The Clinical Essentials of
Palliative Care
Diane E. Meier, MD
Center to Advance Palliative Care
in Hospitals and Health Systems
a Robert Wood Johnson Foundation - Mount Sinai School of Medicine initiative
www.capc.org
041304
Case: Joan Smith
•87-year-old with advanced dementia, stage IV
pressure ulcer, fever, hypotension
•Hospitalized
•Surgical debridement
•Persistent fever
•Repeat surgeries
•Septic, hypotensive, on pressors in the ICU
•Patient constantly moaning, agitated unless
sedated
Objectives
•
•
•
•
What is palliative care?
Why do patients need it?
How do physicians provide it?
Where can you learn more?
What Is Palliative Care?
Medical treatment that aims to
relieve suffering and improve quality
of life simultaneously with all other
appropriate treatment for patients
with advanced illness, and their
families.
Specifically:
Palliative Care Is
 Excellent, evidencebased
medical treatment
 Vigorous care of
pain and symptoms
throughout illness
 Care that patients
want at the same time
as efforts to cure or
prolong life
Palliative Care Is NOT
Not “giving up” on a
patient
Not in place of
curative or lifeprolonging care
Not the same as
hospice
Palliative Care in Practice
• Expert control of pain and symptoms
• Uses the crisis of the hospitalization to
facilitate communication and decisions
about goals of care with patient and family
• Coordinates care and transitions across
fragmented medical system
• Provides practical support for family and
other caregivers
Current system:
Cure versus Care Model
D
Life
Prolonging
Care
Medicare
Hospice
E
Benefit
A
T
Disease Progression-years
H
Palliative Care’s Place in the Course of Illness
Life Prolonging Therapy
Death
Diagnosis of
serious
illness
Palliative Care
Medicare Hospice
Benefit
Why do patients need
palliative care?
Palliative care imperatives:
Clinical
Educational
Fiscal
Demographic
Demand
The Clinical Imperative
• Numerous studies document patient suffering:
pain, nausea, breathlessness, anxiety,
depression, fatigue
• Poor to non-existent communication in the
hospital: physicians typically elicit fewer than
half of patients’ concerns and don’t discuss
values, goals of care, and treatment decisions
Tulsky, 2003; Maguire 1999; Heaven 1997
Self-Reported Symptom Experience of
Critically Ill Cancer Patients Receiving Intensive Care
Nelson JE, Meier DE, Oei EI et al. Crit Care Med 2001;29:277-282
100
Moderate
Percent of patients with symptoms at
moderate or severe level
90
80
75%
70
71%
68%
63%
60
Severe
56% 55%
50
39%
40
30
20
10
B
SO
io
n
ep
re
ss
H
Pa
in
ie
ty
An
x
Sl
ee
pi
ng
Th
ir
st
un
ge
r
D
D
is
co
m
fo
rt
0
34%
Patients Asking For Physician Assisted
Suicide:
By any measure, a sign of serious distress
• National representative survey: One in five
U.S. physicians have received at least one
request to help a terminally ill patient die.
• One in twenty have honored one or more
requests
• Primary predictors of honoring a request:
Severe pain
OR 2.4
Severe discomfort OR 6.5
Meier et al. N Engl J Med 1998;338:1193. Meier et al. Arch Int Med 2003;163: 1537.
The Fiscal Imperative
National Health Expenditure Growth
1970-2003
16
Annual % Change
14
12
10
8
6
4
2
0
1970
1975
1980
1985
1990
1995
2000
HCFA, Office of the Actuary, National Health Statistics Group, 2003
The Fiscal Imperative
• Exponentially rising costs with effective new
technologies, aging population• $1.4 trillion in 2002
• 9.2% growth in Medicare hospital payments in
2001
• 76% of 2002 Medicare budget spent on hospital
care ($198 billion)
• Hospital of the future will have to efficiently
and effectively treat chronically and seriously
ill in order to survive
The Demographic Imperative:
Is this patient ‘terminally ill’?
• 94 y/o with myelodysplastic
syndrome, congestive heart
failure, a systolic blood
pressure of 100, and shortness
of breath at rest or with mild
exertion. She is treated with
monthly transfusions, an ACE
inhibitor, a beta blocker, and
judicious use of diuretics.
Is this patient terminally ill?
(slide courtesy of Joan Teno MD, Brown University)
The Demographic Imperative
The Reality of the Last Years of Life:
Death is not Predictable
19
97
12
/1
/
19
97
10
/1
/
99
7
8/
1/
1
99
7
6/
1/
1
99
7
4/
1/
1
99
7
CANCER
CHF
2/
1/
1
99
7
100
90
80
70
60
50
40
30
20
10
0
1/
1/
1
Function
(slide courtesy of Joanne Lynn, MD Rand Corp.)
The demographic imperative:
Chronically ill, aging population is growing
• The 63% of Medicare patients with 2 or
more chronic conditions account for 95% of
Medicare spending (CDC)
• The number of people over age 85 will
double to 9 million by the year 2030 (CDC)
Demand for palliative care:
What patients and families want from the
healthcare system
• Pain and symptom control
• Avoid inappropriate prolongation of the
dying process
• Achieve a sense of control
• Relieve burdens on family
• Strengthen relationships with loved ones
Steinhauser, et al. Ann Intern Med 2000; 132: 825-32
Singer et al, JAMA 1999
What Do Family Caregivers Want?
Study of 475 family members 1-2 years after bereavement
•
•
•
•
•
•
•
•
•
•
Loved one’s wishes honored
Inclusion in decision processes
Support/assistance at home
Practical help (transportation, medicines, equipment)
Personal care needs (bathing, feeding, toileting)
Honest information
24/7 access
To be listened to
Privacy
To be remembered and contacted after the death
Tolle et al. Oregon report card.1999 www.ohsu.edu/ethics
Palliative Care
“Modern
Medicine”
Hospice
How does PC help patients?
Palliative care effectively responds to
these imperatives:
Clinical
Educational
Fiscal
Demographic
Demand
Palliative Care Improves Quality
Data demonstrate that palliative care:
• Relieves pain and distressing symptoms
• Supports on-going re-evaluations of goals of care and
difficult decision-making
• Improves quality of life, satisfaction for patients and their
families
• Eases burden on providers and caregivers
• Helps patients complete life prolonging treatments
• Improves transition management
Campbell et al, Heart Lung, 1991; Campbell et al, Crit Care Med, 1997; UC Davis Health
System News; 2002; Carr et al, Vitas Healthcare, 1995; Franklin Health, 2001; Dartmouth
Atlas, 2000; Micklethwaite, 2002; Du Pen et al, J Clin Oncol, 1999; Finn et al, ASCO,
2002; Francke, Pat Educ Couns, 2000; Advisory Board, 2001; Portenoy, Seminars in
Oncol, 1995; Ireland Cancer Center, 2002; Von Roenn et al, Ann Intern Med, 1993; Finn J
et al ASCO abstract. 2002; Manfredi et al JPSM 2001; Schneiderman et al. JAMA 2003;
Higginson et al JPSM 2002 & 2003; Smith et al. JCO 2002, JPM 2003; Coyne et al. JPSM
2002; www.capc.org.
Improvement in Symptoms for
2500 Mount Sinai Hospital Patients followed by
the Palliative Care Service (6/97-10/02)
Severe
Pain
Nausea
Moderate
Dyspnea
Mild
None
Initial Evaluation
Final Evaluation
Percent of Palliative Care Families
Satisfied or Very Satisfied Following
Their Loved Ones Death With:
•
•
•
•
•
Control of pain - 95%
Control of non-pain symptoms - 92%
Support of patient’s quality of life - 89%
Support for family stress/anxiety - 84%
Manner in which you were told of patient’s
terminal illness - 88%
• Overall care provided by palliative care
program- 95%
Source: Post-Discharge/Death Family Satisfaction
Interviews, Mount Sinai Hospital, New York City
Palliative Care Is Cost-Saving,
supports transitions to more appropriate care settings
• Palliative care lowers costs (for hospitals and
payers) by reducing hospital and ICU length of
stay, and direct (such as pharmacy) costs.
• Palliative care improves continuity between
settings and increases hospice/homecare/nursing
home referral by supporting appropriate transition
management.
Lilly et al, Am J Med, 2000; Dowdy et al, Crit Care Med, 1998; Carlson et al, JAMA, 1988;
Campbell et al, Heart Lung, 1991; Campbell et al, Crit Care Med, 1997; Bruera et al, J Pall
Med, 2000; Finn et al, ASCO, 2002; Goldstein et al, Sup Care Cancer, 1996; Advisory Board
2002; Project Safe Conduct 2002, Smeenk et al Pat Educ Couns 2000; Von Gunten JAMA
2002; Schneiderman et al JAMA 2003; Campbell and Guzman, Chest 2003; Smith et al. JPM
2003; Smith, Hillner JCO 2002; www.capc.org.
How do physicians
provide
palliative care?
Domains of Palliative Care
• Communication, help with medical
decision-making
• Expert symptom assessment and
treatment
• Psychosocial and practical support, care
coordination, and bereavement services
Communication
• Essential to practice of palliative medicine:
decreases anxiety, improves well-being,
satisfaction with providers and health care, and
outcomes
• Good communication: honesty, willingness to
talk about dying, sensitive delivery of bad news,
listening, and encouraging questions.
• MD role: Articulating choices, likely benefits and
burdens, and helping patient/family to make
medically appropriate decisions in keeping with
their goals.
How to Communicate
• Establish realistic, attainable goals of care
– Help patients and families understand scope
of illness and likely progression
– Identify relevant values and goals
– Define “acceptable” and “unacceptable”
quality of life
– Define choices to be made and their benefits
and burdens
– Help with decision-making
– Develop care plans that maximize chances
that goals will be achieved
Communication Protocol
Establishing Goals of
Medical Care
Communicating
Bad News
Withholding/Withdrawing
Treatment
Get started and create the right setting: Plan what to say, create a conducive
setting, allow adequate time, and determine who else should be present
Establish what the
patient knows: Clarify
the situation and context
in which the discussion
about goals is occurring
Establish what the
patient knows: What is
known, access ability to
comprehend, reschedule if
unprepared
Establish and review
the goals of care
Explore both what
patients are expecting
and hoping to
accomplish: Help
identify realistic and non
realistic goals
Establish how much the
patient wants to know?
Recognize and support
different preferences.
People handle information
differently
Establish the context of
the current discussion:
What has changed to
precipitate the
discussion?
Suggest realistic goals:
Explore how goals can
be achieved and work
through unreasonable/
nonrealistic expectations
Share the Information:
Say it then stop (avoid
jargon, pause frequently,
check for understanding,
use silence), don’t
minimize the information
Discuss specific
treatment(s) in context
of goals of care: Will
continuation or initiation
of the treatment meet
the goals of care?
Protocol, continued
Discuss alternatives to
the proposed treatment
and what will happen if
the patient decides not
to have the treatment
Respond empathetically to feelings: Be prepared for strong emotions and allow
time for response, listen, encourage description of feelings. Allow silence
Make a plan and
follow through: What
treatments will be
undertaken to meet
goals. What treatments
will not be utilized.
Establish a concrete plan
for follow-up
Review and revise
periodically as needed
Planning/Follow up:
Plan for next steps,
discuss potential sources
of support, give contact
information, assess patient
safety and supports, repeat
news at future visits
Document, disseminate
(i.e., to family, other
healthcare team
members), and
implement plan for
withdrawal of
treatment
Symptom Assessment and Treatment
3 items necessary for good pain and
symptom management:
1. Routine and repeated assessment
2. Skill in prescribing
3. Treatment of side effects
Symptom Assessment and Treatment
• Pain management
– Pain meds administered on standing or regular
basis
– PRN or rescue doses available for breakthrough
pain or pain not controlled by regimen
– All patients on opioids should be started on a
bowel regimen
– WHO analgesic ladder should be used as a
guide for most pain syndromes
WHO Analgesic Ladder
Mild Pain (1-3/10 on a 10 point scale): Begin
acetaminophen or a non-steroidal antiinflammatory agent
(consider opioids instead in older adults)
Moderate Pain (4-7/10): Begin an opioid combination product
(acetaminophen + codeine, acetaminophen + oxycodone,
acetaminophen + hydrocodone) and dose based upon
opioid half life (3-4 hours) not acetaminophen half life (6-8
hours).
Severe Pain (8-10/10): Begin a strong standing opioid
(hydromorphone, morphine sulfate, oxycodone) and titrate
until pain relief is obtained or intolerable side effects
develop. Long acting opioids (sustained release
morphine/oxycodone, transdermal fentanyl) should be
started after pain is well controlled and steady state is
Symptom Assessment and
Treatment: Pain
– Rescue doses employing immediate release opioids,
dose should be 10% of the 24 hour total opioid dose
and given every hour (oral) and every 15 - 30
minutes (parenteral) as needed. Methadone should
only be used by clinicians experienced in its use.
– Adjuvant agents (corticosteroids, anticonvulsants,
tricyclic antidepressants, bisphosphonates) should be
employed for specific pain syndromes when
applicable (e.g., neuropathic pain).
50% of pain management =
side effect management
• Constipation
• Nausea
• Confusion, sedation
Constipation
• Does not resolve!
• Morbidity: obstruction, nausea, delirium,
perforation, death
• Prevention; monitoring; check for and treat
impaction
• Rx: softeners, polyethylene glycol powder
Miralax, senna, bisacodyl tabs or
suppositories, sorbitol, mg citrate, enemas
Nausea
• CTZ- area postrema of medulla;
vestibular; delayed gastric emptying
• Tolerance develops: Usually resolves after
3 – 5 days
• If persistent nausea – evaluate for other
causes
• Metoclopramide, haloperidol,
diphenhydramine (DA, 5HT, histamine)
Sedation
• Side effect versus need to catch up on sleep after pain
resolves
• Tolerance develops rapidly (hours)
• Sedation always predates respiratory depression
• If RR < 8 and patient unarousable, use 10:1 dilution of
naloxone, tirate to arousal, and monitor closely
• Naloxone half life = minutes
• Persistent sedation usually multifactorial
• Rx- identify and treat underlying contributors, opiate
dose adjustment, opiate rotation, antipsychotics,
psychostimulants,
If you don’t ask you won’t know.
Routine assessment is prerequisite to good
symptom management.
– Pain
– Weakness
– Fatigue
– Anorexia/cachexia
– Constipation
– Dyspnea
– Nausea
– Constipation
– Anxiety
– Depression
– Delirium
– Sleep
– Energy
– Hopes and fears
– Biggest concern
– Tools at
www.promotingexcellence.org
Practical Support and Care Coordination:
Mobilizing Community Resources
• 95% of the illness and the care occurs at home
• Families provide >70% of long term care
• Most patient/family needs cannot be met in
physician offices and hospitals
• Physicians can help by coordinating array of
community services for patients and families –
Home safety and needs evaluation, PACE, visiting
RN/home care services, case management,
hospice, financial planning resources, Medicaid
eligibility, family support groups.
Case Study: What Actually Happened
82-year-old woman with hypertension, diabetes, renal failure
osteoporosis, vision loss.
Cycle of health crises- falls, fractures, pneumonia
•Hospitalized three times in 9 months
•Home with Medicare-Certified Home Health Agency, discharged
from homecare after 4 weeks- new crisis = hip fracture and
repeat hospitalization
•In pain, symptoms not managed- long hospital stay, resulting in
progressive deconditioning, weakness, functional decline
•Not ready for hospice but in need of more support in hospital
and ongoing transition management and care coordination at
home
Case Study:
What Should Have Happened
Palliative care for:
–Pain and symptom relief - facilitates success of
rehabilitation, reduces hospital length of stay
–Patient/family discussions re: needs/goals, advance
care planning
–Mobilizing home needs assessment
–Identification of ongoing support services at home
–Plan for coordination and monitoring after home care
‘skilled need’ terminates
–Support for gradual transition to hospice if and when
illnesses progress to terminal stage
Summary:
Domains of Palliative Care
• Communication and decision support
• Symptom assessment and treatment
• Psychosocial and practical support,
community care coordination, and
bereavement services.
More and more physicians
are providing palliative care
• Number of hospital-based palliative care
programs has doubled in recent years to more
than 800
• One in five hospitals now offers palliative care
• US News & World Report includes palliative care
in its criteria for “America’s Best Hospitals”
• ABHPM certifying more and more physicians
• Referral rates at established programs are
growing each year
Billings JA et al J Pall Med. 2001, AHA Survey 2002, Pan CX et al J
Pall Med. 2001
But…
• Number of palliative care programs,
specialists not sufficient to meet patient
need
• In absence of comprehensive palliative
care programs and PC specialists,
physicians need basic PC clinical skills
Where can you
learn more?
Education is Not Optional
Training opportunities
•
•
•
•
•
•
•
ELNEC
www.aacn.nche.edu/elnec
EPEC
www.epec.net
DELeTCC
www.deletcc.coh.org
EPERC
www.eperc.mcw.edu
AAHPM
www.aahpm.org
Harvard
www.hms.harvard.edu/cdi/pallcare/
Fellowship training
www.aahpm.org
• ANP palliative care training programs,
ANCC certification
www.hpna.org www.nursingworld.org
• MD Certification: ABHPM
www.abhpm.org
Tools and Training
Go to www.capc.org
1. Palliative Care Leadership Centers: six premier
palliative care programs hosting site visits and
providing ongoing mentoring
2. Web site: Comprehensive tools for starting and
sustaining palliative care services: billing for palliative
care services, clinical models, criteria for referral,
clinical forms and procedures, technical assistance
publications and presentations
3. CAPC seminars on building palliative care programs
4. EPEC: Education for physicians on palliative care
5. stoppain.org; palliativedrugs.com; growthhouse.org
“I don’t know enough about
palliative care.”
• Get training (EPEC, ELNEC, DELeTCC,
AAHPM-HPNA, Harvard advanced courses)
• Subscribe to the J of Palliative Medicine. Get
the Oxford Textbook of Palliative Medicine
• Do a site visiting program (Palliative Care
Leadership Centers, Cleveland Clinic, Beth
Israel Med Ctr in NYC, San Diego Hospice,
others)
• Take a year off and do a fellowship or an APN
degree program
“Our hospital doesn’t have
expertise in palliative care.”
• www.epec.net -MD
• www.aacn.nche.edu/
elnec -RN
•
•
•
•
www.deletcc.coh.org
www.EPERC.mcw.edu
APN www.hpna.org
Fellowships
www.aahpm.org
• Site visiting programs
• Read
• Harvard course
• Go to the AAHPM
annual meeting
• Use the web
– www.palliativedrugs.com
– www.growthhouse.org
– www.stoppain.org
• Learn by doing!
Other Resources
1. Communication and decision-making
2. Pain and symptom management
3. Care coordination, commmunity resources
for patients and families
Communication
1. Buckman R. How to Break Bad News: A Guide for
Health Care Professionals. Baltimore: Johns Hopkins
University Press, 1992 - The definitive guide for
communicating bad news.
2. Meier DE, Back AL, Morrison RS. The inner life of
physicians and care of the seriously ill. JAMA 2001;
286:3007-14. - Practical approaches to self care for
physicians caring for seriously ill patients
3. EPEC - A continuing medical education program
providing detailed protocols for major communication
topics (www.epec.net)
4. The Center for Palliative Care of Harvard University
Medical School - Continuing medical education
programs in communication skills for practicing
clinicians (http://www.hms.harvard.edu/cdi/pallcare/)
Symptom Assessment and Treatment
1. Doyle D, Hanks G, MacDonald N. Oxford Textbook of
Palliative Medicine: Second Edition. Oxford: Oxford
University Press, 1998. Comprehensive textbook of
palliative care.
2. Morrison RS, Meier DE. Geriatric Palliative Care. New
York: Oxford University Press, 2003. Comprehensive
textbook of palliative care focused specifically on older
adults.
3. Education for Physicians in End of Life Care www.epec.net
- A continuing medical education program providing
practical advice for managing pain and other symptoms
4. Fast Facts and Concepts on End of Life Care- Concise
evidence based summaries on treatment of common
symptoms www.mcw.edu/pallmed/html/about1.html
Psycho-Social Support and Care
Coordination
1.
2.
3.
4.
5.
6.
Elderweb- A comprehensive listing of services for older adults including
resources for personal care needs, care coordination, and home care
www.elderweb.com
EPEC - Contains modules on psycho-social support and grief and
bereavement www.epec.net
National Agency for Home Care and Hospice www.nahch.org and National
Hospice and Palliative Care Organization www.nhpco.org - Trade
organizations whose web sites provide comprehensive lists of member
home care agencies and hospices searchable by city and zip code.
Growthhouse - Grief and Bereavement Resources www.growthhouse.org
Bereavement and Hospice Support Netline –An online directory of
bereavement and hospice bereavement programs in the U.S
www.ubalt.edu/www/bereavement
Centers for Medicare and Medicaid Services (CMS) - Information about
Medicare coverage and Medicaid eligibility. Information about PACE
programs (including their location) and Medicare Choice Programs (which
may include case management) can also be obtained at www.cms.gov.
Objectives
•
•
•
•
What is palliative care?
Why do patients need it?
How do physicians provide it?
Where can you learn more?
Palliative Care: A Case Example
MJ was an 85 year old women with multiple medical problems including moderate
dementia, coronary artery disease, renal insufficiency, and peripheral vascular disease who
was admitted to Mount Sinai with urosepsis. Her hospital course was complicated by the
development of gangrene of her left foot resulting from her vascular disease, candidal sepsis,
multiple pressure ulcers, and recurrent infections. She underwent 5 debridements under
general anesthesia. When asked by the primary doctor, her family consistently said that they
wanted “everything done”.
On day 63 of her hospitalization, a palliative care consult was initiated to help
clarify the goals of care and to treat the patients’ evident pain and discomfort. She was
persistently moaning in pain and resisting all efforts to reposition or transfer her or to change
her dressings. The palliative care team met with her son (her health care proxy) and her two
grandchildren. During a 90 minute discussion, the team explored with the family what they
hoped to accomplish for the patient. The team reviewed the hospital course and clarified any
confusion about her diagnosis and prognosis. Possible sources of discomfort and pain were
identified. A treatment plan was initiated which included morphine sulfate to treat the pain
associated with her necrotic foot, discontinuing her antibiotics, withholding hemodialysis for
her acute renal failure, treating her fevers with acetaminophen, and transferring her to the
palliative care unit. The patient was subsequently discharged 2 days later when a bed at a
nursing home that had a hospice contract became available. The family expressed
tremendous satisfaction with the resolution of her hospitalization and continue to visit her
daily in the nursing home where she is reported to be interactive and comfortable.
Although the world is full of
suffering, it is also full of
the overcoming of it.
Helen Keller
Optimism, 1903