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EOL & Hospice Care James A Zachary MD LSU Health Sciences Center HIV Outpatient Clinic December 13, 2004 EOL & Hospice Care.

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Presentation on theme: "EOL & Hospice Care James A Zachary MD LSU Health Sciences Center HIV Outpatient Clinic December 13, 2004 EOL & Hospice Care."— Presentation transcript:

1 EOL & Hospice Care James A Zachary MD LSU Health Sciences Center HIV Outpatient Clinic December 13, 2004 EOL & Hospice Care

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

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

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

6 Hospice Care Many physicians are uncomfortable taking care of dying patients 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 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 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 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 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) 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 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 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 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 patients life! Hospice care picks up where curative therapy ends allowing the provider to feel assured that they have done their best throughout the patients life!

9 Growth of Hospice Care in US Clinics in Office Practice Volume 28 Number 2 June 2001

10 Growth of Hospice Care in US Clinics in Office Practice Volume 28 Number 2 June 2001

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

12 History of Hospice Success of St Christophers opened up the door for hospices to open in Europe and Canada Success of St Christophers 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 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. 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. 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 Designed for 6 months or less length of stay per patient originally Average length of stay: 6 days Average length of stay: 6 days Barriers to hospice referral Barriers to hospice referral Poor knowledge of end-of-life prognostic factors in the appropriate disease process Poor knowledge of end-of-life prognostic factors in the appropriate disease process Academic institutions almost exclusive emphasis on diagnosis and cure Academic institutions almost exclusive emphasis on diagnosis and cure Evolving medical science: (false?) hope for cure Evolving medical science: (false?) hope for cure Unwillingness to provide/accept hospice referral Unwillingness to provide/accept hospice referral Patients: fear of death, fear of pain, cultural concerns Patients: fear of death, fear of pain, cultural concerns Family: loss of family member, loss of monetary support Family: loss of family member, loss of monetary support

14 Hospice Care Providers poor referral rate to hospice Providers poor referral rate to hospice Lack of time Lack of time Lack of experience, or training in establishing and/or discussing prognosis and hospice care Lack of experience, or training in establishing and/or discussing prognosis and hospice care Hard time giving up Hard time giving up Poor understanding of the hospice concept Poor understanding of the hospice concept Unfailing trust in the evolution of medical science 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 Poor knowledge of end-of-life prognostic factors in the appropriate disease process Study the relevant literature, or Study the relevant literature, or Call in consultants with the appropriate prognostic knowledge Call in consultants with the appropriate prognostic knowledge Experience! Experience! Academic institutions emphasis on diagnosis and cure Academic institutions emphasis on diagnosis and cure Develop curricula devoted to end-of-life issues Develop curricula devoted to end-of-life issues Psychological and spiritual issues Psychological and spiritual issues Communication issues Communication issues EOL mentoring by terminally-ill patients & appropriate faculty EOL mentoring by terminally-ill patients & appropriate faculty Encourage specialized End-of-Life care programs Encourage specialized End-of-Life care programs

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

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

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

19 JK 47 y/o male 47 y/o male End stage lung disease/COPD on home O 2 End stage lung disease/COPD on home O 2 CD4 = 15 CD4 = 15 Chronic inadherence (not seen in clinic x 8 mos) Chronic inadherence (not seen in clinic x 8 mos) Other Other Malnourished Malnourished Still smoking Still smoking Very frequent admissions for resp failure Very frequent admissions for resp failure Meds: no ARVs, MDIs, antibiotics Meds: no ARVs, MDIs, antibiotics

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

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

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

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

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

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

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

27 The Hospice Rx Emphasize that Hospice Emphasize that Hospice is an aggressive form of therapy appropriate with the phase of life that the patient has entered 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 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 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. 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 Designate patient Do Not Resuscitate in medical record A physician decision made in consultation with another MD A physician decision made in consultation with another MD Ethical responsibility to inform patient and family Ethical responsibility to inform patient and family Ask Social Services to initiate contact with Hospice Agency Ask Social Services to initiate contact with Hospice Agency Designate hospice-care MD for this patient Designate hospice-care MD for this patient Order suitable palliative care measures Order suitable palliative care measures Standing orders? Standing orders? Durable medical equipment: hospital bed, bed side commode, wheelchair, etc. Durable medical equipment: hospital bed, bed side commode, wheelchair, etc. Palliative medications: analgesics, anxiolytics, antidepressants, antiemetics, hypnotics Palliative medications: analgesics, anxiolytics, antidepressants, antiemetics, hypnotics

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

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

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