PALLIATIVE CARE:
WHAT IT IS,
WHAT IT IS NOT
&
HOW TO MAKE A DIFFERENCE
Jennifer Reynolds RN, BSN, DNP-C
March 12, 2015
Objectives
• To define Palliative Care and its components
• To differentiate Palliative Care from Hospice Care
• To explain the affects of Palliative Care on health care outcomes
• To recognize the stages, as well as the signs and symptoms, of
approaching death
• To describe the importance of spirituality in health care
• To perform a spiritual assessment
• To demonstrate therapeutic conversation skills surrounding EOL
What is Palliative Care?
• Patient and family-centered care that optimizes quality of life by
anticipating, preventing, and treating suffering.
• Palliative care throughout the continuum of illness involves
addressing physical, intellectual, emotional, social, and spiritual
needs and to facilitate patient autonomy, access to information and
choice (National Quality Forum, 2013).
Palliative Care Emphasizes…
• Management of TOTAL pain: physical, emotional, spiritual, and
social.
• Symptom management: breathing, nausea, constipation, anxiety.
• Spiritual and psychosocial counseling for patients and families.
• Support for patients making decisions about their treatment, goals
of care, and care coordination.
Palliative Care vs. Hospice
Palliative
Care
Hospice
Both focus on:
 Quality of life
 Emotional,
Physical, &
Spiritual
Support
Unlike Hospice, Palliative care allows for:
• Simultaneous treatment of underlying disease
• Acute hospitalization, including intensive care, if needed
• Palliation along side the most aggressive disease treatment
Hospice vs. Palliative Care
Hospice
• Life expectancy of 6 months or
less
• Pain mgmt. to allow patients to
die with dignity
• Many hospice programs
covered under Medicare
Palliative Care
• No life expectancy limit
• More aggressive tx of symptoms
without compromising QOL
• Each item administered is
typically covered through
hospital; ACP and other services
not yet covered
Bruera, E., & Hui, D. (2010). Integrating Supportive and Palliative Care in the Trajectory of Cancer: Establishing Goals and Models of Care.
Journal of Clinical Oncology, 28(25), 4013-4017. doi: 10.1200/jco.2010.29.5618
DID YOU KNOW THAT…
70 % of people say
they prefer to die at
home
HOWEVER…
70% die in a hospital,
nursing home, or
long-term-care facility
DID YOU KNOW…
82% of people say it’s
important to put their
wishes in writing
HOWEVER…
23% actually
do it
Public Awareness About Palliative Care
Very
Knowledgeable
5%
Knowledgeable
3%
Somewhat
Knowledgeable
14%
N=800
Don't
Know
8%
Perceptions of
patients’ wishes
aren’t accurate
Not At All
Knowledgeable
70%
Center to Advance Palliative Care, “2011 Public Opinion Research on Palliative Care,” https://www.capc.org/media/filer_public/18/ab/18ab708cf835-4380-921d-fbf729702e36/2011-public-opinion-research-on-palliative-care.pdf
Once Informed about Palliative Care…
Likelihood of Considering Palliative Care Use
After Learning Its Definition
n=800
70%
Once informed, earlier
referrals can be facilitated,
as patients recognize the
maximum benefit palliative
care services have to offer.
63%
60%
50%
40%
29%
30%
20%
10%
6%
0%
Very Likely
Somewhat Likely
Not too/Not at All Likely
The Public’s Opinion…
It is important that patients with serious illness and their families be
educated about palliative care options available to them together
with curative treatment.
78% Strongly Agree
95% either Agree or Strongly Agree
The Public’s Opinion…
Palliative care is appropriate at any age and at any stage in a
serious illness, and can be provided together with curative
treatment.
73% Strongly Agree
94% Either Agree or Strongly Agree
Benefits of Palliative Care
1.
IMPROVES QUALITY OF CARE:
• Reduces symptom burden and unwanted aggressive end of life care
• Lengthens end of life survival time
• Improves patient care experience
2.
REDUCES INPATIENT COST
• Decreases LOS
• Reduces cost-of-care
• Frees up bed capacity
3.
LOWERS TOTAL COST OF CARE
• Reduces unnecessary hospitalizations and ED visits
• Lowers readmission rates
SUPPORTIVE STUDY:
Early Palliative Care
• Study done in Boston, Mass General Hospital
• Background: Effect of introducing palliative
medicine early after diagnosis with metastatic
non-small-cell lung cancer on patient-reported
outcomes and end-of-life care among
ambulatory patients with newly diagnosed
disease
• Non-blinded, randomized controlled trial of 151 patients assigned to
early palliative care integrated with standard oncologic care or standard
oncologic care alone
• Early palliative care group met with palliative care within 3 weeks of
enrollment and at least monthly until death.
• Standard care met with palliative care only if requested by the patient,
family, or oncologist.
Temel, J. S., Greer, J. A., Muzikansky, A., Gallagher, E. R., Admane, S., Jackson, V. A., . . . Lynch, T. J. (2010). Early palliative care for
patients with metastatic non-small-cell lung cancer. New England Journal of Medicine, 363(8), 733-742. doi: 10.1056/NEJMoa1000678
Early Palliative Care Study Results
120%
100%
FACT-L Symptom Mgmt Scores
P=0.03; n= 47, n=60
Percentage of patients with s/s
of depression
P= 0.01; n=47, n=57
98%
Higher
scores
indicate
fewer
symptoms,
better QOL
92%
80%
60%
38%
40%
16%
20%
0%
Symptom Burden
Symptoms of Depression
Usual Care
Palliative Care
Early Palliative Care Study Results
Patients receiving more aggressive EOL care
P=0.05; n=56, n=49
Aggressive care=
chemotherapy within 14 days
of death, no hospice care, or
admission to hospice 3 or few
days prior to death
Palliative Care,
33%
Palliative care patients also
had resuscitation preferences
documented in their
outpatient medical record
more often than in usual care
group (53% vs. 28%)
Usual Care, 54%
Early Palliative Care Study Results
Patients’ Median Survival (Months)
p=0.02; n=56, n=49
Palliative Care
11.6
Usual Care
0
2
4
Patients who received
palliative care lived
an average of 2.7
months longer
8.9
6
8
10
12
14
SUPPORTIVE STUDY:
Outpatient Palliative Care
• Study conducted at Kaiser Permanente Colorado
and Kaiser Permanente Hawaii from 2002 and
2004
• Study included 297 homebound, late-stage COPD, CHF, or cancer
patients with a prognosis of approximately one year or less who
were randomly assigned to usual care or usual care plus an inhome palliative medicine program.
• In-Home Palliative Medicine Lowers Utilization, Increases Patient
Satisfaction
SUPPORTIVE STUDY: Outpatient Palliative
Care
• In-Home Palliative Care Services Offered:
• Patients are offered palliative care in 12 months rather than the 6 month
prognosis with Hospice Care
• Symptom management is the focus, similar to Hospice, however they do
not have to forgo curative care.
• Patients are assigned to Palliative Care Physicians who coordinates care
from a variety of providers (specialists to PCP). They received home visits
from Palliative Care physicians while maintain their regular relationship
with PCP.
• Interdisciplinary team approach utilizing a physician, nurse, and social
worker with expertise in symptom management and biopsychosocial
intervention.
• Comprehensive education and discussions focus on identifying goals of
care and the expected course of the disease and expected outcomes.
SUPPORTIVE STUDY: Outpatient Palliative
Care
• Usual Care
• Medicare guidelines for home health care criteria which also include acute
care, primary care services, and hospice care (when indicated).
• Patients were treated for their symptoms when they presented them to
their attending physicians
Study Results: Outpatient Palliative Care
Brumley, R., Enguidanos, S., Jamison, P., Seitz, R., Morgenstern, N., Saito, S., & ... Gonzalez, J. (2007). Increased satisfaction with care
and lower costs: results of a randomized trial of in-home palliative care. Journal Of The American Geriatrics Society, 55(7), 993-1000.
doi:10.1111/j.1532-5415.2007.01234.x
CONCLUSION
• In-home palliative care program, may lead to significant total
reduction in both ED utilization and hospitalizations for terminally
ill patients.
• Significant cost savings
• Total cost of care per patient was nearly $8000 lower for those in the
palliative care group.
• Moreover pts receiving outpatient palliative care were more
satisfied than usual care group.
• In addition to keeping patients out of ED and hospital, outpatient
palliative care can also transition care home and stay there
comfortably.
Quality Caring Rounds at HF Wyandotte:
Project Design
• To implement interdisciplinary “quality caring” rounds Monday
through Friday for a one month pilot on the ICU.
• To assess the impact of interdisciplinary rounds on patients’ goals of
care.
• To analyze whether palliative care triggers and advance care planning
triggers, implemented on admission to the ICU, affect the palliative
care consult rate, as well as quality of care.
• MDRs included intensivist, charge nurse, CM, SW, nutritionist,
Respiratory Therapist, Pharmacist, palliative care NP, infection control
specialist, and pastoral care (depending on the day)
Pastoral Care Consults
30
24
25
20
• In April, 2/9 were direct
referrals from rounds.
15
10
8
10
9
• In May, 16/24 (67%)
were established from
rounds
5
0
ICU referrals
Feb
March
April
• There is a strong
correlation between
spiritual care and
patient-family
satisfaction in the ICU
May
Hospital Indicators
With a 15 day
and a 26 day
outlier
PROGRAM GROWTH
• Over the past 10 years,
growth in palliative care
programs have been rapid.
• Since 2000, the number of
hospitals with inpatient
palliative care team has
increased by nearly 150%.
• Right now, 66% of all
hospitals with greater than
50 beds have palliative care
teams in place.
Source: “Growth of Palliative Care in U.S. Hospitals, 2012
Snapshot,” Center to Advance Palliative Care
Traditional Model of Palliative Care
This is when
Palliative and/or
Hospice services
are introduced
Conceptual Shift for Palliative Care--A
Continuum of Care
D
I
A
G
N
O
S
I
S
Source: Snyder S, et al., “Physician Knowledge, Attitude, and Experience with Advance Care Planning,
Palliative Care, and Hospice,” Am J Hosp Palliat Care, 30, no. 5 (2013): 419-424; Physician Executive
Council interviews and analysis
A Fundamental Shift
Usual Care
Goals of
Care
Palliative Care
Delayed until EOL
is near
Established early
in the disease
trajectory
Treatment
Strategy
Includes primarily
curative
treatments
Includes a
combination of
curative and
symptom-focused
tx
Service
Utilization
Pursues curative tx
even when lowyield, high-cost,
and burdensome
for patient
Pursues
treatments that
align with patient
goals
Signs & Symptoms
of the
Actively Dying Patient
Early Stages—
Months
• Less communicative
• Less active
• Sleep or doze more
• Eat and drink less
• Withdraw from people and activities
previously found pleasurable
• Relive memories, especially
childhood memories
One to Two Weeks Prior to Death
• Temperature fluctuations that may leave the skin cool, warm,
moist, or pale
• Increased pain
• Changes in sleep-wake patterns, constant fatigue
• Decreased intake of food and liquids
• Decline in bowel and bladder output
• Inability to heal or recover from wounds or infections
• Increased swelling (edema) of either the extremities or the entire
body
• Congested breathing
One to Two Weeks (cont’d)
• Increased restlessness, confusion, agitation, inability to stay
content in one position and insisting on changing positions
frequently (exhausting family and caregivers)
• Patient reports seeing persons who had already died
• Patient states that he or she is dying
• Patient requests family visit to settle "unfinished business" and tie
up "loose ends"
Imminent Death—Days or Hours
• Coma: If not already unconscious, patient may drift in and out of
consciousness
• There may be little or no bladder or bowel activity.
• The patient will stop eating and drinking
• Pain may be more difficult recognize at this time Grimacing,
scowls, groans. Need to be assessed frequently and managed.
• Eyes may tear or become glazed over.
Imminent death (cont’d)
• Pulse may become irregular, thready, weak (difficult to detect)
• Body temperature will drop and the skin of the lower extremities
and hands will become mottled, a bluish-purple color. Death
usually comes within 24 hours.
• “Death rattle”
• Breathing patterns will become irregular by gasping starts and
stops and will become slow until it eventually stops.
“Death Rattle”
• Noisy breathing associated with wet secretions
retained in the respiratory tract in actively dying
patients.
• Salivary secretions d/t impaired swallowing reflexes
(Type I); or
• Bronchial secretions that accumulate over days d/t
inability to cough (Type II)
• Occurs in approximately 44%-56% of dying patients in the last 24-48
hours of life.
• Standard treatment: Antimuscarinic medications (anti-cholinergics)
• Scopalimine, hyoscyamine, Robinol, and atropine.
• Increased risk of side effects: sedation, confusion, delirium, hallucinations.
• Are they really effective?? Cochrane review found no evidence that any
intervention for death rattle is superior to a placebo
Wee, B., & Hillier, R. (2008). Interventions for noisy breathing in patients near to death. Cochrane Database of
Systematic Reviews(1).
“Death Rattle” (cont.)
• Expert opinions have concluded that
the death rattle does not distress
patients
• Causes high rates of distress in
medical professionals which
inadvertently affect families
perceptions
• Staff find it difficult to not respond
when there is treatment available
• Focusing on treatment with meds
results in poor outcomes because
symptoms typically remain and if there
are delays in meds, families may
become upset.
• Organizations are looking at refocusing
education at reassuring families that
this type of breathing is harmless.
Heisler, M., Hamilton, G., Abbott, A., Chengalaram, A., Koceja, T., & Gerkin, R. (2013). Randomized Double- Blind Trial
of Sublingual Atropine vs. Placebo for the Management of Death Rattle. Journal of Pain and Symptom Management,
45(1), 14-22.
Spirituality
• Spirituality is defined as, “the aspect of humanity that refers to the
way individuals seek and express meaning and purpose and the
way they experience their connectedness to the moment, to self, to
others, to nature, and/or to the significant or sacred.”
• Spirituality and religion are not congruent although they do
overlap.
• Spirituality is about the individual and finding one’s path whereas
religion is an organized system of beliefs, rituals, or rules.
• You can be spiritual, depending on religion to find your path.
• You may be religious, identified as part of a particular religion, but
not necessarily spiritual.
Spiritual Care in Health Care
• Integral to any patient-centered health care system
• Based on honoring dignity
• Spiritual distress treated the same as any other medical problem
• Spirituality should be considered a “vital sign”
• Improved Quality
• In a survey given to patients with advanced illnesses to determine what
was important to them at EOL, being at peace with God was ranked
highest, along with pain control (Steinhauser et al., 2000)
• Spiritual support is correlated to improved quality of life as well as
decreased use of aggressive care at EOL (Balboni, Paulk, & Balboni, 2010)
Role of Spirituality in Health Care
• Manages interactions to support patient and family expression of
spiritual needs and strengths and cultural practices
• Creates environment that allows integration of dialogue about
spiritual issues within care experience
• May use questions such as:
What is the meaning of this illness to you and for your life?
What lessons would you want to share?
What strength have you called upon as you go through this illness
Do you have any spiritually specific care parameters you wish us to
observe?
• What do you worry about most?
•
•
•
•
Spiritual Assessment: FICA
• Do you consider
yourself spiritual or
religious?
• Do you have beliefs
that help you cope with
stress?
• Are you part of a
spiritual/ religious
community?
• Is this of support to
you?
• Is there a group of
people you really love or
who are important?
F: Faith,
Belief,
Meaning
I:
Importance
and
Influence
C:
Community
A: Address/
Action in
Care
• What importance does
your faith/belief have
in your life?
• Have your beliefs
influenced you in how
you handle stress?
• How should the
healthcare provider
address these issues
in your healthcare?
Source: Hospice and Palliative Nurses Association (HPNA)
Spiritual Distress
• What is Spiritual Distress?
• Spiritual distress is a disruption in one’s beliefs or value system. It affects
a person’s entire being. It shakes the basic beliefs of one’s life
• What are the Signs/Symptoms of Spiritual Distress?
•
•
•
•
•
•
•
•
•
Questioning the meaning of life
Afraid to fall asleep at night or other fears
Anger at God/higher power
Questions own belief system
Feels a sense of emptiness; loss of direction
Talks about feelings of being left by God/higher power
Seeking spiritual help
Questions the meaning of suffering
Pain and other physical symptoms can be expressions of spiritual distress
as well
Source: Hospice and Palliative Nurses Association (HPNA)
Addressing Spiritual Distress
• Symptoms to Report
• Any symptoms of spiritual distress
• Side effects of medications
• Report behaviors that are out of character for the patient at distressing
times
• Talk about suicide
• Known history of spiritual distress
• Not caring for self or life in general
• Sudden rejection or neglect of previous practices or beliefs
• CONSULT PASTORAL CARE if not already consulted
Spiritual Distress and the Practitioner’s
Role
• Encourage open discussions
• Presence and listening to the patient’s story and concerns are the
most important responses to spiritual distress
• Provide ways to honor rituals and ways of life (utilize your pastoral
care!)
• Do not say, “I know how you feel” because you don’t
Improving the Quality of Spiritual Care as a Dimension of Palliative Care: Journal of Palliative Medicine, October
2009
Formulation of a Spiritual Treatment Plan
• Spiritual care coordinator
• Documentation of spiritual support resources
• Follow up evaluations
• Discharge plans of care
• Bereavement care
Examples of Intervention of a
Spiritual Treatment Plan
• Compassionate presence
• Reflective listening/query about important life events
• Support patient sources of spiritual strength
• Open ended questions
• Inquiry about spiritual beliefs, values and practices
• Life review, listening to the patient’s story
• Targeted spiritual intervention
• Continued presence and follow up
Advance Directives/Advance Care
Planning Conversations Starters
Who do you want —
or not want — to be
involved in your care?
Who would you like
to make decisions on
your behalf if you're
not able to?
When you think about the last
phase of your life, what's
most important to you?
Are there important
milestones you'd like
to meet if possible?
(birth of your
grandchild or your
80th birthday.)
Would you prefer to be
actively involved in
decisions about your care?
Or would you rather have
your doctors do what they
think is best?
Do you have
any particular
concerns about
your health?
About the last
phase of your
life?
Are there circumstances
that you would consider
worse than death? (longterm need of a breathing
machine or feeding tube, or
not being able to recognize
your loved ones.)
Empathetic Statements
• Acknowledge the difficulty of having a critically ill loved one
• Acknowledge the difficulty of surrogate decision making
• Show empathy to the impending loss of a loved one
Curtis, J. R., & White, D. B. (2008). Practical Guidance for Evidence-Based ICU Family Conferences. Chest, 134(4), 835–843.
doi:10.1378/chest.08-0235
Identify Commonly Missed Opportunities
• Listen and respond to family members
• Acknowledge and address family emotions
• Explore and focus on patient values and treatment preferences
• Explain the principle of surrogate decision making to the family
• Affirm non-abandonment of patient and family
Curtis, J. R., & White, D. B. (2008). Practical Guidance for Evidence-Based ICU Family Conferences. Chest, 134(4), 835–843.
doi:10.1378/chest.08-0235
Where Do We Go From Here?
Everyone serves a
purpose in providing
care for patients,
however the actions
each person
performs are
different
Pastoral
Care
Palliative
Care
Team
Administrator
Patient
Ancillary
Services
Nurse
Physician