Everyone Wants To Go To
Heaven….
But Nobody Wants to Die
Jean Gordon RN, MSN, CHPN
Director of Education, QA/PI
Hospice of East Texas
Objectives


Identify evolving trends in end of life care,
with a focus on palliative care .
Differentiate between hospice and
palliative care programs.
Dr. Atul Gawande – a surgeon and staff member of
Brigham and Women’s Hospital and the Dana Farber
Cancer Institute in Boston
“Letting Go”, The New Yorker, August, 2, 2010

Our medical system is excellent at trying to
stave off death with chemotherapy, intensive
care, and surgery. But, ultimately, death comes,
and no one is good at knowing when to stop.

“In the past few decades, medical science has
created a new difficulty for mankind: how to die,

due to the seemingly unstoppable momentum of
medical treatment.”
Do you want everything done?
What the patient/family hears

Resuscitation
Ventilator
Surgery, transplants….

Cure

Return to normal life


What the physician/nurse means

We’ll try CPR, if you insist.
Evolving Realities

Life expectancy has increased

Increased prevalence of chronic disease

Increased comorbidities and frailty with
advancing age adding to complexity
 Death
is considered by many -to be “optional”
 25%
of all Medicare spending is
for 5% of patients who are in
their final year of life;
 and most of that money goes for
care in their last couple of
months….
 which is of little apparent benefit.
Atul Gawande MD, The New Yorker, August, 2, 2010
Finley, E. & Casarett, D. (2009). Making Difficult
Discussions Easier: Using Prognosis to Facilitate
Transitions to Hospice. CA Cancer J Clin
What Do Patients Want??
 Realistic prognostic information
 Straightforward communication
 Time and ability to ask questions
 Sensitivity, empathy, & “expertise”
 Assurance of non-abandonment
 Appropriate transition to palliative care
Challenges




Difficulty with patients and/or families accepting
that effective treatment is no longer available
Or… that patient has fewer than 6 months to live.
Certain people have the skills to cope well and go
gently into the night, while many never come to
terms with the fact that they are dying.
Some understand that death is imminent but
aren’t emotionally accepting of it and fight to stay
alive at any cost.
Casarett, D. & Quill, T. (2007). “I'm Not Ready for Hospice": Strategies for Timely
and Effective Hospice Discussions. Annals of Internal Medicine. 146 (6).
“What should medicine do when it
can’t save your life?”



“Modern medicine is good at staving off
death with aggressive interventions and bad at knowing when to focus,
instead,
on improving the days that terminal
patients have left.”
Atul Gawande MD, The New Yorker, August, 2, 2010

“How can we build a health-care
system that will actually help dying
patients achieve what’s most
important to them at the end of their
lives.”
Atul Gawande MD, The New Yorker, August, 2, 2010
Restoring the Balance
Palliative Care
Life Prolonging Care
Trends in End of Life Care
Greater emphasis on ‘reasonable’ care
through:
1. New legislation
2. ‘AND’ orders
3. Palliative care teams/services

The Palliative Care Information Act bill (S.
4498 Duane/ A. 7617 Gottfried), has
passed both houses of the NY State
legislature and is awaiting signature by
New York’s Governor David Paterson. If
signed, the bill “requires physicians to
discuss all end of life options.”
http://www.examiner.com/x-59793-NY-Healthy-LivingExaminer~y2010m7d30-NY-Governor-considers-law-to-promptdiscussions-about-end-of-life-decisions?cid=email-this-article

The health reform bill that passed April,
2010 included a Medicare pilot project to
allow 12 communities across the country
to offer both curative treatment and
hospice services to terminal patients to
evaluate whether physicians would refer
earlier and patients would accept hospice
earlier.
Supportive Versus Palliative Care:
What's in a Name?

Palliative Care as a term was seen as
more distressing to providers, patients,
and families than Supportive Care and
perceived as synonymous with hospice
and with giving up hope.

Treatment implies that something active
will be done and that there is still hope,
whereas care is viewed as less active and
devoid of hope.

Fadul N, Elsayem A, Palmer JL, et al. (2009). Supportive versus palliative care:
what's in a name? A survey of medical oncologists and midlevel providers at
a comprehensive cancer center. Cancer.
Supportive Versus Palliative Care:
What's in a Name?



Many use the phrase "the patient has been
taken off treatment" when chemotherapy has
been discontinued,
despite the fact that opioids are being titrated,
medications are given for symptom
management, and family needs are being
addressed.
This is the provision of supportive or palliative
treatment.
Fadul N, Elsayem A, Palmer JL, et al. (2009). Supportive versus palliative care: what's in
a name? A survey of medical oncologists and midlevel providers at a comprehensive
cancer center. Cancer.
Supportive Versus Palliative Care:
What's in a Name?



When patients are given a choice between
pursuing non-evidence based, unproven lifeprolonging interventions (frequently called
treatments), or
receiving only Palliative Care,
they might opt for treatment only because they
view any treatment as preferable to care.
Fadul N, Elsayem A, Palmer JL, et al. (2009). Supportive versus palliative care: what's in
a name? A survey of medical oncologists and midlevel providers at a comprehensive
cancer center. Cancer.
Supportive Versus Palliative Care:
What's in a Name?

Physicians & patients are more
responsive to “hospice treatment”
rather than end of life care.
Fadul N, Elsayem A, Palmer JL, et al. (2009). Supportive versus palliative care:
what's in a name? A survey of medical oncologists and midlevel providers at
a comprehensive cancer center. Cancer.
A.N.D. (Allow Natural Death)



“If your heart stops, we are going to let
you die peacefully.”
“We will give you medicines to help make
your breathing more comfortable.”
These phrases truthfully communicate the
care that clinicians have and prevents the
patient/caregiver from feeling that ‘care
has been withdrawn’
A.N.D. orders vs
D.N.R. orders


Perceptions can be everything 



Positive
Supportive
Non-abandonment
Empathy
Palliative Care
an approach to care that improves quality of
life of patients and their families facing
life-threatening illness, through prevention,
assessment, and treatment of pain and other
physical, psychological, and spiritual
problems.
(WHO, 1982)
Palliative Care:
 Supports the patient and family’s goals for
the future, during whatever time they
have remaining
 as well as their hopes for peace and
dignity throughout the course of illness,
the dying process, and death.
 Prevents and relieves suffering and
promotes the best possible quality of life
American Academy of Hospice and Palliative Medicine
How do you attend to the thoughts
and concerns of the dying when
medicine has made it almost
impossible to be sure who the dying
even are?
 Is someone with terminal cancer,
dementia, or incurable congestive
heart failure dying, exactly?

Atul Gawande MD, The New Yorker, August, 2, 2010
Prognosis Can Be Difficult to Predict
Life Shortening Illness
Actively Dying
120
CANCER
80
CHF
60
DEMENTIA
40
COPD
20
12
/1
10
/1
8/
1
6/
1
4/
1
2/
1
0
1/
1
Function
100
Potential Goals of Care




Cure of disease
Avoidance of
premature death
Maintenance or
improvement in
function
Prolong life





Relief of suffering
Quality of life
Staying in control
A good death
Support for families
and loved ones
Palliative Care’s Place in the Course of Illness
Diagnosis
of Serious
Illness
Palliative Care
Medicare
Hospice
Benefit
DEATH
Palliative Care


Focuses on the patient and family
preferences, not just on the patient’s
disease process.
Seriously ill people often feel as though
they are lost among many
specialists focused on body organs.






> 5800 hospitals in the US – 2009
Over 1300 hospitals have palliative care
programs.
Palliative Care Services reduce hospital
cost and length of stay;
reduce utilization of critical care beds;
improve care of patients near end of life;
optimize symptom management.
What Is Hospice?



A program for patients who have a
limited prognosis or life expectancy –
Usually, 6 months or less
Goals:



Relief of pain and other symptoms
Psycho-social support
Benefit covered by medicare, medicaid,
and most insurance companies at no cost
to the patient.
Hospice provides:




Regular visits by nurse, hospice aide, &
social worker to allow family to care for
patient at home
Volunteers, clergy – as desired
Medications to manage pain and symptoms
related to the terminal diagnosis
Supplies, medical equipment, 24 hour RN
and physician availability
Hospice does not =
 morphine drip, or
 giving up
Dr. Atul Gawande – surgeon and staff member of
Brigham and Women’s Hospital and
the Dana Farber Cancer Institute in Boston
“Letting Go”, The New Yorker, August, 2, 2010

“Like many people, I had believed
that hospice care hastens death,
because patients forgo hospital
treatments and are allowed high-dose
narcotics to combat pain.”
Hospice




But studies suggest otherwise.
A study of 4,493 Medicare patients with
either terminal cancer or congestive heart
failure, found no difference in survival time
between hospice and non-hospice patients
with
breast cancer,
prostate cancer, and
colon cancer.

Atul Gawande MD, The New Yorker, August, 2, 2010
Hospice




Curiously, hospice care seemed to extend
survival for some patients;
those with pancreatic cancer gained an
average of three weeks,
those with lung cancer gained six weeks, &
those with congestive heart failure gained
three months.
Atul Gawande MD, The New Yorker, August, 2, 2010



Hospice care goes where the patient is –
home, assisted living, nursing home,
inpatient unit
80% of hospice care takes place in the
home
An RN case manager is assigned to each
patient to coordinate care and follow the
patient’s and family’s goals for end of life.
Hospice Care
Provides:





Patient & family control over decisions about care
Anticipation of disease progression and
preparation for patient decline
Short term inpatient care for crises or respite
Option for patient to die at home & be
pronounced by an RN (without calling 911)
Grief counseling for 1 year following patient’s
death
Conditions for Hospice Eligibility
Under Medicare




Order for certification of terminal illness
and admission to hospice by patient’s attending
physician and Hospice Medical Director
Patient chooses hospice benefits rather than standard
Medicare*
Patient chooses palliation as goal, rather than cure
Under Medicare, DNR status cannot be used as a
requirement for admission
*Patient may choose to revoke Hospice Care and revert
to Cure-Oriented Care at any time
Diseases with Coverage Guidelines
indications of terminality




Liver disease
Renal disease
ALS disease
(Amyotrophic Lateral
Sclerosis; Lou Gehrig's
Disease )
HIV disease






Heart disease
Alzheimers &
dementia
Pulmonary disease
Stroke and/or coma
Adult failure to thrive
Neurologic disorders
Medicare requires recertification every 60 days to
assess and document continued appropriateness
for the hospice benefit.
Benefits of Hospice Care





Interdisciplinary, collaborative
Cost-effective
Extremely high patient and family
satisfaction
Improves quality of life
Patients can revoke to pursue treatment
or testing and then readmit, if desired
Comparing
Hospice vs. Palliative Care
Hospice Services
Patient population

Patients with life-limiting
illness; 6 months or less
Sites of care
• Home, NF, Assisted living,
hospital, hospice inpatient
unit
Hospital-Based Palliative
Care Services
 Patients at any stage of
advanced or life-limiting
illness;
 May continue with
curative treatments
Hospital;
• outpatient or NF services
varies by program
- no home care services

Comparing
Hospice vs. Palliative Care
Hospice Services
 Pain & symptom
management,
psychosocial, volunteer,
spiritual, bereavement
support
 Coordinated care
delivered by IDT
(physician, nurse, SW,
clergy, aide, volunteer,
pharmacist, therapist)
Hospital-Based Palliative
Care Service

Pain & symptom
management

Services vary by
program from a single
MD to NP, SW, nurse,
clergy, psychologist,
counselors, therapy
Comparing
Hospice vs. Palliative Care
Hospice Services
 Program reimbursed by
medicare, medicaid,
insurance
 Medications, supplies,
durable medical
equipment – provided at
no cost to patient
 Family bereavement
support for 1 year after
death
Palliative Care Services
 Physician consult is paid
 All other services are
non-reimbursed
Texas Palliative Care (TPC)






The only palliative care service in east Texas
Service began October, 2008 and is offered at
Mother Frances Hospital and ETMC in Tyler
Dr. Laura Ferguson, Dr. Thomas Beets, Dr. Keith
Frazier, Dr. Craig Gunter – all board certified in
Hospice and Palliative Medicine
80 new consults/month in hospital (roughly
3/day)
HOET part-time RN, hospital social work and
clergy
½ day clinic twice monthly (4 – 5 patients)

primarily pain management
Texas Palliative Care (TPC)
Hospital consults
1. “having the talk”
2. concerns R/T life support (withholding or
withdrawing)
3. medical futility, family insistence on care,
family disagreement
4. pain and symptom management
5. medical evaluation regarding patient
capacity
TPC Hospital Consults




30-40% - 1 time consult resulting in agreement
on withdrawal of life support (resulting in death
or transfer to hospice)
30–40% - multiple MD or RN visits to discuss
options, answer questions, provide emotional
and psychosocial support -resulting in death or
transfer to hospice
15-20% - multiple MD or RN visits resulting in
transfer to skilled care (home health, nursing
facility, rehab, or aggressive care)
2% - strictly pain and symptom management;
followed in clinic
TPC benefits
Rate of hospital readmission has
declined significantly on all patients
consulted
 Decreased length of hospital stay,
especially critical care
 + 50% of all consults enroll in a
hospice program (reinforces the skill
needed for end of life prognostication)

Coping with Cancer Study
NCI and Dana-Farber Cancer Institute
October 2008





Patients who recalled having end of life talks
with their physicians:
were more likely to accept that their illness was
terminal;
preferred comfort care over life-extending
therapies;
received less aggressive medical treatment,
such as resuscitation or admission to an
intensive care unit;
and enrolled earlier in hospice programs.
Coping with Cancer Study
More aggressive medical care was
associated with worse patient quality
of life and worse adjustment by
patients' bereaved caregivers.
 Moreover, 6 months after the patients
died,
 their family members were much less
likely to experience persistent major
depression.

Excerpts from HOET family
interviews
“When the doctor told us it was time for
hospice, I was surprised.”
“I don’t know what I expected…
that at the end, we would just
disappear and arrive in heaven….
I never thought about it.”
 Our every impulse is
to fight….
and we want choices,
but,
Hope
is not a plan.
Everyone Wants To Go To
Heaven….
But Nobody Wants to Die