Download Palliative care

Palliative care in the US
David J Casarett MD MA
Division of Geriatrics
University of Pennsylvania
Outline
 Death and dying in the US
 What is a good death?
 Problems/opportunities for improvement:
» Pain and symptom management
» Prognosis
» Discussions/preferences
 Solutions?
» Hospice
» Palliative care
 Ideal palliative care in the US
Death and dying in the US:
Cause of death (2000)
 #1: Heart disease
 #2: Cancer
 #3: Cerebrovascular disease
 #4: Chronic lower respiratory disease
 #5: Unintentional injuries
 #6: Diabetes
 #7: Acute respiratory infection
 #8: Alzheimer’s Disease
 #9: Renal Failure
 #10: Sepsis
Trajectories of functional decline
CHF/COP
D
Cancer
Dementia
Death and dying in the US:
Trajectories of illness (>65)
On average, >2 years of significant disability
before death
Illness that will eventually be fatal is
diagnosed about 3 years before death
80% of patients die after a lengthy period of
decline that is either:
» Steady, unidirectional (Dementia)
» Intermittent with exacerbations (Heart failure,
Emphysema, Coronary Artery Disease, Cancer)
Death and dying in the US: Costs
Costs
Lifespan (years)
Epidemiology: General points
Most deaths in the US occur in patients > 65
year old
Deaths are usually the result of chronic,
progressive illness, particularly in older
patients
Costs (borne by health system, patients,
families) increase gradually over the last
years of life
How well are we doing in ensuring a
good death?
What is a good death?
How well are we doing in providing a good
death?
» Pain and symptom management
» Discussing prognosis
» Communication about goals and preferences
What is “a good death”?
Unique to each individual and dependent on
culture (Have to ask patient)
But several clear themes:
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Physical comfort
Psychological/emotional well-being
Spiritual peace
Dignity
Control
Time with family, closure
How well are we doing?
Pain and symptom epidemiology
Multisite WHO collaborative study of cancer
patients, Vaino et al 1996:
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Moderate-severe pain:51%
Anorexia: 30%
Weakness: 25%
Constipation: 29%
Nausea: 20%
Dyspnea: 21%
How well are we doing?
Pain and symptom management
Multisite inpatient SUPPORT study, Lynn:
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Severe pain: 40%
Severe dyspnea: 40-50%
Confusion: 18%
Fatigue: 80%
Multisite ECOG cooperative study, Cleeland:
» 67% any pain
» 42% of those with pain had inadequate analgesic
medications prescribed
» Inadequate analgesia 3x as common among
minorities
How well are we doing?
Communication
44% of bereaved family members of
elderly deceased cited communication
about prognosis as very important,
Hanson 1997
85% of cancer patients stated that they
wanted all information, good and bad,
Cassileth 1980
Challenges of estimating prognosis:
How long will this patient live?
Patient:
» 74 year old
» Class IV heart failure (symptoms at rest)
» Diabetes, renal failure
1-2 months
How accurate are we at
prognostication?
Study
Median
Estimate
Median
Actual
Estimate/
Actual
Parkes, 1972
4.5
2.0
1.8
Heyse-Moore, 8
1987
2
4
Forster, 1988
7
3.5
2
Christakis,
2000
N/A
N/A
5.3
How good are we at communicating
prognosis estimates?
326 patients referred to hospice by 258
physicians, Lamont 2001
» Overestimated prognosis by factor of 1.2
» Communicated an overestimated prognosis by
factor of 3.5
How well are we doing?
Communication about preferences
SUPPORT study, SUPPORT investigators 1995:
» 47% of physicians knew when their patients wanted
to avoid CPR
» 40% of patient/family-physician pairs discussed CPR
Medicare resource use study, Teno 2002:
» 20% of seriously ill Medicare patients said their care
was too aggressive
Summary of problems and
opportunities
 Pain and other symptoms
» Common
» Often poorly managed
» Uneven burden (non-white patient, older patients)
 Prognosis
» Inaccurate
» Difficult to communicate
 Communication
» Inadequate attention to patient preferences
» Missed opportunities to initiate discussions
Solutions
Palliative care
Two ways of delivering palliative care in the
US:
» Hospice
» Palliative consults
Palliative care
Palliative care is an approach that improves
the quality of life of patients and their families
facing the problems associated with lifethreatening illness…(WHO):
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Symptom relief
Psychological and spiritual well-being
Maintains function
Applicable throughout serious illness
2 definitions of palliative care
Narrow definition: “Comfort care”, focus only
on providing comfort and relieving symptoms.
Palliative care provided near the end of life
when there are no further treatment options
Broad definition: WHO definition, holistic care
provided throughout illness. Palliative care
provided when there are no further treatment
options and in parallel with active treatment.
2 Definitions of palliative care:
Active treatment
Comfort
care
Throughout illness
Diagnosis
Death
How can we improve end of life
care?
Patient: 74 years old, CHF, diabetes.
» Symptoms: Pain, dyspnea
» Uncertainty about prognosis
» Needs additional social support at home
Hospice care in the US
 Hospice industry:
» ~5,200 organizations nationwide
» >1,300,000 patients/year
 Interdisciplinary team (Physician, nurse, social
worker, chaplain, volunteer)
 Hospice services
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Care provided in home, acute care, long term care
Medications related to hospice diagnosis
Respite care (5 consecutive days)
Home health aide services (2 hours/day)
Bereavement follow up and counseling for >1 year
Hospice eligibility
 Prognosis of 6 months or less if the illness runs its
usual course, according to 2 physicians
» Referring MD
» Hospice medical director
 Hospice reimbursement often requires that additional
criteria are met:
» Developed by NHPCO
» Promulgated by Fiscal Intermediaries
» Complex, difficult for clinicians to remember and use
effectively
Hospice: an ideal solution?
“Narrow”/Comfort care
Theoretical problems:
» Eligibility is difficult to determine
» Prognosis is challenging
» Must give up access to many life-sustaining
treatments:
• ICU admission
• Chemotherapy (unless it’s purely palliative)
• Not CPR (DNR order not required)
Hospice: an ideal solution?
Uneven access (decreased hospice referrals
among):
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Younger patients
African Americans
Nursing home residents
Patients with non-cancer diagnoses
Hospice: an ideal solution?
Practical problems:
» Late referrals
• Median length of stay in hospice=21 days
• 1/3 referred in last week of life
• 10% referred in last 24 hours
» Early referrals
• 6% of patients “outlive” the hospice benefit
• Concerns (among physicians and hospices) of
censure/non-payment for inappropriate referrals
Hospice summary
 Ideal source of care
» Interdisciplinary team
» Range of benefits and services
 Extensive infrastructure
 Revenue stream
 But:
» Requires prognostic estimates
» Penalties for inappropriate referrals
» Result is very short lengths of stay and inadequate utilization
Alternative: Palliative consults
Consultation by a nurse or physician
Done in multiple settings:
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Hospital (approximately 40% of hospitals)
Nursing home
Clinic
(Home)
Palliative consults: eligibility
Broad definition of eligibility
» All patients, regardless of prognosis
» Can continue to receive aggressive treatment
Palliative consults: Services
Services vary widely
Some combination of:
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Physician
Nurse
Social worker
Chaplain
Palliative consults: Problems
Unlike hospice, no dedicated source of
funding
Consult services supported financially by:
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Some billing of insurance companies
Donations
Volunteer effort
“cost savings”
Lack of funding has limited growth
Summary of hospice and palliative
care
Hospice:
» Home/hospital/nursin
g home
» Dedicated funding
» Clear guidelines and
requirements for
services
» System of quality
measurement
» Strict eligibility
criteria
Palliative care
» Mostly hospital,
some nursing home
» No dedicated
funding
» No guidelines and
requirements for
services
» No system of quality
measurement
» Open eligibility
criteria
Ideal palliative care?
Continuous—ensuring that all patients have
access when they need care
Begins at diagnosis, and continues through to
include bereavement support for family
Paid for like other medical care
Clear standards for high-quality care
Ideal palliative care doesn’t exist in the US
The future of palliative care in the US
Growing palliative consults:
» Extension into nursing homes
» Care for patients at home
Increasing access to hospice:
» More patients benefiting
» Patients enrolling earlier
Progress is slow but steady
Outline
 Death and dying in the US
 What is a good death?
 Problems/opportunities for improvement:
» Pain and symptom management
» Prognosis
» Discussions/preferences
 Solutions?
» Hospice
» Palliative care
 Ideal palliative care in the US