in survival prolongation
and mortality reduction. These factors explain much of the deficit in translational research and the lack
of tumor specimens available for studies assessing molecular and cellular mechanisms of cancer in
AYAs.
Prevalence and Distribution
of Cancer in AYAs
The top ten cancers affecting this age group are lymphoma, leukemia, melanoma, female genital cancer,
cancers of the breast, thyroid, sarcoma, testis, colon, and brain. The distribution of cancer differs by age
group with a higher incidence of hematologic cancers (40%) in the 15-19 year olds that decreases to
20% in the 25-29 year olds when melanoma becomes the predominant cancer (see figure 2).
AYAs are vulnerable to the challenges of an immature coping repertoire. They may have a limited
ability to look beyond the present, and the perils of uncertainty. The AYA years are a time to focus on
building the skills and a personal foundation that will support them as they become adults. This is the
time they learn to adapt to newly emerging intellectual abilities, to balance the influence of peers and
family, and to adjust to society’s behavioral expectations. This is the time when they internalize a
personal value system, investigate their sexuality, and prepare to become contributors to society, prepare
for their future and independent adult roles.
Uncertainty
Uncertainty can play a large role in the AYA cancer experience. Mishel’s “Uncertainty in Illness
Theory” provides a framework for looking at the AYA experience. This theory states that uncertainty in
illness situations can be experienced in four ways;
• ambiguity about illness and
symptoms,
• complexity of systems of care,
• lack of information about diagnosis
and serious of the illness, and
• the unpredictability of the disease.
The elements of this model ring true when reviewing of the literature about the AYA with cancer.
Consider the issues impacting a “survivor” of childhood leukemia. An 11-year-old female diagnosed
and treated in 2000. She may have received cytarabine, daunorubicin, etoposide, and prednisone.
Today she is 21 years old, a college grad but unemployed and uninsured and cancer-free. She may delay
or not seek health care for symptoms associated with prior chemotherapy because she does not associate
current symptoms with prior damage from chemotherapy, or she may not have the funds. She may
minimize or deny her symptoms. She might find the process of getting an appointment with a specialist
too daunting to pursue or she might actually fear that her cancer has returned and that she will not
survive further treatment. Because of her exposure to certain chemotherapy agents she is at risk for
cardiac damage, nerve damage, secondary malignancy and infertility. Add to that the potential for
insurance denial because of pre-existing condition and the challenges are overwhelming.
Long-Term Concerns
The Childhood Cancer Survivor Study was a cross-sectional survey of 635 consecutive survivors
(approximately 5%) drawn from a group of 12,156 participants age 18 years or older, who at an age <21
years had survived 5 years from diagnosis of cancer. This study revealed that only 35% of AYA cancer
survivors realized that they could have significant health problems after being treated for cancer. The
survey asked about their knowledge of their cancer diagnosis and other associated therapies in a 3- to 5minute telephone survey. Overall, only 72% accurately reported their diagnosis while 19% were
accurate but not precise. Individuals with central nervous system (CNS) cancer and neuroblastoma were
more likely not to know their cancer diagnosis. The accuracy rates for reporting their treatment history
were 94% for chemotherapy, 89% for radiation, and 93% recalled that they had a splenectomy. Among
those who received anthracyclines, only 30% recalled receiving daunorubicin therapy and only 52%
remembered receiving doxorubicin therapy, even after prompting with the drugs’ names. When
prompted with choices of names of different diagnoses, 72% of the participants accurately reported their
diagnosis with detail and 19% were accurate without detail. When asked the question of whether past
therapies could cause a serious health problem with the passage of time, 35% of participants responded
yes, 46% responded no, and 19% did not know. Only 15% responded that they ever received a written
list of their disease diagnoses and treatment, including names of chemotherapy agents, to keep as a
reference in the future.
Developmental Issues
Caring for cancer patients of any age is never easy. But for the AYA there are unique challenges.
Certainly there are biomedical and genomic issues which are not yet fully understood. Cancer in the
AYA group has the greatest heterogeneity. But for any adolescent or young adult, regardless of health
status, this is a time of rapid change related to development and emotional health, a time when they ask
“who am I”. It is a time for examination and integration of values and beliefs with those of society as
well as a time to develop independence. This is when they form meaningful relationships outside the
family by establishing strong attachments to their peer group. Even as they strive to develop
independence they vacillate between dependent and independent functioning
Add cancer to the mix and you will find adolescents who are at risk for loss of control, loss of
independent functioning, devastating impact of alterations in body image, isolation from their peer
group, loss or change in goals for the future. Today there are many on-line forums, blogs, and websites
to help the AYA and the health care provider. Some of the comments from an AYA blog, when asked
to compare “real live” vs “cancer life” reveal their reality:
• “Doctors don’t trust me, I don’t trust
them”
• “I had to deal on my own with
things that no one may age knew
anything about”
• “I met a grand total of 4 young adults
in 18 months, all but one died”
There are key developmental milestones that are profoundly influenced by the cancer experience.
During adolescence and into young adulthood, the focus is on committing oneself to concrete affiliations
and partnerships. While in this developmental stage the young adult builds on the identity established in
adolescence. A young adult learns to develop reciprocity in an intimate, interpersonal relationship in
which it is possible to merge his or her identity with that of someone else without fear of losing the
sense of self. This individual begins to strive toward financial, psychological, and physical independence
and autonomous living. During cancer treatment, the young adult with cancer faces threats to achieving
these key developmental steps that include altered body image, isolation from school/work/community,
loss of ability to maintain or develop intimacy with significant others, change in a timeline for achieving
goals, and a loss of independent functioning.
Clinical Trial Participation
Historically, 90% of children younger than 15 years with cancer are managed at institutions that
participate in NCI-sponsored pediatric trials but only 21% of adolescents 15 to 19 years old participate
in clinical trials with far lower estimates for 20- to 29-year-olds. This probably reflects the fact that the
vast majority of AYAs with cancer are treated in community- based settings by oncologists who do not
regularly enroll patients onto NCI-funded clinical trials. Experts argue that this deprives AYAs access to
contemporary treatment approaches and clinical expertise that could improve outcomes and
consequently see increasing enrollment of AYAs on clinical oncology trials as a critically important
strategy for improving survival. The decreased number of AYAs participating in clinical trials also
results in under-representation of their tumor tissue in the national tumor banks. Without blood and
tissue from the cancers that affect AYAs, scientists are unable to advance our knowledge about these
types of cancer.
Research is needed to understand how these cancers differ in AYAs in terms of tumor initiation, their
biological features, and how they may vary in treatment response. Is there a difference in the AYA for
susceptibility to cancer and tolerance of therapy?
Fertility
Certain types of chemotherapy and radiation can put females at risk of acute ovarian failure or premature
menopause. These include total-body irradiation (TBI), and chemotherapy regimens containing highdose alkylators. Males are at risk of temporary or permanent azoospermia resulting in infertility from a
wide variety of chemotherapy regimens, TBI and radiation to the gonads (Levine et al., 2010).
Preventive measures should always be taken when possible. Shielding should be utilized when possible
to reduce scatter radiation to the reproductive organs. Other methods must be accomplished prior to
initiation of cancer treatment. These include for males, cryopreservation of sperm through banking,
testicular tissue freezing, or testicular sperm extraction. Strategies for females include embryo freezing,
egg freezing, and ovarian tissue freezing. Except for ovarian tissue freezing, the strategies for women
involve multiple challenges. Embryo cryopreservation, for example, requires several weeks of hormone
stimulation of the ovaries which may delay the initiation of treatment. Additionally, estrogen
stimulation can introduce additional risks to the female patient newly diagnosed with cancer.
There are also practical and ethical considerations and barriers to address. Unfortunately, according to
the NCI, fewer than 50% of oncologists follow national guidelines on fertility preservation published by
ASCO in 2006. Oncologists may lack knowledge about fertility preservation techniques and guidelines
and lack awareness of appropriate referral sites. There may be underlying concerns about the potential
delay in treatment posed by fertility preservation. It is the responsibility of the health care team to be a
key stakeholder in the preservation of fertility for their patients. Education, support, and planning are
critical to fertility preservation in the AYA at the time of diagnosis. It is recommended that cancer
centers create linkages to specialized teams to provide guidance to the AYA of either gender. It is
critical to plan ahead. If your facility does not have a plan in place today, research the ASCO guidelines
and develop a plan.
Key Components to a Successful
Program for Adolescents and
Young Adults
In 2005-2006 the NCI and the Lance Armstrong Foundation sponsored the Adolescent and Young
Adult Oncology Progress Review Group (PRG) who created the directive to develop standards of care
for the AYA patient with cancer (Zebrack et al., 2010). Their position statement lays the foundation for
creating nationally accepted criteria and standards of care for practice, which would lead to the
development of formal, certified training programs for the AYA healthcare practitioners. They
determined that “quality care for AYAs depends on four critical elements;
• Timely detection,
• Efficient processes for diagnosis,
initiation of treatment, and promotion of adherence,
• Access to health care professionals
who possess knowledge specific to
the biomedical and psychosocial
needs of this population, and
• Research that will ultimately derive
objective criteria for the development of AYA oncology care.”
Timely Detection
At the helm of the lifeboat to improve clinical care for AYAs with cancer or survivors of cancer is the
oncology health care team. The interval from onset of the first cancer-specific symptom to the first anticancer treatment is called “waiting time” and is longer in AYAs. The time to diagnosis is longer in
AYAs than in children. The “waiting time” may be influenced by factors related to the individual, the
health care system or the disease.
Make a commitment to increase awareness and education so that delays in diagnosis can be avoided.
Maintain a high index of suspicion for late effects of anti-cancer therapy or recurrence in cancer
survivors. Avoid failure to recognize cancer-related symptoms or recurrence of cancer. Be aware that
AYAs often deny symptoms, are too embarrassed to report them or attribute them to psychosomatic
manifestations.
Efficient Processes for Diagnosis,
Initiation of Treatment, and Promotion of Adherence
Encourage and assist AYAs to seek care at a comprehensive healthcare center. Know that there are very
few known causes of cancer during early adulthood and it “just happens” regardless of the health of the
person. Realize that AYAs are least likely to have adequate health care insurance and that they should
not allow themselves to “age out” of insurance.
Convey that what is done at the time of cancer diagnosis is important and that the best outcome is
determined by the initial evaluation and therapy. Optimal cancer management means doing it right from
the start! Provide social and emotional support, inquire about social needs at time of diagnosis. Refer to
a social worker or mental health professional as indicated.
Access to health care professionals who possess knowledge specific to the biomedical and psychosocial
needs of this population
Plan to provide adequate social support and prepare for fertility conservation. Help to reduce risk of
medical complications following treatment by providing a summary of the diagnosis, types of treatments
provided (including surgical procedures, names and doses of anti-cancer agents and amount of radiation
delivered).
Be aware of the medical complications of cancer treatment in AYA cancer survivors. Provide riskbased survivorship care and symptomatic surveillance for late effects of cancer therapy. Don’t fail to
educate regarding health promotion, wellness and cancer prevention (diet, physical activity, stress
management, smoking cessation, sun protection). Have a plan for transition of care for survivors
entering young adulthood.
Comprehensive Cancer Research
Once diagnosed, suggest clinical trials. Help the AYA find centers that participate in trials suitable for
their age. Once enrolled in a clinical trial, the AYA needs understanding and support in order to best
adhere to the trial’s requirements. Refer patients to a center with NCI funded clinical trials, or refer to
oncology center that has an AYA focus and environment.
Ask the Patient!
A review of AYA responses to the question of what they would want to see in their cancer treatment
program provided insights and suggestions that center around peer interaction and developmental tasks.
• “Break the rules on my visiting hours, if my friends can come at 8:30 p.m., let them in.”
• “Do not comment about my diet, I have cancer, I’m in the hospital. Heart disease is not my main
concern. If I want McDonalds, let me have it.”
•“I want my oncologist to think of me in terms of my whole “person”, not just my cancer. I have a life,
and I want to live it.”
• “I want you to talk to me about sex. I may be too embarrassed to bring it up, so I’m begging you to.”
• “Tell me the truth, even if it’s bad or scary. Let me know if it’s going to hurt.”
•“Figure out a way to let me have Facebook! It’s my lifeline to the outside world.”
When asked, “Where did you want support but did not find it?” the AYAs identified childcare issues,
financial issues, health insurance navigation, access to clinical trials, a place to study or work at the
hospital and information about fertility and sex.
Ferrari et al, (2010) describe key elements to consider when starting an AYA program. These include:
• Access to the newest Children’s
Oncology Group protocols
• Collaboration with adult institutions
• Links to organizations involved in fertility preservation
• Close monitoring of patients to encourage treatment adherence and clinical trial participation
• Group adolescents on the inpatient unit in designated rooms together, when possible
• Group adolescent patients into designated clinic times
• Convert clinic playroom to teen room during this time
• Engage adolescents in monthly support groups held during clinic
• Engage parents in monthly support groups held during clinic
Remember that adolescents with cancer experience multiple distressing symptoms including pain, nausea,
appetite changes, mood disturbances, sleep disturbances, and fatigue. Fatigue has been identified as the
most prevalent and distressing symptom experienced by adolescents with cancer and places an extra
burden on patients trying to participate in normal activities during treatment.
Research, Support & Advocacy
There is a lifeboat standing by, thanks to the support of The Lance Armstrong Young Adult Alliance, the
Comprehensive Cancer Center Adolescent and Young Adult (AYA) Coalition - National Cancer Institute
of the National Institutes for Health and many independent non-profit groups such as the “I’m too young
for this” Foundation, Cancer Care “The Stupid Cancer Show” and Planet Cancer.
Is that a Lighthouse Ahead?
There has been significant increase in awareness of the AYA cancer survival gap since NCI, SEER and the
Children’s Oncology Group published an epidemiological monograph in 2006. There has been research
primarily conducted by oncologists, oncology nurses, pediatricians and psychologists. Research has been
focused on identification and description of the issue but there is much more to do. Fortunately there are
dedicated funding sources and the issue “fits” with ONS research objectives.
Call the Pilot!
Is it time for an AYA Navigator? Evaluate the way you provide care and services to the adolescent and
young adult. Would an AYA Navigator provide the missing link necessary to help “bridge’ the AYA
survival gap? Consider creating or adopting pathways and standards of care for this age group. With an
increased awareness of the issues surrounding the care and treatment of this unique group a dedicated
navigator could make a significant difference in their cancer treatment outcome.
Take the Helm, Mate!
This is a call to action. The problem is significant and well-defined. Oncology nurses are well-suited to
take the helm in the development of nursing care guidelines and programs. The Live Strong-NCI strategic
plan included a call for core competency curricula and continuing education programs for the AYA group.
Education on the issues related to appropriate care of AYAs with cancer is a need that has been identified.
Prepare for fertility preservation of AYAs who trust you with their cancer treatment. Utilize technology to
educate, support, and promote adherence. Be aware of developmental issues that underlie the responses
and behaviors of the AYA with cancer. Familiarize yourself with the many internet resources that AYAs
are utilizing, and participate where you can. Embracing the technological tools of adolescents and young
adults may provide health care providers with powerful instruments to reach and support the AYA
survivors and those undergoing cancer treatment. Remember that for most oncology practitioners
oncology care is a disease of the aging population and oncology culture is not geared to the culture or
communication styles of the young…yet.
References
Bleyer A, O’Leary M, Barr R, Ries LAG (eds): Cancer Epidemiology in Older Adolescents and Young
Adults 15 to 29 Years of Age, Including SEER Incidence and Survival: 1975-2000. National Cancer
Institute, NIH Pub. No. 06-5767. Bethesda, MD 2006.
Butow, P., Palmer, S., Pai, A., Goodenough, B., & King, M. (2010). Review of adherence-related issues
in adolescents and young adults with cancer. Journal of Clinical Oncology, 28(32), 4800-4809.
Ferrari, A., Thomas, D., Franklin, A., Hayes-Lattin, B., Marcarin, M., van der Graff, W., & Albritton, K.
(2010). Starting an adolescent and young adult program: some success stories and some obstacles to
overcome. Journal of clinical Oncology, 28 (32), 4850 -4857.
Kazak, A.E., DeRosa, B.W., Schwartz, L.A., Hobbie, W., & Ginsberg, J.P. (2010). Psychological
outcomes and health beliefs in adolescent and young adult survivors of childhood cancer and controls.
Journal of Clinical Oncology, 28(12), 2002-2007.
Kondryn, H.J., Edmondson, C.L., Hill, J.W., & Eden, T.O. (2009). Treatment non-adherence in teenage
and young adult cancer patients: a preliminary study of patient perceptions. Psycho-Oncology, 18(12),
1327-1332.
Levine, J, Canada, A., & Stern, C. (2010) Fertility preservation in adolescents and young adults with
cancer. Journal of Clinical Oncology 28(32) 4831-4841
Manne, S.L., Jacobsen, P.B., Gorfinkle, K., Gerstein, F., & Redd, W.H. (1993). Treatment adherence
difficulties among children with cancer: the role of parenting style. Journal of Pediatric Psychology,
18(1), 47-62.
Morasso, G., DiLeo, S., Caruso, A., Decensi, A., & Contantini, M. (2010). Evaulation of a screening
programme for psychological distress in cancer survivors. Supportive Care in Cancer, 18(12), 15451552.
Smith, M., & Hare, M.L. (2004). An overview of progress in childhood cancer survival. Journal of
Pediatric Oncology Nursing, 21(3), 160-164.
Taddeo, D., Egedy, M., & Frappier, J.Y. (2008). Adherence to treatment in adolescents. Pediatric Child
Health, 13(1), 19-24.
Zebrack, B., Bleyer, A., Albritton, K., Medearis, S., & Tang, J. (2006). Assessing the health care needs
of adolescent and young adult cancer patients and survivors. Cancer, 107(12), 2915-2923.
2010
The Patient’s Voice
From the Kitchen Table to the Clinic
Donna L. Berry PhD, RN, AOCN, FAAN
McCorkle Lecture 2010
This lectureship started in 1987 as a special tribute to Ruth McCorkle, a founding member of PSONS. This
award is given in recognition of a member’s significant contribution to cancer nursing. The chapter
member is nominated by other chapter members and selected by the symposium committee.
The face-to-face time we spend with our patients in the clinic and the hospital is a small slice of life
from their perspective. The cancer journey and experience is much larger than what we observe in our
clinical settings. An individual’s experience is, metaphorically, more relevant to what happens at the
kitchen table than what happens in our institutions. In order to provide excellent navigation and
guidance, we need to find out what that conversation and experience is all about and address the areas
where help is needed.
In 1989 and 1990 when I was conducting my dissertation research, I was talking to a group of men and
women who each had had a diagnosis of genito-urinary cancer. I interviewed them about what it was
like to go back to work after their cancer diagnosis. I expected to hear a lot of complaints and a lot of
sadness. I heard some of that, but I also heard stories about the benefits of going back to work; how
normal it made them feel. What an important lifeline their job was for them! And interestingly, the men
who had prostate cancer reported that going back to work gave them an opportunity to listen to their
colleagues and co-workers talk about their experiences with cancer. These conversations helped these
men understand that they weren’t alone.
During my research I heard other important things as I listened to their stories. One of the amazing
things I heard was what a terrible and terrific decision it had been to choose a treatment.
Prostate cancer is somewhat unique from other cancers because we don’t have large medical clinical
trials that tell us what is the best treatment overall. As I talked to these gentlemen, I realized we didn’t
know what we didn’t know about the decision-making process. What I did know was that prostate
cancer is the most common cancer in men. And survival rates and complication rates of treatment are
not easily interpreted because of the lack of randomized trials. They shared their stories about how they
were going about making their decisions and sometimes there were rather unexpected decisions.
Here are some examples. “I was told by the doctor that I couldn’t lift anything for six weeks.” That was
going to interfere with this gentleman’s job. He didn’t have six weeks of vacation or sick time and he
had a very physical job. His job required that he lift buckets of dirty mop water and vacuum a very large
library. He couldn’t chose surgery and be out of work for six weeks.
Another man said, “The thought that I can cure it with surgery; that took precedence.” So for him,
having some assurance that removing all the cancer cells was important. “More important to me than
getting you know—preserving sex—sex life.” So he was not worried about impotence as a complication
from either surgery or radiation.
Another man said, “I think the seed implant is good in my mind; the number one option at my age. And
that’s the first thing my business associates said. He said, at our age, seed implant is what you do.”
And finally, one of the men told me, “I was going to tell the doctor that I wanted to go with the best they
had. What would be the best for me?”
These interviews led me to the essence of the intervention I would eventually develop. Men were
balancing their age and other personal factors against the side effects of different treatments. They
would then come to a decision, sometimes based on what happened in 1960 to their uncle, or sometimes
the decision may have revolved around what was going on at work. It was always about them; about
their personal factors. The medical factors didn’t help them with their decision in the same way.
In other cancer diagnoses, we also have rational people, sometimes making irrational decisions based on
myths or lack of understanding. And this includes all kinds of decisions that need to be made; ranging
from whether I take my medications at home, to when to place a parent who has progressive dementia in
assisted living. These scenarios emerge where there’s no one definitive clinical action for the clinician
to recommend because it has to do with personal factors that are unique to the individual.
For people with healthcare concerns, (including all of us) there often are menus of options. Each option
has its own set of potential outcomes and uncertainties. Informed consent and patient education
materials primarily present only the medical facts for these options. They can’t present to the patient
their own personal factors. We provide reams of data and information about the treatment choice, and
then we place the burden, or the opportunity, for the decision on the individual and their family. Once
these treatment decisions are made, our patients may still be facing the greatest challenge of their lives,
and all of it taking place in the greater context of their lives.
So I want to share more with you regarding what people go through in the cancer experience. Our
patients become experts in their own symptoms and quality of life concerns. And it’s our responsibility
as clinicians to offer the opportunity for patients to report their experience. And yet we’re faced with
shrinking resources including fewer clinicians with limited time to spend with patients. We are losing
time for comprehensive interpersonal interactions with outpatients; yet that patient’s experience,
particularly reliably and systematically reported symptoms of treatment, is an essential component upon
which our assessment, diagnosis and treatment plan are based.
So starting ten years ago, I and others were compelled to develop a very practical method in which we
could gain information about symptoms and quality of life and quickly review this for the clinical visit.
A method was needed for rapidly understanding what was problematic and what was not, so we could
immediately focus on the problems without going through twenty questions to get to the problem. This
would save some time while making sure our patients have the chance to report their symptoms and
quality of life issues.
This solution was developed in 1999 with direct care oncology nurses at the University of Washington
Cancer Center. We established a very dynamic research team of clinicians from three different
disciplines, including informatics specialists, and graduate students which resulted in a randomized
clinical trial conducted from 2004 to 2007. The purpose of that trial was to compare the clinical impact
of having an electronic self-report assessment summary output available to the clinical team versus usual
care. We tested this in all ambulatory services, focusing on whether or not we could make a difference
in the communication of symptoms, therapies that were recommended and the referrals made for these
problematic symptoms and quality of life concerns.
The patients used touch-screen computers that were easy to navigate and had very easy-to-use interfaces.
We asked them questions about their symptoms and quality of life. We asked them to give numbers to a
lot of things, but we also had a question like this, “Please type in the two most important concerns or
issues that we should address first with you and anything else you want to tell us about which we
haven’t covered here.” We wanted to know what was so bothersome to them that we should start with
that issue. Within a second, the program could generate a report for the clinicians. In a sixty-second
glance, that clinician could know exactly what problems were important to the patient.
At the end of four years we had complete data for 590 patients and we had an audio recording of their
visit with their clinicians. We scored those 590 audio recordings very carefully. We found that
symptoms and quality of life concerns were addressed significantly more often when the clinicians had
the summary and more often when their issues were at a moderate to severe level..
I’m going to give you some other examples of things that we discovered from this study. We found out
that for transplant patients, financial issues were a very big concern. You can just hear this being talked
about at the kitchen table, can’t you? For example: “Not only are we having to deal with cancer; my
family has to go out and raise money just so I get treated for it.”
We found very interesting dialogues in the audio-recordings regarding sleep disturbances. Of those 590
patients, 120 of them reported serious insomnia. They had said either “I have difficulty getting to sleep
and staying asleep almost every night” or “It’s almost impossible for me to get a good night’s sleep.”
The majority, 81 of 120, had a conversation with their clinician during the visit and, for the most part,
once the clinician talked to the patient the problem was addressed. For 27 of the 81, the clinician
addressed concomitant symptoms, saying “let’s see if we can work on your pain so it will help your
sleep”. A small percent (15%) of clinicians, (but a should-never-happen-percent) changed the subject
when the patient brought it up during the clinic visit. And if you add that to the forty one visits in which
the problem wasn’t addressed by anyone at all, we find that about half of 120 patients with serious
insomnia received no attention to the problem at all. What’s wrong with this picture? These are the
things that our patients are trying to deal with in their homes that are part of their whole experience of
their cancer, but when they come to our clinic, we’re not getting to their problems.
If we find out that we can impact and improve communication between patients, don’t we want to bring
the results of our research back to our clinical care? Don’t we want to make a difference in our clinic
and change the way we treat, assess, and see our patient? We’re a practice discipline; it’s just not good
enough to only learn about these problems. What will it take to further promote appropriate clinician
responses when patients self-report these troublesome symptoms?
Well, we need some enhanced training; specialized training, communication training and notably for
psychosocial issues. For example, as a clinician are you comfortable listening to and responding to a
patient discuss the significant impact their cancer and treatment has on sexual activities and interest? If
you’re not ready to talk about that, find somebody who is, or have the brochure ready. If all you can do
is give the brochure, that is something and we haven’t ignored it and we haven’t changed the subject.
We need new research questions along these same lines. We’ve made a difference by giving the
clinicians a summary of the patient’s self reported symptoms, but now can our patients be prompted to
not only raise the issue with their clinicians, but then to go on and insist that someone deals with the
issue? Can we get our patients to engage in self-care issues by helping them understand their symptoms
in between clinic visits and monitor their symptoms and the effect of what they’re doing with self-care
on their symptoms? And finally can we improve symptom outcomes? These questions make up our next
clinical trial. This method I’ve described has been implemented at the Seattle Cancer Care Alliance and
at Dana Farber where I am currently.
The bottom line of what this is all about: creating opportunities and an environment for individuals to
fully express themselves regarding their healthcare issues and then fully participate in their own
healthcare. We can do that by honoring their voice, by honoring their experiences; what they’ve been
through outside of the clinic and engage them in telling us their stories. We can harness technology to do
this that is efficient and cost-effective to reach every patient. My career in Seattle was profoundly
rewarding because I was able to address the issues and develop interventions that work for our patients.
It is that simple. Thank you to everyone who has been with me for these efforts!
2009
Taming the Dragon
Caring for the Patient with Advanced Cancer
Carla Jolley
2009 McCorkle Lecturer
When I first entertained the idea of using the dragon as a symbol of cancer, I was researching it from
the English historical perspective. In the years of early Christianity there was the need to slay the pagan
beasts. The saints such as St. George, slayed the enemy-“a dragon”, because it needed to be conquered
before it overwhelmed the hero and destroyed the villages.
When I apply this to our oncology patients, I think of the extensive symbolism that we use around the
“battle” with cancer. Patients see cancer as the enemy to overcome, and the foe like, the dragon in old
English times, to be fought and to be slayed. My thoughts then turn to the patient with advanced cancer,
for whom this mythical creature is typically depicted as gigantic and powerful, not unlike the diagnosis
of cancer. Their cancer or their “dragon” will ultimately lead to their demise and to the end of their life
journey.
So what if rather than slay the dragon, they learn to tame, to harness, to find another way to live with
this beast that has entered their lives and creates chaos and fear.
In fact, as I learned more about dragon lore I found that dragons are believed to have major spiritual
significance in many religions and cultures around the world. Not only are they depicted as gigantic and
powerful serpents or reptiles, but they have magical and spiritual qualities as well. Certainly they have
been portrayed as great foes of heroes, but also as great teachers of wisdom.
What can we do as oncology nurses to help patients reframe their relationship with their advanced
disease to assist them in the taming of the dragon so that they do not live in fear or are incapacitated by
their diagnosis? But instead, are able to feel empowered to make the most of their time left in their
journey, to find a way to maximize their quality of life, their interactions, and their relationships.
In summarizing of parts of my lecture, I will write about sustaining hope in patients with advanced
cancer. I will describe techniques I have found helpful, and those pearls of wisdom found in the literature
for establishing and clarifying goals of care then, lastly, transitioning patients for their final journey.
For those we care for or care about, those who have been diagnosed with advanced disease, Stage IV, or
with metastatic and/or recurrent disease it is not “If I will die of this disease….but WHEN. ” Hoping for
the best possible outcome, while preparing the patient for the worst outcome are not mutually exclusive
strategies. It is reasonable for patients and families to prepare for a range of outcomes. There is no harm
in dealing with advanced directives and preparing financial matters, even while hoping for a cure or for a
miracle. Addressing or raising these questions early on in the disease process makes it easier when
emotional states are less impacted by physical states. It does not make it however, less difficult for us
when dealing with our own discomfort about discussing difficult topics. Acknowledging that each
situation is unique and each person has individual coping styles and cultural implications, will guide us in
how best to approach these topics
Lived Experience
The lived experience of the patient with advanced cancer finds any resemblance of normalcy gone. They
often find themselves in a condition of crisis after the diagnosis. Normalcy can be replaced with
uncertainty and fear. Instead of “what are you doing” the questions becomes “how are you doing?” They
give away control of their well being to total strangers in hopes they will have the answers to questions
they don’t even know how to ask. It is a vulnerable time filled with selective hearing, stress induced
emotions in the middle of needing to make life-affecting decisions. Patients end up managing the outside
world of good intentions. I liken it to with what happens when a woman is pregnant: she is told all the
worst stories and more advice and suggestions than she could possibly have needed, much less wanted.
The internet has definitely magnified this by creating confusion, a lot of distrust, and many “what ifs?”
Part of good oncology care involves trust in the relationship with the health care providers; there is
actually a healing that can occur as a result of the relationship itself, a kind of ministry of presence. Then
also for the patient this lived experience with advanced cancer brings the loss of time. Time is everything
for the patient, caregivers, and loved ones. So much time ends up spent on the illness and not living to the
fullest, and so little time spent on joy- unless the patient is intentional. The other factors that often play
into the patient’s experience are lack of energy as well as the loss of control as the mighty dragon beast is
confronted.
One of the things to recognize as oncology nurses is that we just get a mere snapshot of the 24/7 of our
patient’s lives. Most patients really put their best face forward, as they often appear overly hopeful in
their relationships with their health care providers. I have seen patients in my practice who haven’t
dressed or been out of bed all week get “made” up for their clinic visit or treatment.
The picture on page one is of my Aunt Karen, and was taken a couple of weeks ago by a wonderful
caring oncology nurse. She had been diagnosed with breast cancer three years ago and was on a blinded
clinical trial for Arimidex vs. Tamoxifen and was having blood tests every 6 months and had increased
LFTs. I am guessing they were very elevated as they scheduled an ultrasound right away. She was
diagnosed with pancreatic cancer that had already metastasized to her liver….no symptoms. She would
say to me, “for a dying person I feel terrific.” Most of her symptoms these days are related to the
treatment side effects. She has been a caregiver to my uncle with fairly advanced Parkinson’s disease for
over 5 years (not what she had envisioned for her retirement about that time). It has been a very isolating
and limiting experience for her to be a fulltime caregiver. She has a strong faith and a supportive faith
community. I went with her to her first appointment; her oncologist laid it out for her very well in a
compassionate framework, was very clear this was not curative, and framed it that in the best of all
scenarios a good outcome, if all went well, would allow her a year.
But she had a very practical pressing need. Though she needs to hope for the best, now is the time to plan
for if things don’t turn out for the worst. She really needed to get her affairs in order and start planning
for my uncle’s care … now….not in crisis….avoidance and denial were a luxury. So unless we explore
what is important or pressing in our patient’s lives beyond the cancer experience we miss opportunities to
support them in meaningful ways.
Finding ways to stay positive and hopeful but still attend to the practical is a challenging balance. I think
oncology nurses have great opportunities and unique inroads with their patients to be able to help patients
and families find their own journey and to instill and sustain hope despite the inevitable.
Hope and Hopelessness
What is hope? It is an essential ingredient of the human existence. Hope maintains strength and gives
substance to courage and is about believing what is still possible. It is anything that contributes to a sense
of meaning and purpose. It is a trust in oneself and the future. It is a belief and an attitude that something
I desire or believe in can and/or will happen. It may be grounded in our spiritual beliefs, a belief that
something eternal exists, or that something sacred is around us and in us. Hope remains open to the
mystery that is around us. It remains open to all possibilities, including that things may turn out other than
imagined and it can still be okay. Hope becomes the anchor as we wait out the storm. Having cancer can
feel like a storm, a very significant storm.
Several studies have looked at characteristics of skilled clinicians who instilled hope through their
interactions with patients and they found that they included: honesty, forthrightness, confidence, good
listening skills, calm demeanor, good eye contact, compassion, and the ability to allay fears and anxiety.
These are characteristics that I see in many of my fellow oncology nurses and are attainable with practice
for those new into the field as well.
The well-known phrase, “while there is life there is hope” has far deeper meaning for our patients and it
is power in the reverse “while there is hope there is life…hope comes first and life follows”. Hope gives
power to life. Hope encourages life to continue, to grow, to reach out, to go on…despite living with a
serious illness.
I once had a patient who was told they had six months to live; he was one of those patients who continued
to choose treatment to fourth and fifth line drugs at great cost and significant side effects. As a former a
navy seal, he had endured much, and he was one of those who had chemo within days of his death. His
wife said later that though she had long since made peace with what was coming, he was so proud he had
lived 18 months. I remember the nurses having to find him on his lawn mower in his back acre to change
his epidural pain pump. Hope can be of making it to certain events or achieving goals of making it to
daughters getting married, grandchildren being born, and upcoming graduations. It can be as simple as
every day living, finding meaning in their own life. It can be hope of healing relationships or having
special times with family and friends. Hope of good pain and symptom control, being will cared for and
supported, and hopes of a peaceful death.
What influence do we have over another’s hope? Hope increases when honest information is provided
and is reduced when information is withheld. Old and Swagerty identified these factors that increase
hope: feeling valued; symptoms controlled; having meaningful relationships; honesty, humor and realistic
goals. While factors that destroy hope are: abandonment; isolation; lack of directives or goals; unrelieved
pain or discomfort, dishonesty, and feeling devalued or worthless. The oncology nurse through their own
relationship, addressing symptoms, and assisting with goals can increase hope for their patients.
And obviously, the opposite of hope is hopelessness, and it is a common reaction to cancer. In most of the
literature the common fears were: fear of a painful death, poor symptom management, and the fear of
abandonment. To be able to allay fears and anxieties we need to have the courage to explore what they
might be…it is hard to address these if we don’t ask about them. The other areas that impact or add to
hopelessness are the symptoms of depression and anxiety. In Mystakidou literature review, they found
that 5-26% of cases had major depression associated with shorter survival times, prolonged
hospitalizations, and lower quality of life. There were 25-48% that experienced anxiety with 2-14 %
meeting the criteria of an anxiety disorder. Thus, when patients complain of insomnia, I often will use
that as an opportunity to ask about anxiety and what they may be worrying about. Patients will say that
the quiet of the night brings many of these fears to the surface.
In a study by Chochinov et al., it was reported that the single question “Are you depressed?”
outperformed longer assessment tools in identifying depression in 197 cancer patients. This is an easy
practice to adopt in our assessment of our patients.
Finding Inner Resources
Spiritual and religious concerns may be awakened and intensified at this time. The spiritual/transcendent
dimension is a central component of hope. Patients and families can use encouragement or permission to
bring this into their awareness as an essential part of their cancer care. We, as a western medical culture,
too often focus on the physical, the cancer, and not as much on the coping and spiritual components.
Oncology nurses can assist in ways to explore or find meaning in the current situation. Simple questions
such as “Is faith or religion important to you in this illness?? “Do you have spiritual or religious practices
or persons that help you?” “When bad things happened before…how did you cope?” Remember, we are
in a key position to make referrals to appropriate persons or encourage them to mobilize their own
resources.
How do we help patients tap into their innate knowledge and healing? We can encourage them to
implement mind-body intervention into their treatment plan. Gordon reminds us that mind-body
approaches to healing are based on the understanding our thoughts and feelings, our beliefs and attitude,
can affect and shape every biologic functioning. How someone feels physically and emotionally, how
well he or she functions in the world, and the level of distress from cancer and its treatment is an
important factor not only on quality of life but, we are learning, on quantity of life as well. We are
coming to some understanding of these processes. Research is examining the dysregulation of the
immune system and stress hormones. The finding of stress induced higher levels of cortisol and
adrenaline have been found to depress the immune function and even suggested to promote tumor
vascularization.
It is important to recognize mind-body approaches are based on the understanding that the mind and body
are inseparable and that the central and peripheral nervous system, endocrine, immune system, and all
emotional responses share a common chemical language and are constantly communicating with each
other. This area of scientific study is called psychoneuroimmunology and holds much promise.
Encouraging our patients to enlist these techniques can be of benefit. They look to us to provide other
ways that they can help with their well being and dealing with their cancer.
Mind body approaches and techniques have been shown to have physiologic benefits of decreased stress
hormones, improvements of sleep, mood, pain and enhanced immunity. The psychological benefits have
shown an increase in the sense of control in addressing the feelings of helplessness and hopelessness.
Stress is a very subjective experience. If patients see themselves as helpless victims and cancer an
overwhelming enemy, they experience far more stress that if they believe they can do something to help
themselves. Mind-body approaches are a form of self care and a way of nurturing. It is much easier to
advise or suggest techniques if we ourselves have experienced them. They can be come a very important
part of our own self care and wellness as well. We can help our patients overcome fears or biases; they
may be curious or be looking for input about integrative therapies. I encourage patients to explore ways to
add to their “tool box”- besides their chemotherapy and/or radiation that they can use for their healing
and wellness.
Palliative Treatment
The Chinese zodiac dragon represents strength, health, and harmony. Finding balance around the issues
of truth-telling and prognosis for the health care team has many challenges. Patients face difficult
decisions, especially in advanced disease, and as their disease progresses and they are on second and third
line regimens. Assumptions cannot be made either way in what they may or may not want. Patients
choices vary widely in weighing of trade-offs in decisions about goals for themselves. Patients may find
it hard to get or accept truthful information about the benefits and harms of palliative chemotherapy.
When Khatcheressain looked at 95 consecutive patients receiving palliative chemotherapy prognosis was
discussed only by 39% if their oncologists . Values used in decision making around treatments depend on
personal experiences and cultural and spiritual meaning. One study they reviewed showed that patients
with cancer were willing to undergo aggressive treatment with major adverse effects for a very small
chance of benefit. This was different from what their physicians or nurses would choose. One Medicare
study showed that 20% of patients who had metastatic cancer started on a new chemotherapy treatment
regimen 2 weeks before their death.
Chemotherapy for metastatic solid tumors such as lung, breast, colon or prostate cancer rarely, if ever,
cures patients. Its indication is to improve symptoms and provide a period of disease free or overall
survival. Palliative chemotherapy can relieve symptoms and improve quality of life and in some cancers
bring months and sometimes years into the realm of possibilities. What we do know is patients are
unlikely to benefit from chemotherapy when they have already failed standard regimens, have poor
performance status, and otherwise have a poor prognosis.
Why is it so difficult to talk about key factors such as prognosis or the limitations of what we have to
offer? Patients may respond with denial or anger or sadness. These are very normal responses but they
may be a difficult experience for the nurse. The problem is that avoidance of these discussions altogether
can lead to mistrust of the health care system and their providers, inappropriate use of life-sustaining
therapies, increased medical complications and sequelae, and long hospital stays.
Palliative Care as a Framework
Implementing a framework that works well when we are working with patients with advanced disease
where the path is more ambiguous is important. I believe incorporating palliative care is key to be able to
meet the patients and families needs in a holistic manner. Palliative care inquires about the patient’s
experience of the illness.
The focus of palliative care is optimal functioning, and the relief of suffering for patients facing lifethreatening or debilitating illness. It also involves support for the best quality of life for both patients and
families.
The definition and model of palliative care is becoming more familiar in the oncology realm. I appreciate
that it serves as a visual of how much that patient’s journey is a process. It is not “black or white” or
“either/or” but it is about transitions and balancing and recognizing as we put hope back into the context
that it is multidimensional, as the patient and family experience multiple losses in a changing reality. One
of the things we have learned from the palliative care research is the need to establish and clarify goals.
Goals can serve as touchstones, guideposts, and avenues to improved quality of life (see Table 1).
In establishing or defining goals of care, nurses have a unique and often difficult position. They may find
themselves in a position of attempting to clarify goals without knowing the extent to which the
information about prognosis has been honestly communicated to the family. It may also be that the
patient and family did not understand the information or “jargon” that was used. When I reflect on some
of the language that has led to misunderstandings with patients I care for, examples would be “partial or
complete response”, “remission”, “no evidence of disease” in the context of advanced cancer. I am also
reminded that there can be a notable power imbalance and many things that can influence the quality of
information received despite our best intentions.
Depending on the setting in which you work, you may not have the luxury for a relationship or the time
that is required to complete the process of establishing goals of care. But for some of us, we have
multiple encounters with the same patients and families. Yet there are still many opportunities in even
single encounters to explore some of the gentle questions to lead the patient through their own process
and build on the seeds that were sown before. I find this framework helpful as a guide. My experience has
taught me if you address the “elephant” in the room at the start of your relationship, it becomes much
easier for both you and the patient to revisit the issues later as disease progresses. I have seen that the
discussions patients and families face regarding the impending reality of the dying experience is eased if
it is a conversation and relationship you have already started.
Disease Progression
When the tide turns, how do we know? The single most predictor in cancer is performance or functional
status, which is an assessment of how much a patient can do for themselves, their activity and energy
level. Patients with solid tumors typically loose about 70% of their functional ability in the last three
months of their lives. Other indicators are multiple symptoms especially dyspnea and other signs of
increased tumor burden such as malignant pericardial effusion, multiple brain mets, malignant ascites,
malignant pleural effusions or malignant bowel obstructions.
There are tools available that can be helpful when assisting clinicians in their decision making,
establishing eligibility for care programs, and eligibility for clinical trials. One in particular is the
Palliative Prognostic Score that scores for the chance of survival from less than 1 week to 17 weeks
irrespective of cancer type. Accurate prognosis can be important and provide patients and their families
with information so that they can set realistic goals, define priorities and develop insight into their dying.
Often when we think about how to talk about prognosis it is helpful to translate it into time frames, hours
to days, days to weeks, weeks to months, 2-4 months etc. I work with a nurse who always tells families
her nursing degree did not come with a crystal ball but proceeds to lead them through the changes they
have been observing and experiencing since her last visit to ground them in the process.
Not everyone wants to know the truth about dying and that reluctance needs to be honored. Living as
fully as possible until one dies depends on being aware of the extent and the seriousness of what is going
on with their illness. The end of life is not simply a problem to be solved; it is also a mystery to be
experienced. We learn from the dying themselves, who know best what their deaths mean to them and
how to cope with them. Decisions made at the end of life are often ambiguous and complicated by
powerful emotions. We are not the experts in another’s dying experience and we need to approach it with
humility. Truth about one’s situation makes possible communities of affection and trust in which again
we return to hope. If we understand hope only as a future reality, we miss the relational dimensions of
hope. It is ironic that not telling the truth about a medical situation is more likely to isolate a patient and
thereby undermine hopelessness. Each spiritual agenda is unique to the belief system of the person but
there are some more common themes and practices, these have been identified by Anderson as:
remembering, gratitude, grieving, and the waiting time.
Preparing for the End of the Journey
In the process of remembering, the telling of stories helps to make sense of the illness. Story telling at the
end of life validates the freedom for an individual to conclude his or her own story on their own terms.
One of my friends I work with recently had her very frail 90-year-old mother move in with her because
she had “failed” assisted living. The mother is Catholic and has six very different daughters. She was
never an easy woman in particular for my friend to be with; very demanding and self centered, and was
no different in her behavior in her declining health. She kept asking as the different daughters came to
visit, what were their happy memories of childhood, and as they told their stories (which did not include
her) she did not like the answers. Finally, after observing this behavior after a few of the sisters and that
she was more crabby than ever after these visits, my friend figured out what she wanted to hear was that
she had been a good mother. This was actually a point that they all agreed on: that it was not the first
thing that came to mind as they were growing up but as they came up with edited versions they were able
to reassure her of her place in their lives their mother became calmer. Telling stories contributes to the
way people want to be remembered. Telling of stories requires the listener to hear them and a bond of
mutuality is created.
The practice of gratitude is a spiritual attitude formed by the recognition that life is a gift. No matter how
long life might be prolonged, there can always be something more, patients and families often find death
comes too soon. It is thought that being grateful and giving thanks are born out of acceptance of one’s
own limitations in living and dying.
Grieving is an unavoidable dimension of letting go. “How could I not be among you?” There are losses all
the time for the dying person. In dying they are letting go of everything they have loved. It becomes a
“litany of lasts” for patients and families…the last Christmas, the last dinner out, the last lovemaking.
These can be very sad times but it also brings opportunities for celebration and connection to family and
friends as one is intentional in things we take so much for granted. It is a great way to make memories and
acknowledge the special relationship amongst friends and loved ones.
I had the honor of caring for an amazing woman with metastatic breast cancer who had multiple
recurrences over many years. She retired from a career as a lawyer to devote her focus into being a
mother and a wife in her remaining time. I met her five weeks before her death. She told me she expected
she had less than a couple of months, her pain was significant, and her dyspnea great with recurrent
pleural effusions. I convinced her Tylenol #3 was not a pain medication. We got her pain controlled and
her dyspnea eased with a pleurex catheter which eliminated her multiple trips to drain the recurring
pleural effusions, and she continued with another round of chemotherapy because it made sense to her. I
reassured her she could make that decision independently every week, it was a few days from her death
and she had had a bad night with increased pain and her vital signs were showing increased distress. She
looked right at me and said she needed to know if this was it. I answered her honestly it looked like days
and she should take care of what she was waiting on. So she gathered her three teenage daughters, her
best friend, and her husband and she had bought them all stuffed animals she had picked out individually
to hug and to hold when she was gone. The best part as they are telling me this story later is the great four
poster bed that they had all gathered on broke and they all ended up in a fit of giggles.
The Waiting time is an unavoidable aspect and does not only happen in those last few days. I remember a
woman who had metastatic colon cancer. She finished a fairly grueling treatment regimen. She was
widowed and had great friends but was missing that intimate support of a partner at this time. She had a
great girlfriend though who would come to support group with her, and one time it was just the three of
us and she shared that she had deep faith and gratitude, but she felt like she as always waiting for the
other shoe to drop. She had definitely been living with intention; she took the dancing lessons she always
wanted and went dancing on the weekends, took time off and visited family and friends, and worked as
little as possible just to keep her benefits. We explored what mind body techniques might help her with
her gnawing anxiety, she added meditation and massage to her self care with some lessoning of the
intensity. She repainted and redecorated her room in anticipation she would eventually be spending her
last days there. Her disease did not come back for 9 months, she had treatment for another 4 months after
that until it didn’t make sense to her and had her death at home on her terms. The opposite of fear is not
courage but trust, as for our part, our patients are trusting that we will as a team hold and care for them in
this intimate time. Those caring for the dying need to be comfortable with helplessness.
Extending the Support Team and Transitions
How can we best support quality of life in our patients and their families in this part of the challenging
journey? What can you do? It is important to be the one advocating with your care team. Ask the
questions that Singer et al., found to be most important to patients regarding end of life issues.
Are symptoms being adequately
managed?
Are we inappropriately prolonging
dying?
Are we helping them achieve a
sense of control?
Are we relieving burden on their
families, and helping to strengthen
relationships with loved ones?
It is important to become familiar with your palliative and hospice referral sources. All healthcare
professionals can develop effective palliative care knowledge, skills, and attitudes. Patients with
advanced disease should be informed that palliative care is an integral part of their comprehensive cancer
care.
Heyland et al., looked at 440 patients and 160 relations in the acute hospital setting. The purpose of the
study was to describe what seriously ill patients in the hospital consider to be key elements of quality end
of life care. The outcome at 6 months was that 60% had died. The responses of the cancer patients in the
study are shown in Table 2.
If we help our patients with advanced cancer find peace and strength through the lived experience, rather
than live in fear of the inevitable, we may be tapping into inner wisdom and power as symbolized by
myth of the dragon. We see this confirmed in our daily practice by those who do this journey well. I had
a patient whom on her funeral program had the following shared by her family.
“In her own words, Kathy would prefer not to be
remembered for any “heroic battle” with cancer (What’s heroic about undergoing treatment and
trying to live?) but rather for her wonderful family, crazy
menagerie, and terrific
sauerbraten.”
What happens if we as oncology nurses do this well and empower our patients to reframe their experience
and find their inner wisdom and access their inner power. Can we support them in defining meaningful
priorities that add to quality of life, and assist them in finding ways to have a respectful death on their
own terms? I believe we can, I believe we can support them in taming the dragon.
References
Anderson, G. (1992). The Triumphant Patient: Become an Exceptional Patient in the Face of Lifethreatening Illness. Nashville; Thomas Nelson, Inc
Anderson, H. (2006). Living until we die: reflections of the dying person’s spiritual agenda.
Anesthesiology Clin N Am 24; 213-225.
Back, AL, Arnold RM, Quill TE. Hope for the best, and prepare for the worst. JAMA. 2003. 138:439-443.
Brody, H. Hope. JAMA 1981;246:1141-1142.
Callanan, M. (2008) Final Journeys: A Practical Guide For Bringing Care and Comfort at the End of Life.
New York: Bantom Books.
Chochinov, HM et al.(1997) “Are you depressed?”: screening for depression in the terminally ill.
American Journal of Psychiatry 154: 674-676: Abstract.
Connor, S et al. (2007) Comparing hospice and nonhospice patient survival among patients who die
within a three year window. Journ of Pain and Symp Manage; 33:238-246.
Ersek, M. (2001) The Meaning of Hope in the Dying. Chap 24. Textbook of Palliative Nursing. (Eds).
Ferrell, G. & Coyle, N. New York; Oxford Press
Glare, P., Eychmueller, S. & McMahon.(2004) Diagnostic accuracy of the palliative prognostic score in
hospitalized patients with advanced cancer. Journal of Clin Onc. Vol 22 (23) 4823-4828.
Gordon, J. (2008) Mind-Body medicine and cancer. Hematol Oncol Clin N Am 22: 683-708.
Heyland, D.K. et al. (2006) What matters most in end-of-life care: perceptions of seriously ill patients and
their family members. Canadian Medical Association Journal Vol 174 (5) 627-633.
Khatcheressian, J. et al. (2008) ”Futile care’: what to do when your patient insists on chemotherapy that
likely won’t help. Oncology vol 22 (8). 881-888.
Lura, Colleen.(2003) Unpublished, Hope for Remembrances of the Heart. Personal reflections.
Mystakidou, K. et al. (2007) Exploring the relationships between depression, hopelessness, cognitive
status, pain and spirituality in patients with advanced cancer. Archives of Psychiatric Nursing, Vol. 21
(3);150-161.
National Consensus Project for Quality Palliative Care (2009). Clinical Practice Guidelines for Quality
Palliative Care, Second Edition.
http://www.nationalconsensusproject.org
Old, J. & Swagerty, D. (2007) A Practical Guide to Palliative Care 1st edition. Chapt 16 Giving Realistic
Hope. New York; Lippincott
Rakel, R. (2007) Chapter 8, Textbook of Family Medicine, 7th Ed. Downloaded from MD consult.
Singer, P., Martin, D. & Kelner, M. (1999) Quality end-of-life care: patients’ perspectives. JAMA
vol.281 (2) 163-168.
2008
Our Stories: Our Power, Our Passion
It’s the year 2000, and I am at the annual Oncology Nursing Society (ONS) Congress, sitting in a room
full of hundreds of nurses. I consider myself a very experienced nurse manager, and I confess to being
bored and over-confident. As I wait for the lectures to begin, I am certain that I have little to learn about
medication safety in this special session. But today, I will hear a powerful story told by a courageous
oncology nurse and my perspective will dramatically change. I will leave this event with a totally
different view about medication errors, and a deep commitment to do things differently in the setting for
which I have responsibility. I hear the statistics, the theory, and the evidence about how to prevent errors,
and this influences the science-oriented part of me. Then I listen to an oncology nurse, not unlike myself,
tell a devastating personal story about her experience being a nurse who contributed to a fatal medication
error. My heart is touched; the story speaks to me personally and professionally. My passion for
excellence in oncology nursing is fanned, and my attitude toward medication safety is forever altered.
This is the power of Story.
Why do we love stories? Why do I stay up way too late to finish a good book? Why when we hear those
magic words “once upon a time…” do we sit back, relax, and let ourselves be taken to another place?
Stories are a part of all cultures, religions, and professions. They help us to communicate with each other,
and they give us the opportunity to ascribe meaning to our experiences, good and bad. They connect us
as human beings, regardless of ethnicity, age, or culture, and help us understand this thing called “life”.
Look in the literature, and you will find a plethora of articles about stories and narrative. Research articles
describe procedures for narrative analysis (1), and caution about inappropriate use of stories (2). Nurse
researchers describe using storytelling as a technique to man-age cancer patient’s symptoms (3), and use
narrative to understand patient’s perceptions of their experiences (4). Educators use storytelling to help
create insight (5), observing that “reflecting on and evaluating our personal experiences often results in
more learning than the actual event itself.” (6) Steiner (7) reflects on the importance of storytelling in
medicine, and Charon (8) suggests that the practice of medicine requires “narrative competence.” In
2007, ONS featured storytelling as a topic at ONS Congress. Even “Harvard Business Review” has
advice on how to tell stories! (9)
Some authors differentiate between narrative and storytelling, though definitions vary. Typically,
narrative can be as simple as the recounting of an event (for example a diary) while stories have a plot,
i.e., a character, a problem, and an explanation of how the problem is resolved (2). However, in keeping
with the style of most of the literature I reviewed, for the purposes of this article, the terms story and
narrative are used interchangeably.
As oncology nurses, we have the opportunity to add a skill to our repertoire when we tap into the power
of story. To think about this, I find it helpful to use the conceptual framework of “stories that influence
others” described by Annette Simmons (10). As oncology nurses, we are continually challenged to use
our best communication skills to influence others. We may be trying to influence a patient to stop
smoking, or teaching a new nurse about importance of double-checking chemotherapy. We may be
trying to change a physician colleague’s perspective about pain management, or we may be trying to
articulate the need for a nurse navigator role to administration. In all of these cases, we are trying to
influence others, and a story may help us open the door to a new idea. Annette Simmons describes six
different types of stories that influence others. As a conceptual framework, this provides a mechanism
for thinking about the concept of story, and is not intended as a rigid “how-to” prescription. These types
of stories may be woven together in a larger narrative, or parts of these types of stories may be integrated
into a data-driven lecture. The six types of stories described by Simmons are listed below. Details and
examples of the types of stories follow.
-
The “Who I Am” Story
-
The “Why I am Here” Story
-
The “I Have a Vision” Story
-
The “I Know What You Are Thinking” Story
-
The “Teaching” Story
-
The “Values in Action” Story (10)
The “Who I Am” Story
Don’t you love it when you go to the grocery store and the clerk recognizes you and asks about your day?
Giving a glimpse of who you are to your audience, whether it be a single patient or an auditorium filled
with students, helps you to connect with your audience - human to human. Everyone likes to “know” the
people who they interact with. Your story may be a quick line and as simple as saying “When I was in
nursing school, we never learned about targeted therapy” or it may be a conversation about your love of
reading with an anxious patient who is reading a book.Often, the “Who I Am” story is part of a larger
narrative, giving insight into the speaker’s experiences, values, or character. I am reminded of a CEO at a
local hospital who opened a conference with a story that related to his family. The hospital was hosting a
conference on music therapy, and the CEO shared a story about his disabled son, reflecting on the
meaning that music had in his son’s life. The CEO’s willingness to share a short story about a family
situation that related to the topic at hand helped everyone in the audience to connect with him and his
vision of how the conference could benefit all of us.
The “Why I am Here” Story
Ask any oncology nurse why she/he chose oncology nursing, or why he/she stays in it, and you will get a
“Why I am Here” story. What amazed me when I asked that question to multiple oncology nurses was
that I inevitably heard a story about the nurse’s experience caring for a family member or I heard about
an oncology patient who touched the nurse’s heart. In the busy, fast pace of our work days we all face
difficult challenges, and telling these stories to each other can help remind us of why we do what we do.
Stories about “Why I am Here” inspire us in small ways as well as large. A story about the patient
scenario that inspired you to join a committee addressing a quality issue can help energize your coworkers. Your story about taking care of a patient and knowing you made a difference as an oncology
nurse can remind a discouraged nursing colleague about how important he/she is as an oncology nurse.
Like all oncology nurses, I have numerous memories that could be a “Why I am Here” story: the gynoncology patient who told me after her disease recurrence how much easier treatment had been on the
days that I took care of her; the pregnant patient who we didn’t believe would live to see her baby born,
and had 2 wonderful years with her son; the patient who I cried with at support group one evening (how
embarrassing!), but who thanked me a year later for encouraging her to get a port placed. When we take
a minute to re-connect with our personal stories and our colleagues’ stories, we remind ourselves of the
power of oncology nursing.
The “I Have a Vision” Story“
A man came across a construction site where three people were working. He asked the first, “What are
you doing?” and the man answered “I am laying bricks.” He asked the second “What are you doing?”
and the man answered “I am building a wall.” He walked up to the third man who was humming a tune as
he worked and asked “What are you doing?” and the man stood up and smiled and said proudly “I am
building a cathedral.” (10)
Isn’t it amazing how having a vision of where we are going and why we are doing our day-to-day
activities changes our attitude about our work? You don’t have to be the CEO of a company to have
vision – no matter what our work setting, at times we all communicate vision to others. You might be
helping a family member understand a patient’s vision of “quality of life”, or communicating a vision of
excellent nursing care to an entire nursing unit. If you’re facing that common challenge for the oncology
nurse where you’re trying to change someone’s perspective about a situation, it might be time for an “I
Have a Vision” story.”
Elizabeth White, RN, MN, AOCN tells me that she uses stories all the time in her role as Palliative Care
Nurse Specialist. Often, stories can help her to change a vision about the dying process. For example, in
a difficult situation with a non-responsive patient on a ventilator, Liz used a strategy that encouraged the
physician to listen to the family’s story about the patient’s belief system regarding death. The interaction
was so powerful that the ICU attending physician changed his care goal, the patient was removed from
the ventilator, and he was subsequently allowed to die a comfortable, dignified death with the family in
attendance. When the vision was clarified, the solution to a contentious scenario became obvious.
The “I Know What You are Thinking” Story
Stories are a way of talking about things that are difficult or uncomfortable to address directly. In a
research study about end of life perspectives, Young and Rodriguez report that patients often use stories
to talk about their belief systems related to end-of-life care. A story about family’s or friend’s illness
provides a secure springboard for the patient to talk about their personal belief system and their personal
end-of-life wishes (11).
The “I Know What You are Thinking” story is a technique to directly or indirectly address “the elephant
in the room” i.e., the issue that no one will discuss and is on everyone’s mind. As an example, I’ll use a
personal narrative about a patient with end-stage colorectal cancer and his wife. The wife was very
distressed because her husband refused to discuss anything about his end-of-life wishes. She was frantic
and appropriately concerned about finances, power-of-attorney, and other practical issues that would need
to be addressed in the event of his death. The patient was still receiving chemotherapy and al-though it
was not discussed, it was clear to me that he perceived any discussion about practicalities in the event of
his death as evidence of giving up hope.
I happened to be taking sailing lessons during this time, and had the opportunity to use my sailing lessons
as a metaphor to discuss the husband’s fears. As I told him about my sailing lessons, I explained that
when you sail, it takes about 30 minutes to “check out” a boat - assuring that the engine has the right level
of oil, that you have life vests for everyone on board, that you have an emergency tiller, and that there is a
bucket to bail water if the pump fails, among other “checks.” We laughed over the story of my husband
and I needing to use a broken emergency tiller when our boat’s tiller failed, and we hadn’t done an
adequate “check.” Then the patient and I talked about how in our lives, as in sailing, it’s important to be
prepared for bad circumstances, even when we hope for the best. It wasn’t long after this that I learned
from the patient’s surprised wife that her husband had started talking about his end-of-life wishes. I
would like to believe that my sailing metaphor played a role in changing his perspective, allowing him to
address “the elephant in the room.”
The Teaching Story
We know that stories can teach in a way that procedures and data cannot. Stories help us to learn about
things that we haven’t experienced, or may never experience. Our willingness to listen to stories helps us
learn about patient’s perspectives, which may be very different from our personal perspective due to
culture or life experiences. Stories encourage insight, and help us to mentor each other. Think of how
often you have gained clinical insights from your willingness to share a challenging situation or your
willingness to listen to another nurse. Stories do not negate, undermine, or replace evidence-based
practice; stories enhance learning.
Case studies are a good example of a teaching story. For a really powerful case study, use a personal
situation. I can still remember listening to Jormain Cady, ARNP, MS, AOCN at the 2004 Puget Sound
Oncology Nursing Society symposium as she spoke about head and neck cancer. She used her
experiences with her father’s illness as a case study, and I listened so much more intently, wanting to
make sure that if I were to care for someone like her dad, I would have the knowledge and compassion to
be an excellent oncology nurse.
The “Values in Action” Story
The best way to teach a value is to live it. The second best way to teach a value is to tell a story that
provides an example about living the value. Stories about values can help nurses communicate their
values to patients, to each other, to authority figures, and to the community. We communicate our values
when we advocate for healthy lifestyles with patients, when we encourage our colleagues to take a
certification exam, or when we advocate for patient wishes with a physician colleague. Most of us also
have personal experiences that have reminded us about the importance of our values as oncology nurses.
Stories can help reinforce our values.
As an oncology nurse, one of my strongest values is that of individual choice in treatment options.
However, I also struggle within myself and observe in my colleagues that it’s easy to presume that the
choices that we would personally make would be the best choice for someone else. I remind myself of
the following story when I think that I am at risk for not living my value, and I have shared this story
with my colleagues when they have felt conflicted watching a patient make choices that seem unwise.
As a fairly new oncology nurse, I was caring for a patient, approximately 45 years old, who had severe,
often uncontrolled pain. When her pain was controlled, she was quite sedated, which was not an
acceptable situation to her. After months of severe pain, she was offered the option of a nerve block, and
informed that the risk of paralysis in her legs was significant. As a young nurse, I could not imagine why
she would agree to this option. However, when I went to visit her in the ICU, and observed her sitting in
her wheelchair, legs paralyzed, chatting vivaciously with her 3 adult daughters, I learned an important
lesson. I am thankful to her, to this day, for teaching me about the importance of informed, individual
choice.
Thoughts about Stories,
Passion and Power
For me, stories are treasured as a vehicle to remind me about my passion for oncology nursing, and to
remind me that oncology nurses are powerful. Webster’s dictionary includes two definitions of passion
that resonate with me: (1) intense, driving, or overmastering feeling or conviction (2) devotion to some
activity, object, or concept ( 12). I believe that it’s impossible to be an oncology nurse without the
conviction and dedication that characterizes passion. As we tell stories, we have the opportunity to
reflect on our own experiences, allowing us to reconnect to our commitment to our patients and
our profession.
Do oncology nurses have power? Power is a complex subject, and one which is discussed on a limited
basis in the nursing literature (13). Nurses and women may view power with skepticism. In some ways,
thinking about power elicits more questions than answers: As nurses, are we afraid to identify ourselves
as powerful? Are we afraid to be powerful people? How can we control our own destinies as nurses if
we are powerless?
Another way of thinking about power is the concept of powerful practice. Nurse executives brought
together to discuss the concept of power described the attributes of powerful nursing practice. According
to this executive group, nurses who have developed a powerful nursing practice:
• Acknowledge their unique role in patient and family centered care.
• Commit to continuous learning through educations, skill development, and evidence-based practice.
• Demonstrate professional comportment and recognize the importance of presence.
• Value collaboration and partner effectively with nursing colleagues and other disciplines.
• Position themselves to influence decisions and resource allocation.
• Strive for character, compassion, and to inspire.
• Help other nursing voices to be heard and mentor novice nurses.
• Evaluate organizations according to mission, values, and commitment to diverse perspectives. (13 )
As I read the characteristics of powerful practice, I think to myself that this is power that I can embrace.
Powerful stories may help us practice as powerful nurses, enhancing our roles in promoting excellence
in patient care, community health, and advocacy for nursing.
So You Want to Tell Stories…
Where do you find stories? Listen! They are all around you. Reflect on your own observations and your
own experiences – you too have stories to tell! Here are a few suggestions for telling a good story:
• Listen for stories, and watch other people tell stories.
• Assess your audience, whether it’s an individual or a group. Read audience responses as you go.
• Consider asking permission to tell a short story if you doubt that your audience is listening. Timing is
everything
- if your audience is a physician in a hurry, this might not be the right time.
• Respect your audience. Don’t tell stories that “talk down” or might hurt someone.
• Powerful stories often include struggle or conflict. The strategy that succeeded after several false starts
is much more interesting than the one that worked the first time.
• Detail can add to your story, as long as you don’t lose the listener in the detail. The detail about how
someone looks or the way someone acted can enhance your listener’s ability to picture the scenario.
• Exaggeration is part of the fun – after all, it’s your story!
• Perfection is not required – your story doesn’t have to be the same every time you tell it.
• Practice, practice, practice. Practice telling a story to your family or friends. Practicing will boost your
confidence, it’s fun, and practice will improve your storytelling skills!
“Once upon a time…” can create magic. Your stories can inspire, educate, connect people, provide
insight, and re-energize you and your colleagues. Tap into the power of your stories. Use them as a tool
to change perspective, and to change behavior. The world of oncology nursing is rich with stories and
the opportunities to tell stories. My challenge to you is to take a risk– tell a story to your family, your
friends,your colleagues, your patients. Let your stories re-connect you with your passion for oncology
nursing and let them help you embrace your power as a nurse. The magic of “once upon a time”
is yours.
Even as a little girl, I have always loved to talk. I offer the following twist on the “Serenity Prayer” (14)
for nurses like me who love to talk, but who also know the value of listening.
God grant me the serenity
To listen when I may learn,
Courage to speak when I might teach,
And the wisdom to know the difference.
- Susan Drummond, 2008
References
(1) Pellico, L. H., Chinn, P.L. Narrative criticism:
A systematic approach to the analysis
of story. Journal of Holistic Nursing, 2007, 25
(1), 58-65.
(2) Eva, G., Paley, J. Stories in palliative care.
Progress in Palliative Care, 2006, 14 (4): 155-164.
(3) Crogan, N., Evans, B., Bendel, R. Storytelling
intervention for patients with cancer:
Part 2 – Pilot testing. Oncology Nursing
Forum, 2008, 35(2): 265 - 272.
(4) McCance, T.V., McKenna, H.P., Boore, J.R.P.
Exploring caring using narrative methodology:
An analysis of the approach. Journal of
Advanced Nursing, 2001, 33(3): 350-356.
(5) Wolf, A. Telling tales in school: The importance
of storytelling in medical education,
Dalhousie University Connection, 2004,
winter.
(6) Wittenberg-Lyles, E., Greene, K., SanchezReilly, S. The palliative power of storytelling:
Using narratives as a teaching tool in end-oflife
care. Journal of Hospice and Palliative
Care Nursing, 2007, 9 (4): 198-205.
(7) Steiner, J. JAMA, 2005, 294(22): 2901-2904.
(8) Charon, Rita. Narrative and medicine.
New England Journal of Medicine, 2004, 350
(9), 862-864.
(9) Different Voice. Storytelling that moves
people: A conversation with screenwriting
coach Robert McKee. Harvard Business
Review, 2003, June:5-8.
(10) Simmons, Annette. The Story Factor: Inspiration,
Influence, and Persuasion through
the Art of Storytelling. Basic Books: New
York, 2002.
(11) Young, A., Rodriguez, K. The role of narrative
in discussing end-of-life care: Eliciting
values and goals from text, context, and
subtext. Health Communication, 2006, 19
(1): 49-59.
(12) Webster’s Ninth New Collegiate Dictionary.
Merriam-Webster Inc.: Springfield, Mass,
1989.
(13) Ponte, P.R., Glazer, G., Dann, E., et.al.,
The power of professional nursing practice
– an essential element of patient and family
centered care. Online Journal of Issues in
Nursing, 2007, 12(1).
(14) Wikipedia, accessed Dec 7, 2008. The
Serenity Prayer is attributed to Niebuhr,
R.1934, revised by Alcoholics Anonymous.
2007
Why I am Still an Oncology Nurse:
Breast Cancer Prevention Update
Cathy Goetsch, MSN, ARNP, AOCNP
Virginia Mason Cancer Institute
As I considered what I might share with my colleagues in this year’s McCorkle Lecture, my mind turned
to how long I have been an oncology nurse and how far we have come in that time.Then I recalled when
I first had awareness of breast cancer.
That Was Then:
I remembered my 8th grade health class and the report I did on breast cancer. It was 1963. I didn’t
know anyone with breast cancer, or at least I didn’t know that I did. Nobody talked about it, but I know
now those ladies in church with elephantine arms were survivors. They had been treated with the
Halstad radical mastectomy with full lymph node dissection, a procedure that was still standard of care
in the U.S. into the early 1960s. one in ten women were destined to develop breast cancer, but only 50%
of these women survived their diagnosis. Thanks to ongoing research and the brave women who
participated in it, we’ve come a long way baby.
I wanted to put this vast change into perspective of other changes over the same time frame. So I
decided to present a snapshot of mainstream of life of the time. Below I share some of the things that
were normal in 1963 and those that were innovative or novel.
The television was a big part of our lives. It was becoming the major fixture of information and
entertainment in our lives. Most of middle class America watched TV every day. In 1963 we watched
the first live broadcast from space. Network news lengthened to 30 minutes and the majority of
Americans watched it every night. Outer Limits and General Hospital debuted. Leave it to Beaver
ended a six-year run of portraying what we thought family life should be.
In sports the Brooklyn Dodgers finally triumphed over the Yankees in the World Series. In music the
Beatles and Roy Orbison topped the popular charts while Johnny Cash’s Ring of Fire held the country
music pinnacle position. The movies that year included Cleopatra -- the most expensive film ever made
to that time, The Pink Panther opened, and the foreign film 8 1/2 was first seen.
It only took 5 cents to mail a letter. Prayer was banned in schools.ASCII uniform computer code was
introduced, which opened the door to having them “talk”to each other.The Smiley Face was conceived.
The books Where the Wild Things Are and Clifford the Big Red Dog were first seen. Locally the second
Lake
Washington Bridge opened and was named after past state governor Albert D. Rosellini.
Political life was tumultuous as always.The Civil Rights movement was gaining momentum.Martin
Luther King, Jr. made his “I Have a Dream” speech. Alabama's governor George Wallace blocked
federally mandated desegregation of the University of Alabama prompting the president to send in the
National Guard to enforce is enactment. Medger Evers was assassinated. In Washington, D.C. the
congress passed
the first Clean Air Act and the Equal Pay Act for Women.
The thing most people remember about 1963 is the assassination of President John Kennedy.We shared
the
national tragedy in real time through national TV coverage. Unfortunately we also watched together as
Jack Ruby shot Lee Harvey Oswald on live TV.
In the world of medicine many advances were occurring. In 1963 the first artificial heart machine was
used
during surgery.The Au (Australian) antigen was identified that led eventually to identification of
Hepatitis B. Valium received FDA approval and became the most prescribed drug. The American Heart
Association began its antismoking efforts. In the cancer world, the role of estrogen in breast cancer was
theorized, and clinical trials on mammograms were begun. Prior to this time there was no early detection
for breast cancer. Women found a lump and went to surgery not knowing whether they would wake up
without a breast. Diagnosis was made in the operating room.The Halstad radical surgery that had been
done since the 1890's was beginning to be challenged as the only treatment for breast cancer. Radiation
in addition to simple mastectomy was making inroads as appropriate care.
This is Now:
Mammograms are widely available and we know that annual screening has helped to dramatically
reduce the death rate from breast cancer. Additionally, research has helped us recognize risk factors for
breast cancer that help us identify who is at risk and how high of risk (See figure 1).
We also recognize breast cancer initiation as a stepwise progression that starts and the DNA level in
the nucleus of cells. This paradigm shift began in the 1960s as breast cancer was finally recognized as a
systemic rather than a local disease. The Iceberg analogy has been used to conceptualize how the
transition from normal to cancerous cell occurs (See figure 2).
We understand breast cancer is a disease of transformation and proliferative progression that happens
over time. In most cases about five years of growth with about 20 cell doublings are required before the
size of 1mm is reached where mammogram can detect an abnormality. This argued for the effectiveness
of sequential, annual mammograms to detect early breast cancers. Clinical trials showed efficacy of
annual
mammogram screening, but controversy arose over what was the cost effective age at which to start
screening. At the same time as mammogram efficacy was being studied, the National Surgical Adjuvant
Breast and Bowel Program cooperative study group (NSABP) was publishing data that showed modified
radical mastectomy compared to breastpreserving partial mastectomy followed by radiation therapy had
equivalent survival (See figure 3).
The ability to distinguish what constituted elevated risk of developing breast cancer and who had
elevated risk was being studied along with the mammogram effectiveness. The understanding of disease
progression let to landmark chemoprevention research in the 1990s examining the ability of the selective
estrogen receptor modulator (SERM) to decrease breast cancer risk. Results from the NSABP Breast
Cancer Prevention Trial (Protocol P-1) led to FDA approval of tamoxifen for breast cancer risk
reduction in high-risk women 35 and older. Tamoxifen decreased risk of both invasive and non-invasive
breast cancer by
49% vs. placebo when used over a 5-year period by women with elevated breast cancer risk.
A follow-up chemoprevention trial, STAR (Study of Tamoxifen and Raloxifene, NSABP Protocol P-2)
was published in April of 2006. It showed the SERM raloxifene had benefit equal to tamoxifen in
decreasing invasive breast cancer in post menopausal women with the same elevated risk (See figure 4).
This now gives women with elevated risk choices about how to decrease breast cancer risk. For
premenopausal women, tamoxifen is safe and effective, with higher risk leading to higher benefit. For
post menopausal women, raloxifene showed equal benefit in breast cancer risk reduction with out
increased endometrial cancer risk. Both drugs increase risk of thromboembolic events with risk
outweighing benefit in women 70 and older. Raloxifene has slight but statistically significant lower rates
of pulmonary emboli and deep vein thromboses than tamoxifen. The search continues for better breast
cancer risk reduction.The next class of medicines likely to be studied in prevention is the aromatase
inhibitors (AIs).Acting to block the conversion of other steroid hormones into estrogen, they would only
be considered appropriate for postmenopausal women without the high ovarian estrogen production of
premenopausal women.The AIs
have a different side effect profile than the SERMS, without the increased clotting risk of SERMS (See
Figure 5 on next page).
Another method of identifying women at high risk of breast cancer that did not exist in 1963, is genetic
testing for cancer predisposition mutations. Commercial testing for some gene mutations is
commercially available.Women with these deleterious gene changes may have 40-87% lifetime risk of
developing breast cancer.Genetic counseling and testing can help identify these women.
There are options for breast cancer risk reduction in women at such high risk. Increased screening,
including beginning annual mammograms at age 25 or 5-10 years younger than the youngest breast
cancer seen in the family, alternating every 6 month with annual screening breast MR. Surgical options
for risk reduction include prophylactic m a s t e c t o m y with a 90% risk reduction, and prophy l a c t i c
oophorectomy with about a 50% breast cancer risk reduction if performed premenopausally. Lifestyle
changes such as regular exercise, maintenance of desirable weight, limited alcohol intake, and healthy
diet all have shown some benefit for some groups.
The challenge is still before us. Although marked progress has been made in decreasing morbidity and
mortality for breast cancer, more studies need to be done, more people need to be educated about risk
reduction, and more women need access to screening. All these efforts will need nursing effort and
intellect to accomplish: That's why I'm still an oncology nurse.
2006
Help Wanted: Seeking same to take my place!
by Susan M. Ford
McCorkle Lecturer
As the 2006 McCorkle lecturer and the nursing program chair of a local college, I thought
about the symposium theme and what would correspond with this lecture. These came to
mind: 1) Nursing Shortage, 2) Next Generation of Nurses, and 3) New methods of Teaching.
On sabbatical leave, feeling a bit lazy, and I can talk about anything I want, I decided to talk
about guys instead! Reflecting upon the direction of both my life in general and my nursing
career, I came to realize it was always a person of the opposite gender that made an impact
on what direction I would take. I want to share these men with you and tell you how they have
guided my nursing career.
Be a Nurse
Dad, I got more from him then just my nose! Being born a Jones, need I say more about my
behavior and personality? Mom (the woman he married) is the one who said become a nurse;
you will always have a job. I didn't understand the meaning - I thought she meant if you get
divorced and have to support yourself and children, you would have a job. I have come to
realize she meant since you will work most of your adult life it is easier to have just one job - be
a nurse.
Attend an ADN Program
My husband, Jerry - we have been together for 29 years formally, 34 informally. When we
married a coin was flipped for who got to go to grad school - I got the 'go to work' side of the
coin. This meant attend a community college, become a nurse and go to work.
Nurses Listen
Early in my career I had a cancer patient code, we thumbed on his chest - the doc showed up
asked us what we were doing - told us he was dying so that was stupid to have coded him.
After it was over, Craig, the house supervisor, took me to a quiet area, sat silently, waited and I
cried.
Education, Maybe
I never went to UW's nursing school without becoming pregnant. Steph was the BSN baby
and Pete is my MN baby. Peter Ford traveled to Anaheim as a baby for the first OCN test.
Renewing this year, I realize I've been an OCN for 20 years. His birth began my direction
toward education.
Who is the Nurse?
Working for Virginia Mason I had the opportunity to work with Ryan Iwamoto. I admire him for
both his expertise and mentorship. When talking to patients, he always said “I am your
Registered Nurse” - I thought, well duh? But I have come to learn it isn't always obvious who
is the registered nurse - and it is our responsibility to identify that fact each and every time.
How Do We Educate?
Obtaining a full-time job at Tacoma Community College, John Miller was assigned to be my
mentor. Despite my total lack of understanding of academia, he managed to keep me going in
the right direction. John was into different teaching styles long before they were popular. I
know where we will be as a department in 5 years based upon where he is now.
Nurses Can't Do It All
Dave Howard is the guy I would die for! We team teach one if not the only nursing/counseling
classes on Death & Dying across the country. What started as one section a year has grown
into teaching 5 sections together a year. As program chair and faculty, I can't do it all.
Together we demonstrate how to work as an interdisciplinary team.
My new guy Stan, a human patient simulator! Why have I chosen this guy? …because we
have a nursing shortage, there is a new nurse (student) out there, and this is the technology of
the future. So maybe I will talk about those things after all.
The Nursing Shortage
Speaking to what is happening on a world-wide scale, would take the entire time, therefore, I
will limit my remarks to the nursing shortage in the United States, Washington State and our
ONS chapter in particular. A Health Workforce Analysis Study was conducted in 2002 by the
US Department of Health and Human Services. The nursing shortage was predicted to begin
in 2007. Unfortunately in examining the data collected, they found the shortage already
started in 30 out of the 50 states in the year 2000(1). Our state was identified as one of those
shortage states. The study predicted the shortage will include 44 out of the 50 states and the
District of Columbia by the year 2020. The factors contributing to the shortage include: the
decline in relative earnings, alternative job opportunities, decreasing graduates, and retiring
RN's. What I will explore is just a small piece of the puzzle. I plan to discuss the situation of
the RN's retiring - those choosing not to retire - and who, if anybody, is coming along after us.
As women growing up we were told, you are beautiful, unique & intelligent. Our interpretation you can do it all, and we did! My generation of nurses learned the profession and remained in
the workforce; this is not how it always happened in nursing. My mother is a nurse who
attended the Providence Hospital School of Nursing over 55 years ago. When mom went to
school, nursing was one of the three jobs open to women - secretary, teacher, or a nurse.
Secretarial jobs prepared you to work for men, teaching prepared you to work with other
people's children, and nursing gave you the skills to make a house a home, providing children
and husband with a happy, healthy environment. A woman schooled, worked for a couple of
years, perfected the nursing/nurturing skills, and turned to a new career - motherhood. This
photo illustrates my mother's nursing cohort five years after graduation. Former nurses, new
career wives and mothers!
We, the girls who grew up next, were going to be different. With all the attributes of our
mothers, we would use them to our fullest potential. We learned to nurse, and with this
education stayed in the field to practice our careers. We added family and motherhood TO the
mix, not in place of it. We didn't want everything; we just wanted to do everything.
At this time I invited everyone to stand in the audience. This exercise helped visualize the
extent of our dedication to the nursing profession. Individuals were asked to sit according to
the number of years they nursed. One person in the room sat at 5 years. Many began to sit
after 25 -30 years of nursing. Three women were left standing, having been nurses for over 55
years! The question - why go out and recruit more nurses when all of us are still working?
One reason nurses work longer is because of what we have to offer in both our nursing
expertise and education. The number of years of nursing experience totaled at the luncheon
was over 2,900! Yet, should we all retire this weekend, see how many years of nursing
expertise would be lost. Though it will not happen that rapidly, it will occur.
The DHHS study compared projected losses against projected new entrants. The RN supply
will grow only 1.3 percent between 2008 and 2012 then, we will no longer see growth, rather a
decline of 1.9 percent between 2016 and 2020. Our general population is aging, better
methods to treat people prolong life, and the aging nurse population means our country will
need more nurses, sooner as opposed to later. Today our country needs 2,100,000 RN's and
we have roughly 2 million. That is a current deficit of 100,000 nurses. Because the demand
for nurses will increase as the supply decreases, by the year 2020 when we need care, our
best bet will be to go to the mirror, not ring the call bell!
This chart shows the age of nurses over time. The first line illustrates the age categories of
nurses in 1980. The spike indicates the largest number of nurses were between the ages of
25 and 29. This age category is where I fell on the chart. Where did you fall on the chart in
1980? Think about our collective nursing expertise 26 years ago? It would not have been
2,900 years. Now look at the second line, the year 2000 (six years ago), the age of nurses
continues to shift, with the greatest number of nurses 40 to 49 years old. If the 25 year old
nurse in 1980 becomes the 45 year old nurse in 2000, we have a group coming into the
profession just behind us. The line for 2020 anticipates that a majority of the nurses will be
between 45 and 59 years of age.
What does this means for Oncology Nursing? Data provided by the ONS National office about
our chapter is drawn on the chart. Incidentally our chapter mirrors the national ONS figures
almost exactly. Of the 781 Puget Sound nurses, 711 gave their age! Our PSONS line on the
chart it is the same shape as the 2000 line indicating the age of all nurses across the country.
Our chapter reflects the aging national nurse workforce. Moving everything forward by 6 years,
we see the same rapid slope of decent for Washington State oncology nurses in the year 2026.
Today in Washington State there are 5,100 FTE nursing positions unfilled! Solution - just
make more. Educators are working as fast as they can. In 2005 the combined efforts of 31
schools of nursing, 21 of those being community colleges, produced less than 1,200 new RN's,
we aren't reducing the deficit. Faculty members are aging too. Nancy Woods, dean of UW's
school of nursing, predicts 40% of the nursing faculty will retire within the next 5 years! My
situation and other colleges are similar. So no matter how much money is given to higher
education, at this rate we can't keep up with the imbalance! When I turn 71 in 2026 - my
chronic disease of choice shouldn't be cancer - because the question becomes, who will care
for us?
Who is coming into the profession? In 1980 the average age of the nursing graduate was 28
years old. Now it is 33 years of age. In 1980, 20% of our nursing profession was under the
age of 30. Now it is less than 9%. Students are not young, directly out of high school, both
community colleges and universities are attracting an older student, and many are choosing
nursing as a second career meaning our novice workforce is older. This is a trend I am very
concerned about. I think we will see less and less young people in our profession. Some think
maturity adds to the professionalism of nursing. Rather, as the older student becomes the
nurse, they may be more mature, but still lack the nursing experience - we have the situation of
looking like they know nursing, but they are just as novice (and frightened) as the 22 year old
grad.
To review - nurses have stayed in the profession longer; those choosing nursing are older,
putting us all in retirement mode at about the same time. We have a very experienced
workforce - that is, until we need the services ourselves! What can we do as a profession to
ensure continued quality of both nursing in general and specialties like oncology nursing? My
thoughts, we need to encourage, welcome, and embrace younger people into nursing.
The New Nursing Student
Who are we? A generation of people and what does that mean? A group of individuals held
together by like upbringing and values. Examining the theories of generational communication
and learning styles may give us the answer to the question above. It is a way to view people
from the time frame of when they were born (about a 20 year span of time).
o
Veterans or Traditionalist - those born between 1922 and 1942, during the depression
era and in times of war.
o
Baby Boomers- those born after WW2 ('43 - '59) when soldiers hadn't seen their female
companions in a while, hence the prolific spike!
o
Generation X - those born between 1960 and 1980, and we will describe why they are
X's later.
o
Millenials - children who have come of age during the turn of the century, those born
since 1981.
Why is it important to look at Generational differences? Our frame of reference is different
growing up under different conditions. With each generation our experiences help shape our
values (Zemke, 2000). Typically, presenters discuss generations, using the heroes of the
group, analyzing styles of communication, values embraced, and learning styles according to
the generation's heroes - instead of heroes we are going to look at another group of important
influence in our daily lives, who we watched on TV before and after school?
The Veterans
They didn't grow up with TV. The radio and books shaped their values. Growing up as
auditory learners, this is reflected in their learning style: you sit, pay respect to the presenter
and listen to the expert. This is who the traditional lecture halls were made for in colleges. Job
wise - longevity meant competence! Pride is having been at the same workplace for over 20
years. Other values they hold: hard work, dedication & sacrifice, respect for rules, duty before
pleasure and honor.
The Baby Boomers
I grew up with JP Patches and Gertrude! They helped to shape my values: optimism, team
orientation (we not I), personal growth & gratification, and involvement. Look at the personal
growth of our chapter and the number who have advanced degrees. We feel committed to
share our knowledge not only with each other, but with our patients - remaining in nursing
practice. We too, hold a commitment to our employers - when the Reduction in Force of
Clinical Nurse Specialists and Educators happened in the late '80's and '90's, it was taken
personally (Thomas, 2004). We felt we had done wrong, not that this was purely an
economical decision. We like to participate yet, hold true to the “see one, do one, teach one”
concept. Read about it, watch it - then and only then, do it! Again, we have personal pride;
what ever we do it has to be good. Sometimes we may resist doing because of our fear of
'lack of perfection'. Think about this, when your computer or cell phone goes on the blink, do
we play with the item - no, we contact either our own child or the one next door!
Generation X
The 'in between' generation - hence the X. During their formative years, our country
didn't have an outside enemy, rather it was us! The Berlin wall came down and so did the
Nixon administration with the Watergate scandal. They can't imagine you go to war (Desert
Storm) for more than a couple of days! They learned to appreciate diversity from TV because
anybody could live on Sesame Street. Ilisa Halpern of ONS showed us in the morning session
how School House Rock made learning fun, informal and with melody! They are self-reliant
yet, pragmatic. Show me how to do it and how it will benefit me! Do you want to tell me about
it, read it, or better yet just download it! Make up your mind and don't waste my time.
Job wise - get it done then go have fun! If pay is better somewhere else, that means more fun!
I remember the idea of floating to another nursing floor was a dreadful thought. Many of these
people WANT to work for an agency, so they can be on different units in different places.
Travel, work and see the world!
Millenials or the Nexters
The true multi-taskers - born hardwired! They surf MySpace, instant message, text on
their cells (while talking on them), while watching TV and playing WOW - incidentally, they are
plugged into an Ipod! Team oriented - look at who they watched on TV. Teenage Mutant
Ninja Turtles, Transformers and the Masters of the Universe - teams working together for the
betterment of mankind. It was once thought computers would cause them to become isolated,
but the opposite happened they are more connected to each other than any other generation!
My generation birthed and raised them. They want for nothing and have the confidence to
achieve anything. They live diversity; names no longer indicate your ethnicity or gender. As
parents we couldn't totally protect them; 9-1-1 does not mean call for help to this generation,
rather it marks a beautiful sunny day when we realized living in the U.S. makes us vulnerable
like everyone else, this gave them a sense of moral duty.
Here is the ONS data showing our chapter breakdown into the different generations. Few
remain from the Veteran's generation (10 members), most of us (400 members) are boomers!
The Gen X'ers will have quite a burden with our retirement; there are only 289 to do the work
of the boomers. Here is the critical piece, 9% of nurses overall are under the age of 29 - only
12 PSONS members are Nexters, that is less than 2% of our group, and none of them are
here today! The person I spoke with at ONS felt nurses don't choose Oncology 'til they have
practiced for a while. I question the validity of this statement. I decided to join ONS, defining
myself as an oncology nurse at 25 years of age! Judy Kornell made that choice when she was
22. I don't know what to think. But, I do know we have some recruiting to do! Therefore, we
need to determine what makes a good nurse. As the baby boom generation, the values that
made us good nurses were: optimism, team work, health/wellness/youthful orientation,
importance of personal growth and recognition, our challenge (advocacy) of authority. Will
these attributes make the younger generations good nurses? We have to remember, they are
not us - just as we were not my mom and her generation. We need to honor what the X'ers
and Nexters have to bring to our profession.
The Gen Xer's are self reliant; they need opportunity. Technology, they get it and have a
willingness to go outside the box. They demand balance, why? Because they watched what
happens when WE didn't have it. At Kathy Bartholomew's session yesterday, someone said
younger physicians seem less uptight and formal, maybe helping the RN/MD relations. This
generation is more informal, and all they ask is respect for being close to 40 years old, maybe
they are grown ups and do know something.
Nexters are confident - yearning for nothing, because, we their parents gave it all to them!
They are not naïve, they are street smart - knowing good and evil, rich and poor; they will tell
you what they know… if you ask the right question. They are very social and optimistic, yet
they also have seen pain on TV- in real time. By having had it ALL, and seeing what can
happen to it, they realize it is their duty to keep and protect it - these are the attributes that we
need to keep in mind when encouraging them to take our place.
How do we entice these generations of people into nursing as a first choice? The difference
isn't what to teach, but how they learn. Look at us, the teacher is the expert. My objectives tell
what I want to teach, they don't tell what you are learning. We have to look at learning of the
student, not teaching by the instructor. They are doers not lookers - they have enthusiasm, the
ability to move quickly (like we once did), and they can multitask - they need guidance to
attend to certain details, and then we will see - critical thinking!
Retention, we have to figure out what they want and what they need. As their parents we
praised their achievements and told them they can have everything and anything - it can't stop
there. We need to give them recognition for what they know and do, they watched us work
and they know they want time to play. They are social and need to communicate and work
together; we have to structure the work environment to reinforce teams over the individual, not
the other way. There is good and bad to us baby boomers; we are massive in number continuing to work so the expertise of nursing continues to increase. The downside is that we
will retire - and along with the rest need nursing care. Additionally, if younger nurses are not
mentored behind us that precious expertise will be lost.
Human Patient Simulation
As young learners, they are engaged. Research demonstrates that we actually retain
knowledge to a much high degree when we are engaged in the process, not an observer of the
process (McPhail, 2005). Clinical simulation, a teaching methodology of the future fits here.
Stan D. Ardman, (standard man), a computerized human patient simulator, is a preprogrammed 33 year old healthy male. He is part of a family of five 'living' in one computerized
body developed by the METI Company. Human Patient Simulation (HPS) is a method to learn
what will happen to people getting health care, before we actually touch them. Mannequin use
is not new in health care teaching programs, many of you practiced on full size mannequins in
the practice lab. You learned IV access on good 'ole Chester Chest - a 'Partial Task Trainer'.
'Partial Task Trainers' are used to learn specific procedures, such as dressing fake wounds.
They are great tools used to develop competency in psychomotor skills, which require
repetitive practice.
Some may have interacted with a 'standardized patient'. A paid individual given an 'acting role'
interacts with fledgling students, multiple times in a row. Standardized patients help one learn
how to communicate bad news or how to touch 'private parts' so you know what the real thing
feels like. The draw back - you are always training patients as well as training providers. HPS
uses a computerized mannequin to run a patient care scenario. A heart beats, bowels gurgle,
and they blink, talk and even throw up! Advantages are you don't have to pay him, nor teach
him the scenario - just decompress him after each use! The programs are complex - scanning
a bar code tells the computer what type of medication was just given and the program runs a
protocol making the body's physiological parameters respond. In one minute the heart rate
goes up, the blood pressure goes down. Catherine Handy talked yesterday about the 4% of
people that have a reaction to nanoparticle albumin-bound paclitaxel, you can program 4% of
your patient scenarios to do the same - react differently.
Simulation is not new. The aviation and the Department of Defense starting using simulation
back in the early 1900's. This is how pilots learned to drop bombs on their enemies. Heath
care has low volume, high risk situations that need to be practiced, too. Anesthesia, in the
1960's, is where medical computerized simulation started. Creative nursing schools and
clinical nurse educators have used mannequins in the lab, attempting to simulate dressing
changes with a dab of red food color on the dressing. We are now engaging in the use of
mannequins not just to train tasks, rather to help students problem solve. Skeptical like I was
at first? We all have been involved in patient simulation - CPR Annie, the Laerdal patient
simulator.
HPS has much to offer nursing. Reality can be dangerous; it offers patient safety. Rehearsed
in the safety of a simulation room - a patient can die, so that students find out what the
consequences of their actions would have been. Practice builds confidence. Imagine a
student going on to a unit where the staff has over 100 years of nursing experience - it is
intimidating. Simulation gives the 'suspension of disbelief' so when faced with the situation of
real people, the student can better and more confidently handle an event. Errors can be
expensive; practice in situations builds competence. At Ohio's Riverside Methodist Hospital,
staff practiced a low volume, high risk procedure in the simulation center. Nurse educators
said you probably won't ever see 'this' happen; well 'it' did happen on the next weekend to a
very young nurse. She remembered the scenario practiced, called the doc in the middle of the
night with the findings and saved the guy's life!
People make the erroneous assumption that simulation is a way to teach tasks. Rather it is a
method to help the learner put it all together. This is the tool to take problems out of the
textbook, out of the 'case study' and put it in a touchable environment. Our younger
generations are motivated to try things, they love technology, and instant feedback from the
mannequin will drive them to learn. Given the opportunity to examine HPS around the state
and the country as part of my sabbatical leave, I have learned that buying the body does not
ensure good learning. Quality simulation programs need:
o
The computer - $30,000 to 120,000 a piece is the range for mannequins
o
Dedicated staff - good centers have full time lab personnel
o
Operation expertise - people need to embrace technology or the item sits
o
Space and supplies - the space to get around it, a compressor, computer, bed - and
suspension of disbelief
o
Scenario ideas - the stories, what are the situations to solve?
If this intrigues you, follow the remainder of my leave and simulation site visits at
www.87ord.blogspot.com Simulation does not stop at graduation, what does it offer the
practicing nurse? Hospitals are starting to buy simulators. Imagine practicing these scenarios
before they happen…
o
An IV extravasation
o
MD confrontation
o
Your first death
Human patient simulation is an opportunity to share your passion for nursing. Find out if your
facility is planning to get a simulator, or one of your local colleges? You have much to share.
We are looking for stories - what scared you on that first day, what do new nurses need, bring
us these ideas. Think of what you know - do you want it all lost when you retire - pick a new
nurse and become a mentor. Our expertise is awesome, we are good, and that is what makes
us scary! Remember when you were new, would you have reached out? Neither will they, we
are the ones who need to connect!
Those before us reached out and connected. They stepped aside when we stopped wearing
caps, they stepped aside when we thought scrubs would be easier to work in, now what are
we willing to compromise? I hope I have made you more aware of what our future will look
like if we do not take action to bring young, spirited and energized nurses into the profession. I
thank you for the contributions you have all made to the profession, now it is time for us to give
to ourselves - we need to congratulate ourselves on work well done, and plan strategies to
ensure that it will continue into the future. If it isn't fun anymore hand it over, if it still is fun -
empower those to follow with the same sense of fun and passion you all demonstrate for our
profession, our specialty and our chapter!
I want my obituary to say I was a nurse, not that I dropped dead in the middle of my nursing
shift.
I want to find a nurse to fill my shoes, long before my children find me filling my pants!
We have much to offer, let's pass it on before we pass on!
References:
1.
2002, Projected supply, demand and shortage of nurses: 2000-2020. U.S. Dept. of
Health and Human Services, retrieved: 1/2/06, website:
ftp://ftp.hrsa.gov/bhpr/nationalcenter/rnproject.pdf
2.
Thomas, S. 2004, Transforming Nurses Stress and Anger: Steps toward Healing. 2nd
Ed. Springer.
3.
Zemke, R. et al. 2000. Generations at Work: Managing the Clash of Veterans,
Boomers, Xers, and Nexters in Your Workplace. AMACOM.
4.
McPhail, C.J. 2005. Establishing and Sustaining Learning-Centered Community
Colleges. AACC.
Acknowledgements:
o
US Dept Health and Human Services
o
ONS
o
METI & Laerdal
o
Penny Lane Best, TCC
o
TCC Nursing co-hort, Sept 2005
o
Photos.com
o
Framingham wines - Blenheim, NZ
o
Smash mouth
2005
NOT FOUND
2004
NOT FOUND
2003
Taking a Risk and Sharing Our Creative Side
Judy Peterson, RN
NexCura
I am honored to have been chosen by my peers to present this lecture and I thank you for being here. I believe
what I have to offer you today are merely reflections of what I have learned from you my nursing colleagues.
much of
My goal is for you to think about some strategies for applying and sharing creativity in your own nursing
practice,and perhaps challenging yourself to take risks as you do that. I hope my talk will stimulate your thinking and
move you to action.
First I want to say, I don’t pretend to be an “expert” on the concept of creativity, (and believe me there are many out
there who define themselves as an expert on this topic). I am an oncology nurse, like you, interested in advancing my
profession, improving the care of cancer patients and today, sharing with my colleagues; this is just the topic through
which I’ve chosen to explore and share my thoughts with you.
“All of us yearn to be creative, but few of us feel we truly are” (Howard Hendricks, Color Outside the Lines).
I believe that all of us can foster the creative spirit in ourselves and share that with each other. There are untapped
possibilities in each of us. Amazing things can happen when we look with a different perspective; when we go beyond
what is comfortable and predictable.
Defining Creativity
The dictionary defines creativity as “The quality of being able to produce original work or ideas in any field” (Funk S
Wagnalls, 1995). I can agree with that, but I believe creativity also means taking something we do all the time and changing
it a little or adding a new twist to it.
Gilmartin, writing about creativity describes creativity as a “process of becoming sensitive to problems…identifying the
difficulty; and searching for solutions” (Gilmartin, 1999). I think of nurses as constantly challenged to find solutions and
yes,we are being creative! We’ve had to be creative to solve patient care problems with ever shrinking resources.
Another nursing author, Hall says, “One of the greatest enemies of creativity is the inner critic. It is vital that nurses work
with gentleness and respect toward themselves, and honor their many abilities and strengths” (Hall, 2001).I’ve got one of
those inner critics; I bet many of you do too. Many times as I thought about this talk my inner critic told me I didn’t have
anything to share, but here I am, taking the risk that you will hear something today that will inspire you to think about your
own creativity!
Who are creative people?
Think of someone you know whom you consider creative.Why do you consider them creative? What characteristic is it that
makes you identify them as creative? I bet you have some of that in you too.
When we think of a creative person we often think of the super artists, creative geniuses who paint pictures and sing songs
and write volumes. Personally I don’t know a lot of nurses that are creative in those very artistic ways but, nurses are creative
people in many other ways, that’s you,that is the person next to you.
What are some of the characteristics of creative people that came to your mind?
Here is the list I came up with.Creative people are willing to take risks, share ideas, step outside boundaries, that describes
many nurses I know.
Creative people...
• “are intuitive, self-confident, and able to tolerate ambiguity.” (Simon, 1999)
• have a willingness to take a risk and share their ideas.
• go beyond the boundaries.
• Are willing to break with convention.
• are flexible.
• are open minded, possess a positive attitude.
• able to let go.
• have self-esteem.
Which of these characteristics describe you? We can unleash our creativity, and share it with each other. I believe this will
strengthen us as a profession and help us to help ourselves in the ever-changing health care environment.
How do you unleash the creativity you have inside you? What does it take to be creative?
I believe we can start by giving each other permission.We stifle each other at times, often unintentionally, discouraging or
just by not encouraging each other to questions the rules and consider tipping the sacred cow.
Ask each other for help! Don’t be afraid to do this and do it often. If you are a new nurse, find a mentor. If you are an
experienced nurse, who do you share your ideas with? It can take support and encouragement to be creative. I believe we
should get that from each other.
Creative strategies in nursing
Now as I share some examples of risk taking and creativity think about your own nursing practice. Let’s start by looking at
some examples of risk taking.
Trying a new path
Some of us really can take a risk, or that is how I see the example Deborah Hodges has set for us. Deborah has her own
business as a nurse consultant; her principle services are oncology nursing education and performance improvement. She
wanted to forge her own direction to see what would happen. She was willing to break with convention and take a risk.
This is the 4th year of Deborah’s successful entrepreneurial business. I asked Deborah for advice on being creative. She
wants to remind us that we need to trust ourselves, we are of value! We have a lot to contribute in so many ways. She
encourages trying something new, but also know what your comfort level is, what can you live with. If you need constant
change, don’t be afraid of the unknown. Set up, organize and go after what you want in a planned fashion. Deborah,
congratulations on your successes and thank you for allowing me to share your story (and your picture).
There are many of you within our PSONS family with this same creative,and entrepreneurial spirit willing to take risks. It felt
risky to me too as I left my safety zone, the community hospital I had worked in for 17 years.Three years ago I resigned my
position there and set out to do something different, to face new challenges, hoping I could stretch in new ways as an
oncology nurse. I have done just that as I’ve grown right along with NexCura,a small company of 30 employees here in
Seattle, NexCura’s mission is to provide healthcare education and information to patients, caregivers, and providers, that is
individually-tailored to a patient’s situation. We develop online interactive tools that enable patients to make better informed
decisions about treatment options. When I began this venture 3 years ago, the internet was a new arena for nurses like myself.
There have been few role models for me in my current work environment, but my own clinical knowledge and experience
have served me well in this oh, so foreign business environment.
I am very proud of the work I’ve done to support NexCura’s mission.We have reached over 200,000 cancer patients. I am
happy in my current position,but yes, I sometimes do still miss the direct interaction with patients and you my nursing
colleagues, but I know from the comments we receive from those who use the Profiler, our decision support tool, that I still
am able to make a difference in patients lives, just in a different way.
Risk taking isn’t always trying something necessarily new. It can mean just acting on what we can do with the knowledge
and resources we have and not waiting for a better or the best solution.
Humor
Humor is definitely a creative strategy. Who amongst your colleagues makes you laugh or knows how to make their patients
laugh? I know of several but I have a couple of stories I’ll tell you now and I expect that your own examples are just as
amusing. As health care and the world around us changes it sometimes seems it would be easier to resist change and continue
on with the way it has always worked. No doubt all of us have been through many cycles of change in our profession and
personal life.The pace with which we are confronted with new information can be so overwhelming.But we are nurses,we
cope,for the most part. Well, once upon a time there was a physician who thought he could resist change and pull us back
from the evil direction we were headed! As the electronic medical record moved forward this particular physician resisted by
complaining to no avail. This physician was very unhappy about looking for current patient data in the computer. One day he
decided he’d had enough, so he wrote a physician order, and his order declared that all nursing documentation for his patient
was to be done on the “ blue bordered”progress notes page. So, how was the nursing staff going to respond to that order? Kay
decided the only solution was a humorous one, prior to the physicians next visit to the nursing unit,she proceeded to outline
one of the computers with blue tape. Voila, the documentation was now within the blue border!
Meeting pt needs outside the “lines”
How many of you colored outside the lines when you were young? Now do you?
Let me share some examples from you of oncology nurses who looked beyond the rules and colored outside of the lines!
Leslie and the Wife
Recently a nurse described for me a memorable patient and wife she cared for in the hospital.This cancer patient had an
ileostomy and now a profusely draining fistula that also needed to be bagged.The wife was the patient’s caregiver at home
and was at the bedside when Leslie was first changing the patient’s ileostomy bag and managing fistula care. Leslie noted
that the patient’s skin was in near-perfect condition. She commented on this to the patient’s wife and began to discuss with
her how she had done his ileostomy care. The wife jumped forward to assist Leslie explaining her rule that every last minutia
of adhesive must be off the skin before applying the new appliance;as she talked she began,ungloved,to demonstrate how she
accomplished this with her fingernails! As nurse and wife talked and provided the patient care together, they
learned from each other.
Leslie was able to assess the wife’s abilities and technique as well as teach about asepsis, and learn from her what worked
best for his skin and ostomy care, which was different from what Leslie had planned. She also learned that the wife really
wanted to do this care herself,to be allowed to participate in her husband’s care, his healing. This was incorporated into the
care plan, and the patient, wife, and nursing staff all benefited from Leslie’s willingness to involve the patient’s spouse. I
don’t think this is a unique occurrence in care of cancer patients but it points out again how important it is to listen carefully
and be open to trying things a little different. Leslie cheerfully and pridefully described this creativity as “containment of
secretions that provided comfort and healing”!
Sue and the Mother’s Day Party
Sue describes a family anxious to celebrate a last Mother’s day for their mother dying of cancer. They wanted for their
matriarch a special day, but she was unable to leave the hospital. A hospital room though, is not a great party room for a
family, so the nursing staff arranged for a room normally reserved for hospital meetings to be made available for the Sunday
gathering.The room was decorated and the day was very special for this patient and her family. How different the memory of
that Mother’s Day might have been if the staff had not challenged the “meeting room rules”. They heard that families need
and responded.
Kay and the Cat
Kay cared for a cancer patient in the hospital whose cat clearly missed it’s owner and would not eat. Discharge date was not
near, and Kay’s patient suffered over the thought of her cat’s refusal to eat because she was not there. Kay encouraged the
patient’s friend to bring the cat to the hospital. Cat and patient were united for a short but much-needed visit in the patient’s
hospital room; the cat sat purring on the patient’s chest; the patient napped too, almost purring herself. Thecat was taken
home and promptly ate a good dinner to her human friend’s relief. Kay stretched the rules, caused no harm, and supported
this patient’s healing.
Liz and the Priest
Liz’s example is another that shows how looking beyond the obvious physical needs of a patient and acting on our caring
instincts can make all the difference. Liz was the visiting nurse for a man I’ll call Jim, dying of lung cancer. He lived alone in
a small cluttered apartment and that’s where he wanted to die.Despite his goal to die at home alone, he eventually did ask his
son to return from out of the country to be with him.As Jim got closer to death, as expected,he became weaker, dehydrated,
barely able to talk; but generally physically comfortable.The end could not be far, yet Jim’s condition had changed little in
several days. For some reason he hung onto life. Liz searched for what else she could do to help him. She recalled that he had
been raised in the Catholic faith,although he had not been a practicing Catholic for many,many years. Something told Liz he
needed to see a priest. She located a priest in Jim’s neighborhood who agreed to see him later that day. Liz had seen the
patient earlier that day and found him unable to talk to her, and she wondered if the priest visit would be of any help to Jim.
The priest arrived and administered last rites. The priest and Jim talked at length, the visit a clear benefit to the patient. He
died soon after the priest’s visit.
I am guessing you are thinking of your own examples of how you colored outside of the lines to meet the needs of your
patients. Have you shared those stories with others?
Sharing our creativity in nursing education in big ways
So let’s talk now about nursing education and creativity.Time to think outside the box! Creativity in nursing education can
happen in big ways or little ways. Let me share what I call a big example first. Vicki Whipple’s leadership stirred the
collective creativity of our oncology nursing community that initiated the work of what became the Puget Sound Oncology
Nursing Education Consortium and the successful development of a 4 day course, “Fundamentals of Oncology”. I
distinctly remember the phone call I received from Vicki in the fall of 1998 describing her ideas to get a group of Puget
Sound oncology clinical nurse specialist’s and nurse educators together to brainstorm if and how we might share the
challenge of the ongoing need to provide oncology education to nurses..The community responded yes let’s do it; the work
was begun. Boundaries were crossed and resources shared within a competitive health care market.The curriculum
for the 4 day educational program was developed and the first successful course was offered in the fall of 1999.
Vicki provided the leadership for this group for over 2 years as the cooperative group grew.Currently the consortium has
completed 8 classes with an average of 100 attendees per class. The number of institutions has expanded to 22. I hope you
have had an opportunity to benefit from the ongoing collective creativity of this group that continues on,now chaired
by Martha Purrier.
What have you individually or with others within your work environment done that you could share beyond your immediate
institution walls? How might you do that? Perhaps an article in the newsletter, or other publication? A presentation at PSONS
education meeting? Again, I encourage you to share your creativity.
Creativity in nursing education in small ways
This symposium is another example of an annual meeting that we reserve for learning and reconnecting with our peers.
These examples are the exception or should be to the frequent learning that is required as new oncology information and
health related information surfaces daily. More often than long seminars or conferences,we attend shorter presentations,
maybe an hour or 50 minute lecture. Sometimes though this lecture format just doesn’t do the trick.The content you need to
convey just doesn’t fit that format. Or maybe the lecture format will work but lack of time to plan or attend prevents using the
classroom format.
Time to get creative! This next example comes from my own experience again. Many moons ago, in the early 1990’s when I
was an OCNS at NWH, the nursing management team was making plans to do some hospital wide nursing education to raise
awareness of our nursing standards. JCAHO requires that nursing competency be maintained through a combination of
competence assessment and educational activities, but enticing nursing staff to participate in review of material that is viewed
as less than exciting can be a challenge. To meet this challenge we developed a poster explaining our standards model; this
poster, with examples, was placed on each nursing unit for “Standards Awareness Month”. During one week of that month
we distributed 1200 fortune cookies containing 30 different questions. The question were designed to encourage the nurses to
use the standards manual to find the answers. To motivate the nurse beyond his or her own desire to learn about our
wonderful standards program, we had a contest. If you answered the question on your fortune cookies correctly on the contest
entry blank you were eligible to win a prize. We successfully repeated this fun fortune cookie contest to promote standards
awareness 3 successive years. Knowledge can be gained while still having fun! Other fun approaches to learning can include
a nursing skills fair, where review of psychomotor skills through demonstration, practice,and mock scenerios, allows
multisensory learning; there is nothing like getting your hands on those tubes, pumps, ostomy equipment, and
code equipment.The Jeopardy game was a favorite of a rehab clinical nurse specialist I worked with.Games and activities
allow us to learn experientially- we learn from what we do rather than what we are told.
Making time for reflection
When do these good ideas come to us? On our way home from work,as we drive home, or in my case on good weather days
my walk or bike home. Maybe for you it is in the shower. Getting ideas in the shower or while you are driving has almost
become a cliché, but it is true. It is a time when you are free to think. I can think of many a staff nurse I know who when they
sat down to chart at the end of a very busy shift, suddenly had time to “think” and had all kinds thoughts, and questions about
their patients, “Freed from the busyness of the day, creative energy emerges.“ (Kalischuk and Thorpe, 2002)
My own creative ideas often surfaces when I am at conferences like this one, learning new things, networking with others and
thinking about how to apply new knowledge and ideas to my own nursing practice. Do you plan reflective
time? Perhaps we all should. In this busy world we live in it is important to give yourself time to unwind and let your
subconscious mind do its work and support your creative side.
Nursing is a science and an art. Art requires creativity.I would ask you to consider some different ways of looking at
yourselves and your practice as nurses.
When we dare to be creative, we enrich our practice, profession and selves.And it makes us feel good! Dare to depart from
the ordinary!
Summary
I would like to close by sharing with you some small bits of advice. You will find this in the fortune cookies that are on your
table, in the little white boxes, but before you leave, you have to share with me.I would like you to write down something that
you think is important to share with your oncology nursing colleagues, whether it is a nursing tip you have found especially
successful or your own brand of creativity that others would benefit from. As you take a cookie, please give back advice,
wisdom, a nursing tip that you would like to share.
As I said when I started, I don’t consider myself especially creative, I view myself as a practical person who is not afraid to
try a new idea and apply it to old problems. I have learned well the adage, nothing risked, nothing gained. And I believe what
we gain is worth sharing with each other. I believe nursing will only grow through our collective efforts; as individuals we
can contribute to that by sharing our successes with each other. Whether you agree that the stories I’ve shared here today are
examples of creativity or just what we do, I hope that I have given you a chance to reflect on your nursing practice, and think
about what you can share with other oncology nurses.
Many thanks to all of you who have inspired me and keep me impassioned about oncology nursing. I tend to be one whose
cup is always at least half full and my wish is that someday we won’t need oncology nurses to care for patients with
cancer, but instead our jobs will focus mainly on prevention.At that point, if I’m not to old,I plan to switch my specialty to
occupational health on the nearest space station.
2002
NOTE: THIS INCLUDES A COUPLE OF SIDEBARS
Mentorship: Mazes and Miracles
Patricia C. Buchsel
RN, MSN, FAAN
The health care environment of today is plagued with numerous catastrophic concerns surrounding compromised patient care.
One of the greatest challenges facing the clinical care of patients is the current nursing shortage, unlike any other crisis in
professional nursing history. The causes are well known, the solutions woefully dismissal. Hohengarten (2002) and Goetsch
(2002), in separate articles, have recently presented an outstanding review of the nursing shortage.
Many national and regional solutions have been suggested such as federal government intervention with the Nurse
Reinvestment Act and the Health Resources and Services Administration’ s Nursing Education Loan Repayment Program
(Moore, 2002). The Oncology Nursing Society, the American Nurses Association and Sigma Theta Tau are launching
programs in cooperative efforts to enhance the nursing profession. Equally important is the community response to the
absence of qualified nurses. For example, Johnson and Johnson announced its multi-year campaign that includes national
advertising to attract more people to nursing in hospitals and extended care facilities, where an acute shortage, expected to
triple in coming years, raises health concerns for the vast majority of Americans. The campaign, which is estimated to exceed
$20 million over the next two years,was developed with national nursing organizations (J & J Press Release, 2002).
On the local level the Puget Sound Oncology Nursing Society chapter leaders have initiated mentorship programs such as
that of the relationship of ONS mentors with Seattle Pacific University nursing students. The North Valley California ONS
chapter is recruiting high school students into the nursing profession by giving guest lectures on the benefits of the nursing
profession (ONS News, 2002).
Along with recruitment problems, retention issues are common and pathetically overlooked. To further exacerbate the
problem, the disappearing mother lode of experienced professional nurses raises the question of “ who will mentor?” those
who have chosen nursing as a profession. This query is so astounding that nursing programs nationwide are offering
advanced education mentoring programs to develop and enhance leadership skills in new and emerging administrators in
baccalaureate and graduate nursing programs (http://aacn.nche.edu 2002).
Historically, nursing has mentored is own. One now wonders if this rich resource is diminishing with the demise of the
professional nurse. Mentorship of our fledging nurses continues to be our responsibility and it is imperative that those of us
who are seasoned do not lose sight of this concept in our turbulent times. Mentorship is not limited to only new graduates but
to the continued growth and development of advanced nurse practitioners to reach professional excellence.
The Concept of Mentoring
The language of mentoring originates from ancient Greece mythology. Mentor was the name of the protector and teacher of
Odysseus’ s son Telemachus. Thus the term mentor has been handed down to become a noun: a wise and trusted teacher and
counselor, or a verb: (a). to serve as a trusted counselor or teacher especially in occupational settings and (b) a process by
which persons of rank, achievement and prestige, instruct counsel, guide, and facilitate the development of those identified as
proté gé s.
The concept of mentoring or coaching in nursing has a long history. It has its origins in the early Christian era when the rich
and powerful trained members of the clergy to care for the sick and poor. Throughout the middle ages, religious orders such
as the Sisters of Mercy and Sisters of Charity cared for the sick and were mostly trained by physicians. In 1860 Nightingale
opened the first modern training school for nurses at St. Thomas Hospital in London (Donahue, 1996). In the 1900s, most
nursing schools were modeling skills acquisition as outlined in Patricia Benner’ s seminal book, From novice to expert
(1984). Benner applied a model of skill acquisition developed by professors Hubert L. Dreyfus and Stuart E. Dreyfus. Benner
she offers a lucid, colorful description of nursing practice as rendered by expert nurses. She guides mentors, as experienced
individuals, to take an active role in the professional and personal development of less experienced persons. Since 1984, the
nursing profession has radically shifted to an environment of few mentors, resulting from unfilled positions left by retiring
professors of nursing. Over fifty-two percent of deans of baccalaureate nursing programs are over the age of fiftyfive and
only 5% of deans are under age 45. The average age of a registered nurse is 45 years and less than 10% of nurses are under
the age of 30 (ONS News, 2002). Exacerbating the present dearth of expert professional nurses is the overworked and
underpaid nursing staff that has little or no time to teach and mentor fledging nurses. In 2002, the mentoring and teaching of
nurses is every nurse’s responsibility be it preceptorship or mentorship. This is our legacy to give to the millions of patients
who near our care.
Mentorship is distinct from preceptorship. The mentorship process begins with an invitation from the mentor to the novice
who subsequently provides counseling on successfully moving through a nursing career. The classic mentor-protégé
relationship is intense, conscious, and exclusive. Most often, this relationship is stimulated by personal chemistry that attracts
each person. Each role must compliment the other.The mentor also has a responsibility to protect the novice from hazardous
choices along the road to success (Joel, 1997). Similarly, proté gé s have obligations to their mentors that are rooted in
respect and courtesy.
Mentorship is a mutual relationship with numerous benefits to the mentor as well as the mentee. The benefits lie in the
quality of the relationship. Participating in the growth and development of the protégé rewards mentors. Witness the joy in
the face of a novice author as she or he reads their name in a national journal.
Listen as you hear them already planning to share their expertise by writing yet another article. Mentors are also motivated to
keep current and benefit from feedback from the proté gé . Think how often those of us who did not have the benefit of
learning immunology in school are challenged now to learn complex biological concepts from our novice colleagues. Proté
gé s learn from assisting their mentors with their work by collecting data for a research study, performing literature searches,
and participating in proofing article for publication.
Another life enriching experience for the mentors is usually the development of a positive, long-term relationship even as the
proté gé achieves career excellence. Finally, the mentor knows that the proté gé will, in turn, offer similar support to others
in the future thus enriching the future of nursing.
Often metaphors are powerful descriptors of human behavior and situations. In the perfect world, perhaps only perfect
mentors exist. One authority on mentorship uses the metaphor of a gardener (mentor) and a plant (proté gé )
(http://www.ispub.com/journals/IJANMP/Vol2N@/mentoring html).
In reality, not all mentoring relationships are fruitful, and some can be described as toxic. Some errors in mentoring have
been described using the metaphors of the sculptor, the show-biz mom, and the master-slave apprentice. The sculptor
approach has its roots in older models of childrearing in which the parent was responsible for molding the child.
Unfortunately, this concept still exists in some mentoring situations. For example, the mentor sees himself or herself as the
ultimate model whose goal it is to shape the novice into a duplicate of them. The show-biz mom mentor is also a parenting
model in that the mother is superior, the child dependent and helpless and submissive to the parent. This type of mentoring
usually fails as the child becomes less dependent on the mother and finds its own wings. The master-slave relationship is
another abusive relationship in which the superior controls the experience of the protégé . An example is the faculty-student
relationship whereby the faculty uses the student as free labor. Rather than sharing authorship with the student, the faculty
will use the student’s work as their own.
Mentoring in 2002
Perhaps the catastrophic health care events suggest that mentorship of expert oncology nurses is a lost art and science.
Rather than succumb to this notion, today’ s mentor may need to operate in slightly different models than those of the past.
However, content must remain unchanged. Strategies will continue to include retaining the spirit of professionalism with its
characteristic values, attitudes and esprit de corp. For example, both the American Journal of Nursing and the Oncology
Nursing Press offer mentorship programs for novice writers. In these programs, aspiring authors are connected with seasoned
authors who guide the novice through the writing process. Another example might be the selection of a student or a new
graduate for the deliberate purpose of facilitating her or his development and transition into the profession. Should you
choose the path of mentoring, your reward is an opportunity to leave a legacy and smooth your own rough edges as your
protégé matures into full bloom.
_
References
American Association of Colleges of
Nursing, (2002). Leadership for academic
nursing program.
http://aacn.nche.edu/Education/fuldmentor.
htm. Accessed February 19,
2002.
Bruns, P. K. (2002). Professional guidance
with nursing organizations provides
needed leadership. Puget Sound
Quarterly, 25 (1) 1-3.
Benner, P. (1984). From novice to
expert: Excellence and power in clinical
nursing practice. Addison-Wesley
Publishing Company, Nursing Division,
Menlo Park, California.
Donahue, P. (1996). Nursing, the Finest
Art, 2nd edition . St. Louis. Mosby
Goetsch, C. M. (2002). Mentoring
nurse leadership:A service learning
partnership between PSONS and
Seattle Pacific University. Puget Sound
Quarterly, 25 (1) 4.
Hohengarten, L. (2002). Summary
results of table talk:A group process on
the nursing shortage. Puget Sound
Quarterly, 25 (1) 5.
Joel, L. (1997). Charged to mentor.
American Journal of Nursing, 97(2), 7.
Moore, P. (2002). Now is the time to
join ONS in addressing the nursing
shortage. ONS News, 17 (5):14.
2001
Patient-Centered Pain Management: Novel Computer
Technologies Amplify the Patient’s Voice
Diana J. Wilkie, PhD, RN, FAAN
For a long time, in fact my entire 24-year nursing career, I’ve been hearing voices. No, not those kind of
voices. The voices of health professionals debating pain management goals and above all, the voices of
patients crying for pain relief.The roar of the voices was deafening and compelled me to conduct pain
research focused on amplifying patients’ voices so they could be heard and on supporting health
professionals to implement effective pain management strategies. In this lecture honoring Ruth
McCorkle, I share findings from several of the many studies we have conducted during the past 12 years.
These findings led us to create innovative uses for computer technologies to amplify patients’ voices and
to support clinicians’ pain management decisions.
Research Framework
My integrated model of pain for my research (Figure 1),shows pain as a multidimensional phenomenon.
Specifically, the neural mechanisms of pain interact within the person influencing the affective,
behavioral, cognitive and sensory aspects of pain which in turn can affect pain transduction,
transmission and perception. At the core is suffering, which can be nonexistent or engulf the entire
person. Through investigation of various elements of this model, I’ve been able to clarify and amplify
the patient’s voice.
Behavioral Dimension
A decade ago, we studied the behavioral correlates of lung cancer pain, focusing on the sensory,
behavioral, cognitive and affective dimensions of pain. Early in my clinical practice, I observed that
often patients’ voices were not heard if their behaviors did not indicate the person was experiencing pain.
In this study I videotaped patients in their homes with one camera focused on their bodies and another
camera focused on their faces. We scored the videotapes, stopping every 20 seconds to see what
behaviors were displayed by the 45 patients who had lung cancer. We found 42 different pain behaviors
that patients used intending to control their pain, either to reduce it or to prevent its onset. From the
patients’ perspective, these pain behaviors were not used to let other people know they hurt or to get
secondary gain. Following are a few examples of some of the pain control behaviors:
guarded the arm on the same side as their tumor by internally rotating and abducting
the arm, holding it in a stiff and a rigid position as they walked; they did not have a normal gait
swing. Unfortunately, this same behavior caused the patient to have myofascial discomfort
from the stiffness this guarding produced in the neck and shoulder region. Then they rotated
the affected shoulders and stretched their backs to overcome the new pain caused by a
behavior they had intended for pain control.
-
braced when shifting from static positions (sit, recline, stand).
put their thumbs in their pockets or in their waist belt loops to take the weight off of
their shoulders if patients had hypertrophic pulmonary osteoarthropathy (HPOA) in their
shoulders. HPOA is a paraneoplastic syndrome in lung cancer. Patients with HPOA in their knees
shifted their weight from one leg to the other, sometimes as often as every 20 seconds.
put their hands to their thighs as they shifted from one position to another and in doing
so they stabilized their low back when they had vertebral body metastasises.
crossed their arms to stabilize thoracic spine lesions by holding their arms crossed over
their chest.
-
positioned body parts or reclined in special positions.
-
applied pressure to particular body areas.
self-manipulated by rubbing, squeezing, and touching the hand and arm that was
affected by brachioplexopathy.
-
massaged other painful areas.
had very few of the facial expressions associated with pain (grimaces) but lower eye-lid
movement (squint) was common.
In this study we gave voice to the meaning or intent of patients’ pain behavior. Patients were clear that
their behaviors were attempts to control or reduce their pain, not to communicate their pain to others.
Overall we found that many of these behaviors can be beneficial but some of them might be harmful.
We still need to identify all the harmful and beneficial behaviors related to pain. Then we need to teach
patients not to use the harmful behaviors but to use the beneficial behaviors.
Additional information about these behaviors and other results of the study are published (Wilkie et al
1992; Wilkie & Keefe,
1991).
N u r s e s ’ Inferences of Pain Behavior. In another study, we selected nine of the patients on the
previous videotapes and showed them to about 160 nurses, about 28 to 50 nurses per patient. The nurses
were asked to make judgments about the location and intensity of the patient’s pain and to indicate the
behaviors that helped them make those judgments. As Figure 2a shows, the nurses tended to
underestimate how many places the patients hurt, but for patient #30, the nurses indicated the patient had
more pain sites than the patient reported. As Figure 2b shows, the nurses overestimated the intensity of
pain compared to the patients’ ratings, except for patient #29 who rated his pain as 93 and the nurses
rated his pain as 29 on average. Figure 2c shows that nurses underestimated or overestimated the
number of behaviors related to pain as were reported by the patient and that few of the same behaviors
were noted by both the nurses and the patients. Patient #30, an 80 year old gentleman, used 13 different
behaviors to control his pain but the nurses didn’t recognized many of those behaviors as an indicator of
pain. Patient 29, an African American man with excruciating pain, engaged in many pain control
behaviors that nurses often attributed to a pain free state. This African American gentleman only had
cough syrup prescribed to control his severe lung cancer pain. The results of this study show how
important it is that we amplify patients’ voices to help them be heard and get pain relief.
Telling Others about Pain. In several studies,we also found that about half of the patients say that they
try not to let others know when they hurt. The other patients say that when they hurt, they just tell other
people. For those patients who say they tell others, it is not clear if they tell efficiently. We have not
studied the efficiency of telling, but we have studied ways to help patients communicate their pain to
other people, especially their oncology clinicians.
Coaching Patients. Because so many people tended not to tell others about their pain, we started
coaching patients to tell others about their pain in 1990. Dr. Donna Berry joined our group in 1994 and
together we worked with 9 different cancer clinics here in the Puget Sound area to recruit patients with
lung cancer. We coached them how to monitor their pain and then to tell their doctors and nurses about
their pain. We hopeD to make patients’ voices heard and that clinicians would then prescribe analgesics
to relieve patients’ pain. We completed the five-year study with 154 lung cancer patients. Figure 3
shows that we studied an elderly sample. We randomly assigned the patients to an experimental group
that we coached and a control group that received usual cancer care. The people we coached saw a 12
minute videotape teaching them why and how to tell their doctors and nurses about the pain. We also
showed them how to self monitor their pain using a grease pencil to mark their pain on laminated
McGill Pain Questionnaire pages. If the pain changed, they could rub off the mark and make a new one.
We also gave them weekly coaching reinforcements, either in person or on the telephone weekly for the
next 3 weeks. The focus of the coaching reinforcements was tailored to the pain information the patient
told the clinician, which we obtained by listening to an audiotape of the interaction between the patient
and the clinician at the previous clinic visit. Based on what they told the provider, we acknowledged and
praised them for the information they had shared and encouraged them to share any missing information
so that their doctor or nurse would know about the pattern, area, intensity and nature of the pain that
they had reported using a McGill Pain Questionnaire. We also role modeled to those people who hadn’t
told their doctor or nurse— how to do so at the next clinic visit. We continued to audiotape clinic visits,
measure their pain and record the analgesic prescriptions given to these patients.
As Figure 4a shows, with the combined efforts of the patients telling and the clinicians’ assessing pain,
at baseline about 70% to 90% of the patients told their doctor or nurse about the location, intensity,
quality and pattern of their pain. This finding was good news from a clinical perspective and bad news
for a study, because there were high rates of telling when both the patient and the clinician know they’re
being tape recorded for a pain study. There were no differences between our groups at baseline, and
that’s good news from a research perspective.
At the end of four weeks, the notcoached group tended to decrease telling about all four pain parameters
(Figure 4b).We found a statistically significant difference between the groups in telling about pain
intensity and quality; the coached group tended to increase their telling. Clinicians need to know about
pain intensity in order to titrate pain medications. Pain quality is important to help clinicians know
whether or not the pain is neuropathic (nerve damage), which requires different analgesic agents than
pain related to tissue damage (nociceptive pain).
We were pleased to see these increases after our coaching. We were discouraged, though, that coaching
did not improve telling about pain pattern or pain location over the four-week study. Overall, however,
the number of pain parameters (0-4) that were communicated during the clinic visit was significantly
improved in the coached group (Figure 4c).
Even though we increased the telling about pain intensity, we didn’t see any difference in either the
visual analog scale of pain intensity or pain relief (Figure 4d). Again, this finding is good news for
clinical practice but bad news for our research. I think it was really exciting to find that the average pain
intensity for this group of lung cancer patients was 19, which is really low in comparison to other studies.
This finding indicates that Puget Sound area clinicians are controlling pain better now than they did 15
years ago (Greenwald, Bonica & Bergner, 1987). Unfortunately coaching did not reduce the pain
intensity further, perhaps because there was no change in the prescribed pain medications.
Patient-Provider Communication about Pain. Dr. Berry analyzed some of the audiotapes, and found that
often when patients tried to talk about their pain or other symptoms, the provider interrupted. This
finding would help us to understand why the pain medications were not changed. As we look at these
data, we found that coaching improved the sensory pain data reported, but it was very time intensive. It
didn’t give an adequate return on the amount of time we invested with these patients. We knew from the
audiotapes, the providers cared about their patients, so it was a puzzle - Why would they interrupt the
patient? Our hypothesis was that the patient mentioned pain at the end of the visit, when the provider
needed to see the next patient. Those of us who do pain work know the end of the visit is the wrong time
to talk about pain, because once a patient starts talking about pain, it can take 15 to 20 minutes to
complete a pain assessment using an interview format. It is possible that these skilled oncology
providers knew they didn’t have that much time. So the easiest thing to do was to interrupt.
We found the patient’s voice was being muffled by interruptions, even for those patients who were
coached to tell others about their pain. One patient said,“You know, I had to go and grab the doctor’s
arm and say, Doctor, let me tell
you about my pain!” This example shows the extent to which this patient tried to communicate. We
don’t think many patients are going to be that persistent, to insist upon reporting their pain. Based on
these observations, we knew that we needed to think of another way to communicate pain information to
clinicians. We thought of using computer technology to collect the sensory pain data and then to
summarize it for the clinician as an extension of the coaching intervention. C o m p u t e r i z e d
PAINReportIt.To that end,we developed the first, computerized McGill Pain Questionnaire and tested it
in several studies here in the Puget Sound area. We wanted to find out how long it took patients to
complete the questionnaire, because we know how important time is in clinical care today. We can let
the computer calculate the time. We also used an acceptability scale with 13 items, for patients to tell us
their opinion about completing the computer pain assessment tool. We also wanted to know, if they
completed all the parts of the questionnaire or if they would leave questions blank.
When we started these studies, we recruited people from the general public to test our program because
we could not bear to let sick cancer patients test a program that might crash as they tried to use it. We
put two computers in our Comfort Coach, a 27 foot mobile home used to conduct behavioral observation
research. We parked in the parking lots of Fred Meyer’s, Sam’s Club, senior centers, or other high foottraffic areas to recruit people who had chronic pain without cancer. We also recruited patients at a
privately owned radiation oncology clinic in Tacoma, and at the University of Washington in oncology
inpatient units. We asked these people and patients to use our program (Figure 5). PAINReportIt runs on
Windows 95 or 98 and patients used a 19” touch screen monitor, like banking at the ATM. They
completed the McGill Pain Questionnaire, demographic questions and computer usability
questions.These data are automatically stored in an Access7 database as soon as the patient pushes the
button to go to the next page, so there’s no data entry for the researchers.The patient is able to draw on
the body outline by touching the location of the pain.They then indicate the intensity of their pain by
touching numbers, pick from 78 words to show the quality of their pain and from nine words to show the
pattern of their pain.
Once they give us the information, we’re able to generate a one-page summary report for patients and a
two-page PAINConsultNt for clinicians based on the patient’s data. For example, the PAINConsultNt
gives recommendations for analgesics based upon the patient’s age and weight and the pain intensity
level and pain quality derived from the verbal descriptors. If the patient describes neuropathic pain,
PAINConsultNt gives suggestions including use of amitryptiline or Doxipen or Gabapentin for pain
control. Based upon the information that the patient shares, PAINConsultNt also shows the data from
the patient’s pain location, summarizes all the intensity data and categorizes the verbal descriptors as
indicative
of nociceptive pain,neuropathic pain, e m o t i o n a l response, the patient’s coping response, and the
temporal pattern of the pain. PAINConsultNt also includes i n fo r m a t i o n about things that aggravate
the pain and things that alleviate it. If the patient gives data about pain medications, PAINConsultNt
includes equal analgesic doses of other opioid drugs and lists drugs the patient reported that worked or
didn’t work for his or her pain. With the one-page pain summary or the two-page PAINConsultNt we
give voice to the patient’s pain, because the patient has given the computer the information. In less than
two minutes, this information is made available to the provider by the computer, giving voice to the
patient’s pain.
Patients in our initial studies of PAINReportIt were aged 50 to 65 years on average,many of them with
no computer experience (Figure 6). We found the following:
In the outpatient sample, all of the sections were completed by every patient and at
least one pain site was validated with evidence of disease for all of the patients. These patients
had bone metastasises so a bone scan showed indication of tumor in the area where the
patients had reported their pain. Overall, 87 percent of the sites were validated usually by bone
or CT scans.
The hospitalized patients completed all sections of the computer questionnaire. One
patient who was vomiting profusely insisted on completing it.
When we first created this computer program and tested it in the general public, three
subjects did not complete one section of the McGill Pain Questionnaire, perhaps because they
were pushing the “next” button too quickly. We fixed the problem.
-
How long did they take to complete PAINReportIt?
-
hospitalized patients, really sick people, took on average 17.3+7 minutes.
-
outpatients from radiation oncology took 11.4+5 minutes.
-
general public sample took 14.5+6.1 minutes.
These results are important since the paper and pencil tool takes 10 to 15 minutes, but
the data must be summarized, interpreted and entered in the computer for research or quality
assurance purposes.There was no difference in the amount of time that it took people with
computer experience and those who had never touched a computer, to complete this program.
We were very excited about the acceptability numbers. On a scale of 0- 13, where 13 is maximal
acceptability, the average scores were be-tween 11.1 + 1.7 and 11.8 + 1.4. Patients found
PainReportIt©© a very acceptable way to report their pain.
In conclusion, we demonstrated the feasibility of this idea, identified some program changes that we
already made, and clarified ideas we are pursuing in current studies. PainReportIt© is an innovative
method of amplifying the patient’s voice related to the pain. If health care centers seek more time
efficient, patient centered ways to monitor the health status, this method might be a very effective way
of doing so. We believe this technology is an alternative way to elicit the essential information that
patients need to share with clinicians about their pain in order to improve the efficiency for doctors and
the nurses. We want the computerized tools to augment clinical practice rather than replace providers.
We want to let the patient tell the computer the simple questions about the pain and leave it to the health
professional, who has expert skill and knowledge, to do the more complex assessments. We found in our
focus group work that patients are definite, they do not want the computer replacing their doctor or nurse.
They were concerned that because of managed care,we were developing PainReportIt© to take the
doctor or nurse out of the pain assessment loop. We don’t want to do so, but we want to improve the
efficiency in health care so that doctors and nurses can deal with those issues that are very,very difficult
to program a computer to do.
Currently we are conducting a couple of studies in the Puget Sound area and getting ready to start
another study in Arizona. Look for results of these studies in the literature or at future PSONS meetings
where we will share additional information about amplifying the patient’s voice in pain and symptom
management using computer technology.Additionally, look for an innovative teaching tool that we are
developing at the UW School of Nursing using some of the research data that we’ve collected over the
past decade. This program, developed with funding from the Robert Wood Johnson Foundation, is
called TNEEL (Toolkit for Nursing Excellence at the End of Life Transition). We will provide a CDROM free of charge to every school of nursing in the country and to about 1000 clinical agencies.
TNEEL will be an innovative teaching/learning tool for nurse educators, both in schools of nursing, and
nurse educators in clinical agencies to use multimedia teaching tools to improve care to dying patients
and their families. Agencies interested in obtaining a free CD-ROM should contact me at
diwilkie@u.washington.edu. The CDROM will be available in September and we will teach people how
to use it at a hands-on workshop held at the Space Needle on August 2, 2001. Contact the UW CNE
department and ask about “Weaving End-of-Life Care into Nursing Education” if you or a colleague is
interested in attending this inaugural workshop.
With our development of TNEEL we have come full circle. We are using what we learned in the very
first study about pain behaviors to be able to teach about pain control behaviors in clinical care. These
video clips help us to be able to recognize that when we give voice to patients in a patient centered way,
we interpret their behaviors cautiously based upon their intent. We can give voice to their sensory
aspects of their pain by using standardized instruments as much as possible. As we move forward with
the computer technologies available to us,we’ll be able to use standardized instruments in a much more
efficient way. We believe these innovations can be integrated into our clinical care. We hope that our
research will help you integrate evidenced-based practice into the cancer care. In doing so you will
amplify the patient’s voice in the management of pain and other symptoms. Then the voices I hear will
be silenced!
References
Berry, D.L., Wilkie, D.J., Huang, H.Y., &
Blumenstein, B.A. (1999). Cancer pain
and common pain: Comparison of
Patient-Reported Intensities . Oncology
Nursing Forum, 721-726.
Berry, D.L., Wilkie, D.J., Thomas, C.R.,
Fortner, P. Clinicians Communicating
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