EOL & Hospice Care

1. EOL & Hospice Care EOL & Hospice Care James A Zachary MDLSU Health Sciences CenterHIV Outpatient Clinic December 13, 2004

2. EOL & Hospice Care

3. Hospice Care • Multidisciplinary program devoted to providing end-of-life care (6 months or less as defined by Medicare) • Palliative & spiritual care for patient • Psychological & spiritual support for family & friends • Usually outpatient • “Directed” by designated primary care provider or hospice director • Requires caretaker (or, assisted-living situation, eg Belle Reeve, Lazarus House) • Nursing home: payment problems?

4. Hospice Care • Most common diagnosis • End stage lung disease • Congestive heart failure • Dementia • Amyotrophic lateral sclerosis • Stroke • Acquired immunodeficiency syndrome (AIDS)

5. Hospice Care • Pre-hospice integration into care model • Treat to cure • Overly aggressive and expensive utilization of healthcare services • Patients and family express dissatisfaction with MD’s handling of dying patient

6. Hospice Care • Many physicians are uncomfortable taking care of dying patients • The fact that there may be no curative interventions is difficult to accept by some physicians • Patients and families may not be allowed to accept that their disease is terminal • In the final days of life, many patients receiving aggressive treatment may be denied the possibility of preparing for death and suffer physically, emotionally, and spiritually

7. Hospice Care • The Hospice model attempts to bring affirmation to the patient's life, while treating the dying patient on an emotional, spiritual, and physical level • When a cure is no longer possible, the goal is to keep the patient comfortable (palliation) • Health care providers who do not have adequate training or experience in palliative care may exhibit inappropriate attitudes toward the terminally ill, resulting in needless suffering

8. Hospice Care • Patients with poor symptom control not only have their quality of life adversely affected but often become socially isolated and withdrawn • In the final days of life, terminally ill patients with inadequate symptom control may miss the opportunity to be surrounded by family and friends and may not experience a peaceful and tranquil death • Hospice care picks up where curative therapy ends allowing the provider to feel assured that they have done their best throughout the patient’s life!

9. Growth of Hospice Care in US Clinics in Office PracticeVolume 28 • Number 2 • June 2001

10. Growth of Hospice Care in US Clinics in Office PracticeVolume 28 • Number 2 • June 2001

11. History of Hospice • Saunders founded the first modern hospice in England in 1967 (St Christopher’s) • Team concept pioneered there • Saunders introduced aggressive pain management • Saunders demonstrated that hospice care could be effective administered in patient’s home

12. History of Hospice • Success of St Christopher’s opened up the door for hospices to open in Europe and Canada • First American hospice was established in New Haven, Connecticut, funded by the National Cancer Institute as a national demonstration project for home care of the terminally ill and their families • The first hospices in the United States relied mostly on grants and donations to serve the terminally ill and at first were staffed entirely by professional and lay volunteers. • In 1982, Congress passed the Tax Equity and Fiscal Responsibility Act, which authorized Medicare to reimburse hospices for the care of the terminally ill who met specific criteria.

13. Hospice Care • Designed for 6 months or less length of stay per patient originally • Average length of stay: 6 days • Barriers to hospice referral • Poor knowledge of end-of-life prognostic factors in the appropriate disease process • Academic institution’s almost exclusive emphasis on diagnosis and cure • Evolving medical science: (false?) hope for cure • Unwillingness to provide/accept hospice referral • Patients: fear of death, fear of pain, cultural concerns • Family: loss of family member, loss of monetary support

14. Hospice Care • Providers poor referral rate to hospice • Lack of time • Lack of experience, or training in establishing and/or discussing prognosis and hospice care • Hard time “giving up” • Poor understanding of the hospice concept • Unfailing trust in the evolution of medical science

15. Overcoming Barriers to Hospice • Poor knowledge of end-of-life prognostic factors in the appropriate disease process • Study the relevant literature, or • Call in consultants with the appropriate prognostic knowledge • Experience! • Academic institution’s emphasis on diagnosis and cure • Develop curricula devoted to end-of-life issues • Psychological and spiritual issues • Communication issues • EOL mentoring by terminally-ill patients & appropriate faculty • Encourage specialized End-of-Life care programs

16. Overcoming Barriers to Hospice • Unwillingness to provide/accept hospice referral • Patients: distrust of medical system, fear of death, fear of pain, “go-stop” phenomena • Proactive discussion initiated early in provider-patient relationship • Advanced directives • Assurances of aggressive palliative care • Spiritual well-being • Consistent approach to prognosis and care • Family: loss of family member, loss of monetary support • Involvement with provider-patient early on in disease process • Advanced directives • Spiritual well-being • Providers: lack of time, experience, or training in discussing prognosis and hospice care • Emphasize critical humanistic importance of these issues • Encourage realistic communications at all times • Specialized EOL teams to assist with all of the above

17. MW • CD4 80 • Stage 4 adenoCa of lung with mets to brain • Other • Cachectic • Odynophagia • N + V • Back pain: cervical & lumbar • Pleuritic chest pain • Hgb 6 • Oral candidiasis • Constipation • Meds: fentanyl transdermal, oxycodone liquid, no ARVs

18. TB • 29 y/o female • Cryptosporidiosis with probable cholangial involvement • End stage liver disease due to chronic hep B (INR 5.6) • CD4= 3 • Other • Multiple recent hospitalizations • N + V, dehydration • Oral candidiasis • Chest pain • Depression • Family unaware of HIV dx (?) • Meds: lactulose, no ARVs

19. JK • 47 y/o male • End stage lung disease/COPD on home O2 • CD4 = 15 • Chronic inadherence (not seen in clinic x 8 mos) • Other • Malnourished • Still smoking • Very frequent admissions for resp failure • Meds: no ARVs, MDIs, antibiotics

20. BS • 43 y/o female • Chronic rifampin-resistant TB meningitis with paraplegia • Unable to swallow • Bed-bound • Large decubitus ulcers with osteomyelitis • PEG tube for hydration & feeds • Other • HIV/AIDS • No diverting colostomy • Husband died of AIDS in last year • Chronic pain • Meds: oxycodone liquid, no ARVs, anti-TB meds, fentanyl transdermal

21. RL • 39 y/o female • Severe AIDS dementia (unable to care for herself) • Multiple recent admissions • Mod severe pruritic HIV dermatitis • CD4 12 • No ARVs • Other • Lives at Lazarus House • Spells/syncope/seizures • Small superficial decubitus • Cholestatic hepatitis • Recent S pyogenes bacteremia

22. EK • 42 y/o male • Malnourished • Chemically dependent (cocaine/EtOH) • CD4-depleted (CD4 52 in 5/2000) • Multiple recent hospitalizations • Other • Lytic lumbar spine lesion • Proximal muscle weakness • Oral candidiasis • Homeless (living abandoned car) • Meds: no ARVs • Chronically inadherent

23. MW • 39 y/o male • Recurrent pneumocystis pneumonia • Chronic chemical dependence (cocaine/EtOH) • Chronic mental illness: psychosis vs schizotypal • Homeless (Salvation Army) • CD4-depleted (CD4 = 3 as of 3/2001) • Multiple recent hospitalizations (recent AMA) • Malnourished • Other • Oral candidiasis • Perianal HSV • Neutropenia, granulocytopenia, anemia • Hepatitis C • Meds: suspect chronic inadherence to ARVs & PCP prophylaxis

24. AW • 39 y/o woman with children • CD4 = 10 • Steady downward course • Multiple hospitalizations • Poor functional status • Chronic inadherence/intolerance to ARVs • November 2001: TTP, malnutrition

25. Z-Factors for AIDS Hospice Rx • CD4-depletionSteady trend toward decline: clinical and laboratory • Multiple recent hospitalizations • Multiple OIs: DMAC, CNS toxo • Malnutrition/wasting • Multiple life-threatening diagnoses • Multiple symptoms usually including chronic pain • Chronically poor functional status • Chronically nonadherent*/intolerant/not on ARVs • Chronic chemical dependence • Poor support system? • CNS lesions? • Refractory oral/esophageal candidiasis • Antiretroviral resistance?

26. The Hospice Rx • Plan session and discuss terminal prognosis with patient including • Designated caretaker and as many family members as possible • Primary Care provider • Social Services • Nursing • PalCare representative ?

27. The Hospice Rx • Emphasize that Hospice • is an “aggressive” form of therapy appropriate with the phase of life that the patient has entered • provides support for the patient, their family & friends both in life and in the bereavement period • caters to the physical, mental & spiritual sides of the patient & their family • is a “prescription” appropriate for this patient like a cast would be for a broken arm, antibiotics for a pneumonia, etc.

28. The Hospice Rx • Designate patient “Do Not Resuscitate” in medical record • A physician decision made in consultation with another MD • Ethical responsibility to inform patient and family • Ask Social Services to initiate contact with Hospice Agency • Designate hospice-care MD for this patient • Order suitable palliative care measures • Standing orders? • Durable medical equipment: hospital bed, bed side commode, wheelchair, etc. • Palliative medications: analgesics, anxiolytics, antidepressants, antiemetics, hypnotics

29. The Hospice Rx: Problems • Avoid “stop-go”: get all providers on the same page • Patient/family refuses hospice • Hope for the best! • Consider enlisting support of patient’s most trusted confidantes • PalCare consult • Consider moderately aggressive care with Advanced Directives specifying “DNR” (if patient improves, collaborate with them on new Advanced Directives) • As downward course continues, attempt hospice Rx repeatedly • Patient goes to hospital while on hospice • Discuss & confirm terminal prognosis with care team • Optimized palliation in house

30. PalCare • Robert Woods Johnson grantee 1998 • Multidisciplinary • Harlee Kutzen: PI, guru, palliative care/pain expert • Carole Pindaro: palliative care provider • Peter Drago: general workhorse, coordination, communication facilitation, mental health provider • Jim Zachary: palliative care provider, hospice coordinator, interest in addiction/pain control, website techie • Designed to bridge the gap between curative therapy and hospice • Proven benefits to patients, providers, and system