Hospice and Palliative Care: An Overview Patrick J. Macmillan, MD, FACP Division of Palliative Medicine Department of Internal Medicine East Tennessee State University James H. Quillen College of Medicine

Introduction What is Palliative and Hospice Medicine? What is Palliative and Hospice Medicine? Disease that are most frequently seen Disease that are most frequently seen Hospice guidelines Hospice guidelines Evidence for Palliative and Hospice Care Evidence for Palliative and Hospice Care Resources Resources

Philosophy Emphasize advanced planning and ongoing care and support rather than crisis intervention Emphasize advanced planning and ongoing care and support rather than crisis intervention Promotion of psychosocial and spiritual growth and development Promotion of psychosocial and spiritual growth and development No specific therapy is excluded—treatment is based, however, on meeting treatment goals rather than effect on underlying disease No specific therapy is excluded—treatment is based, however, on meeting treatment goals rather than effect on underlying disease Radiation, chemotherapy, surgery are NOT excluded in palliative or hospice care Radiation, chemotherapy, surgery are NOT excluded in palliative or hospice care

History: Western Civilization Earliest recorded hospice 475 in Rome Earliest recorded hospice 475 in Rome Middle Ages: Christian religious orders in Europe Middle Ages: Christian religious orders in Europe Modern hospice movement: Irish sisters of charity 1879 Modern hospice movement: Irish sisters of charity 1879 St. Christopher’s Hospice 1967 in London remains one of the preeminent hospice programs in the world St. Christopher’s Hospice 1967 in London remains one of the preeminent hospice programs in the world First hospice program in US opened in 1974 in New Haven, CT First hospice program in US opened in 1974 in New Haven, CT ,000 patients were served by 2,700 hospice programs ,000 patients were served by 2,700 hospice programs

Alternatives

Quality of Life

Medical Ethics

Palliative Care Medical Care for people with serious illnesses—focuses on relief from symptoms and suffering Medical Care for people with serious illnesses—focuses on relief from symptoms and suffering Palliative medicine is the study and management of patients with active, progressive, far advanced disease for whom the prognosis is limited and the focus of care is quality of life. Palliative medicine is the study and management of patients with active, progressive, far advanced disease for whom the prognosis is limited and the focus of care is quality of life. WHO: “active total care of patients whose disease are NOT responsive to curative treatments.” WHO: “active total care of patients whose disease are NOT responsive to curative treatments.” Is Palliative Care the same as Hospice? Is Palliative Care the same as Hospice?

Palliative Care NO—Hospice is a “focus” of Palliative Care targeted at the terminally ill NO—Hospice is a “focus” of Palliative Care targeted at the terminally ill Goals: Improve quality of life for family and patient Goals: Improve quality of life for family and patient Give patient a voice in Tx Plan Give patient a voice in Tx Plan Appropriate at any stage of serious illness Appropriate at any stage of serious illness

Palliative Care “Patient and Family centered care that optimizes quality of life by anticipating, preventing and treating suffering. “Patient and Family centered care that optimizes quality of life by anticipating, preventing and treating suffering. A continuum of treatment that focuses on all aspects of a person A continuum of treatment that focuses on all aspects of a person NQF National Framework and Preferred Practices for Palliative and Hospice Care

Palliative Care Referral: complications, uncontrolled symptoms, multiple comorbidities, and patient or family distress Referral: complications, uncontrolled symptoms, multiple comorbidities, and patient or family distress Assistance needed for complicated decision-making Assistance needed for complicated decision-making

Palliative Medicine Lancet September 2010; Double-blind, randomized controlled trial Lancet September 2010; Double-blind, randomized controlled trial Study comparing Palliative O2 vs. Intranasal room air Study comparing Palliative O2 vs. Intranasal room air 239 patients, life-limiting illness, refractory dyspnea and PaO2> patients, life-limiting illness, refractory dyspnea and PaO2>55 Each group received either O2 or room air at 2L/min NC Each group received either O2 or room air at 2L/min NC Conclusion: No significant difference in rating of dyspnea; air movement across the face (hand held fan) helps relieve dyspnea Conclusion: No significant difference in rating of dyspnea; air movement across the face (hand held fan) helps relieve dyspnea Oxygen is costly and risky for some patients Oxygen is costly and risky for some patients Simple interventions can be used in case where there is NOT true hypoxia Simple interventions can be used in case where there is NOT true hypoxia

Hospice Care Hospice Care: 6 months or less to live IF disease runs its natural course. (Also need family consent) Hospice Care: 6 months or less to live IF disease runs its natural course. (Also need family consent)

Hospice Care Cancer, COPD, Heart disease, ESRD, ESLD, Dementia, CVA, AFTT, Debility, AIDS Cancer, COPD, Heart disease, ESRD, ESLD, Dementia, CVA, AFTT, Debility, AIDS NHO (National Hospice Organization) medical guidelines NHO (National Hospice Organization) medical guidelines Cancer: Cancer plus metastasis (clinical findings) with widespread aggressive and progressive disease Cancer: Cancer plus metastasis (clinical findings) with widespread aggressive and progressive disease PPS score of < 70% PPS score of < 70% Patient refusing further Tx Patient refusing further Tx

Hospice Care COPD: Severe and progressive lung disease COPD: Severe and progressive lung disease FEV1<30% predicted FEV1<30% predicted ER visits or hospitalization for lung infections ER visits or hospitalization for lung infections Hypoxemia at rest (o2 sat<88%) Hypoxemia at rest (o2 sat<88%) Hypercapnea (Pco2 >50 mm Hg) Hypercapnea (Pco2 >50 mm Hg) Best indicator is FEV1 Best indicator is FEV1

Hospice Care Heart Failure Heart Failure New York Heart Association Class IV (Sxs at rest) New York Heart Association Class IV (Sxs at rest) Optimal Tx Optimal Tx Other: refractory arrhythmias, hx of cardiac arrest, syncope Other: refractory arrhythmias, hx of cardiac arrest, syncope Can be on transplant list Can be on transplant list

Hospice Care Dementia Dementia Severe Dementia and 1 st occurrence of medical complications Severe Dementia and 1 st occurrence of medical complications Severity: unable to ambulate independently, no meaningful conversation, urinary/fecal incontinence, unable to dress/bathe independently. “total care” Severity: unable to ambulate independently, no meaningful conversation, urinary/fecal incontinence, unable to dress/bathe independently. “total care” Medical complications: UTI’s, aspiration PNA, wt loss, etc. Medical complications: UTI’s, aspiration PNA, wt loss, etc. Documentation of rapid decline Documentation of rapid decline

Hospice Care HIV Disease HIV Disease CD4 count<25 CD4 count<25 Viral Load >100K copies/mL Viral Load >100K copies/mL Decreased functional status Decreased functional status Other: CNS Lymphoma, PML, wasting, MAC bacteremia, refractory Toxoplasmosis Other: CNS Lymphoma, PML, wasting, MAC bacteremia, refractory Toxoplasmosis Note: 80% HIV patients alive 10 years after seroconversion Note: 80% HIV patients alive 10 years after seroconversion

Hospice Care End-stage liver disease End-stage liver disease INR>1.5 and Albumin 1.5 and Albumin <2.5 gm/dl Clinical syndromes: Ascites in spite of diuretics, SBP, Hepatorenal syndrome, Hepatoencephalopathy despite lactulose Clinical syndromes: Ascites in spite of diuretics, SBP, Hepatorenal syndrome, Hepatoencephalopathy despite lactulose Recurrent variceal bleed Recurrent variceal bleed Other: active etoh abuse, Hep B, CA, malnutrition Other: active etoh abuse, Hep B, CA, malnutrition Note: Patients can be on hospice pending liver transplants Note: Patients can be on hospice pending liver transplants

Hospice Care End-stage renal disease End-stage renal disease No dialysis No dialysis Lab criteria: creatinine >8.0 and clearance 8.0 and clearance <10 Others: CVA, coma, ALS, MS, Parkinson’s disease, AFTT, debility Others: CVA, coma, ALS, MS, Parkinson’s disease, AFTT, debility

Hospice/Palliative Care 90% of Americans die after living with a chronic, progressive incurable illness 90% of Americans die after living with a chronic, progressive incurable illness 1/3 of healthcare costs occur in last year of life 1/3 of healthcare costs occur in last year of life Duke University Study (2007): hospice saves Medicare an average of more than $2,300 for each hospice beneficiary Duke University Study (2007): hospice saves Medicare an average of more than $2,300 for each hospice beneficiary Reduction in Medicare costs if hospice recipients been on for a longer period Reduction in Medicare costs if hospice recipients been on for a longer period Hospice patients lived an average of 29 days longer than those not referred to hospice Hospice patients lived an average of 29 days longer than those not referred to hospice

Hospice/Palliative Care Study: 228 ambulatory patients with newly diagnosed non- small cell lung cancer Study: 228 ambulatory patients with newly diagnosed non- small cell lung cancer Standard oncologic care vs. palliative care Standard oncologic care vs. palliative care Palliative care group survived longer (11.6 months vs. 8.9 months) Palliative care group survived longer (11.6 months vs. 8.9 months) Analysis (included age and performance status) showed early palliative care was an independent predictor of survival Analysis (included age and performance status) showed early palliative care was an independent predictor of survival Subgroup (107 patients in both groups) survived to 12 weeks— PC group reported better quality of life Subgroup (107 patients in both groups) survived to 12 weeks— PC group reported better quality of life

Hospice/Palliative Care Palliative care group received less chemo Palliative care group received less chemo Made fewer ER visits Made fewer ER visits More likely to die at home More likely to die at home

Resource Use in the Last 6 Months of Life Among Medicare Beneficiaries With Heart Failure, Archives of Internal Medicine: Retrospective cohort study: February 14, 2011 Archives of Internal Medicine: Retrospective cohort study: February 14, 2011 US patients, 200,000 Medicare beneficiaries who died in US patients, 200,000 Medicare beneficiaries who died in Use of hospice increased from 19% to 40% over the course of the study Use of hospice increased from 19% to 40% over the course of the study Average number of days in ICU increased Average number of days in ICU increased 80% of patients were hospitalized in last 6 months of life 80% of patients were hospitalized in last 6 months of life

Hospice/Palliative Care Assessed length of patients stay in hospice Assessed length of patients stay in hospice 19% stayed < 3 days, 37% < 1 week 19% stayed < 3 days, 37% < 1 week

Hospice Use and High-Intensity Care in Men Dying of Prostate Cancer Archives of Internal Medicine: Retrospective cohort study 2011 Archives of Internal Medicine: Retrospective cohort study 2011 Hospice use among men dying of Prostate CA between Hospice use among men dying of Prostate CA between % used hospice—22% of this group enrolled in hospice < 1 week 53% used hospice—22% of this group enrolled in hospice < 1 week Conclusion: “short stays [in hospice] don’t allow patients to receive full benefits of enrollment in hospice.” Conclusion: “short stays [in hospice] don’t allow patients to receive full benefits of enrollment in hospice.”

Hospice/Palliative Care Study did find an increase in use of hospice care over time Study did find an increase in use of hospice care over time Hospice patients less likely to receive high-intensity care Hospice patients less likely to receive high-intensity care Conclusion: “Increasing the appropriate use of hospice care for patients at end of life could both improve quality of death and reduce ineffective health care expenditures.” Conclusion: “Increasing the appropriate use of hospice care for patients at end of life could both improve quality of death and reduce ineffective health care expenditures.”

Hospice/Palliative Care Late referrals are due partly to physicians attitudes about death Late referrals are due partly to physicians attitudes about death May view patients death as a medical or personal failure May view patients death as a medical or personal failure May feel they have nothing else to offer when curative goals are exhausted May feel they have nothing else to offer when curative goals are exhausted Distance themselves from patients and families because uncomfortable talking about death Distance themselves from patients and families because uncomfortable talking about death

Hospice/Palliative Care Prognosis-related issues also problematic Prognosis-related issues also problematic Accurately predicting prognosis is difficult (particularly non-cancer diagnosis) Accurately predicting prognosis is difficult (particularly non-cancer diagnosis) Best Prognosticators: length of practice, subspecialists Best Prognosticators: length of practice, subspecialists If you have known the patient a long time---less accurate If you have known the patient a long time---less accurate

Hospice/Palliative Care The Good News The Good News Changes in attitudes regarding advanced diseases and improving quality of life Changes in attitudes regarding advanced diseases and improving quality of life More acceptance of Palliative care concept More acceptance of Palliative care concept Access to palliative care improving Access to palliative care improving Curriculum changes in medical school Curriculum changes in medical school