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/COPD 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 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: 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: 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: 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? 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/ Parkes, 1972 4.5 2.0 1.8 Heyse-Moore, 1987 8 2 4 Forster, 1988 7 3.5 Christakis, 2000 N/A 5.3 Christakis N.A. Extent and Determinants of Error in Doctor’s Prognoses in Terminally Ill Patients: Prospective Cohort Study. BMJ 2000;320:469-72 343 physicians asked to give survival estimates for 468 terminally ill patients at time of referral to a hospice 20% accurate (within +/- 33% of actual survival Overestimated by factor of 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 Patients often do not understand their dx. In a study of 100 patients, 1/3 with mets thought that they had localized, and therefore treatable disease. This study was undertaken to evaluate how often physicians favor communication of frank survival estimates to patients with terminal cancer Interviewed physicians from different subspecialties who referred patients to hospice..when they were admitted to hospice, researchers called MD for phone interview

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 life-threatening illness…(WHO): 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 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): 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 Extensive infrastructure 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: 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: Physician Nurse Social worker Chaplain

Palliative consults: Problems Unlike hospice, no dedicated source of funding Consult services supported financially by: Some billing of insurance companies Donations Volunteer effort “cost savings” Lack of funding has limited growth

Summary of hospice and palliative care Home/hospital/nursing 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