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Palliative care in the US

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

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Palliative care in the US

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  1. Palliative care in the US David J Casarett MD MA Division of Geriatrics University of Pennsylvania

  2. 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

  3. 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

  4. Trajectories of functional decline CHF/COPD Cancer Dementia

  5. 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)

  6. Death and dying in the US: Costs Costs Lifespan (years)

  7. 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

  8. 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

  9. 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

  10. 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%

  11. 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

  12. 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

  13. 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

  14. How accurate are we at prognostication?

  15. 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

  16. 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

  17. 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

  18. Solutions • Palliative care • Two ways of delivering palliative care in the US: • Hospice • Palliative consults

  19. 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

  20. 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.

  21. 2 Definitions of palliative care: Active treatment Comfort care Throughout illness Diagnosis Death

  22. 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

  23. 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

  24. 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

  25. 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)

  26. Hospice: an ideal solution? • Uneven access (decreased hospice referrals among): • Younger patients • African Americans • Nursing home residents • Patients with non-cancer diagnoses

  27. 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

  28. 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

  29. Alternative: Palliative consults • Consultation by a nurse or physician • Done in multiple settings: • Hospital (approximately 40% of hospitals) • Nursing home • Clinic • (Home)

  30. Palliative consults: eligibility • Broad definition of eligibility • All patients, regardless of prognosis • Can continue to receive aggressive treatment

  31. Palliative consults: Services • Services vary widely • Some combination of: • Physician • Nurse • Social worker • Chaplain

  32. 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

  33. Summary of hospice and palliative care • Hospice: • 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

  34. 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

  35. 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

  36. 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

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