Hope, Hospice and Palliative Care August 24, 2016

Starting Propositions Aging population, increased numbers of persons with chronic illness Acute care, hospital based-expensive, not always best treatment Hospice is excellent but not applicable for many Palliative care model – expanded realm of services, able to bridge, philosophically and physically, the acute care with the terminal hospice care Patients, families, communities benefit

What Makes A Good Death “Free from avoidable distress and suffering for patients, families, and caregivers; In general accord with patients’ and families’ wishes; Reasonably consistent with clinical, cultural and ethical standard.” IOM, Approaching Death: Improving Care at the end of Life. 1997.

What is a Bad Death? Pain Unfinished business Bleeding Spiritual dis-ease Seizures Psychological distress Isolation

Sources of suffering/what we fear Pain Loss of function and independence Loss of integrity: physical, emotional, spiritual Loss of love, separation Loss of rationality Financial ruin Loss of hope

(More) Existential Suffering The loss of meaning or purpose in life What will happen to me after I die Fear of being a burden Intense fear or terror of dying Boston P, Bruce A. Existential Suffering in the Palliative Care Setting: An Integrated Literature Review. Journal of Pain and Symptom Management 2011;41: 604-618.

Dame Cicely Saunders “You matter because you are you. You matter to the last moment of your life and we will do all we can not only to help you die peacefully but to live until you die.”

WHO – 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, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial, and spiritual.”

Palliative Care Focuses on : Quality of life Control of pain and symptoms Attention to psychosocial and spiritual experiences of adapting to chronic and advanced illness Goal: To provide service from time of diagnosis throughout illness Adapts care as patient’s condition changes

Palliative care continuity To the end and beyond Ultimate goal is to follow patients after the hospitalization Home Nursing home Other Bereavement support for the family

Hospice Care Specialized and intensive form of palliative care for patient with advanced life threatening illness and for their families Emphasizes quality of life, life closure issues and the relief of suffering Regulated primarily by Medicare

Financially positive for hospital Better care, decreased readmissions Reasons for Hospitals to provide Palliative Care services, including Hospice Where most people die How most people die Financially positive for hospital Better care, decreased readmissions 5% patients drive 50% of hospital spending 27% of Medicare dollars spent in last year

Location of Death in US Most persons say they want to die at home, BUT: Hospitals: 53% Nursing Homes: 24% Home: 10-15% Other (street, ambulance, etc) (2014)

Hospital P.C. Hospice Palliative care programs may exist as a bridge or they may develop from such a collaboration Palliative care (more easily) respects the reality of changing goals of care Collaboration is mutually beneficial for patient/family, hospital and hospice

Rationales for Collaboration Significant amount of end of life care happens in hospitals Most is focused on aggressive and acute care Hospice is the only national program that provides end of life care; Hospice has strict requirements regarding diagnosis and prognosis

Goals of Collaboration between Hospice and Hospital Expedite and expand access to PC service in order to provide a fully integrated program of care to a diverse group of persons, including those with chronic progressive disease Palliative Care links the two “bookends” Improved patient care

Hospital contributions Expertise, acute care in multiple specialties Marketing Library and information systems support Patients who are dying, or living with chronic, painful or debilitating conditions

Hospice contributions Interdisciplinary approach to clinical care at end of life Experience with advance care planning (advance directives) Bereavement support and link to community resources High patient and family satisfaction ratings

Collaboration is mutually beneficial Hospital: quality indicators and satisfaction ratings increase when Palliative Care services are available Hospice: referrals to hospice rise when palliative care is available in hospital Both: appropriate reimbursement may be improved no palliative care billing code per se (?) but - can bill for many services

Benefits to Patients 2010 study of 151 patients with metastatic non-small cell lung cancer followed for 12 weeks: PC resulted in better quality of life PC – less depressive symptoms PC – less aggressive care at end of life PC – median survival was LONGER (11.6 months vs. 8.9 months, p=0.02) Ternel JS, Greer JA, Muzinkansky A et al. Early Palliative care for Patients with Metastatic non-Small Cell Lung Cancer. NEJM 2010;363:733-742.

Models of Palliative Care Services Hospice – Hospital partnerships Palliative Care in ICU Integrates pain and symptoms management regardless of overall goal of treatment (cure or care) Helps with care coordination and connections Pediatric Palliative Care Long term care facilities: challenge of providing excellent palliative care and maintaining fiscal responsibility

Other Faces of Palliative Care Inpatient consult service Inpatient palliative care unit Hospice Outpatient palliative care clinic Palliative care in nursing home Palliative care in home Primary palliative care may be provided by PCP, medical oncologists, radiation oncologists, others

Community Models of Palliative Care Programs PC Program with shared hospice-hospital resources (e.g. liaison nursing, consultation team) A hospice – based PC program affiliated with 1 or more hospitals A hospital – based PC program affiliated with 1 or more hospice Hospice in Nursing Homes

Roles of Physicians Acknowledge they cannot do it alone Coordinate with palliative medicine providers Coordinate with hospice Coordinate with clergy and social work Facilitate involvement with family members and social network IOM, 1997.

Design for in-patient units Integrated palliative care/hospice unit Dedicated palliative care unit that accepts hospice patients Dedicated hospice unit that accepts palliative care patients

Other issues in hospital-hospice collaborations Financial No palliative care CPT billing code – use E&M (V66.7 – Patient is in end of life care) Hospice codes: Structural, legal and psychological barriers (terminal diagnosis and six month prognosis) Significant cost savings for hospital Less futile care and earlier discharges Legal Medicare hospice benefit code Anti kick-back issues

Growth in Palliative Care Programs in hospitals 148% increase PC teams in hospital - 2010 (67% increase from 2000 – 2003) 17 palliative medicine fellowships in 2000; 53 in 2005 1892 certified palliative medicine physicians in 2005 5500 + nurses specializing in palliative medicine in 2005

Palliative care training May, 2012: 85 programs offering 234 fellowships; Medicare does not give GME funding July 2016: 117 programs About 1 PC physician/1200people living with serious illness (1 cardiologist/71 folks with MI) New board – 2006, 2013

Where are the Palliative Care Programs? December 2014: 1591 PC programs in hospitals Large hospitals, academic medical centers, not for profit (especially Catholic Church)and public hospitals 2014 – 90% of hospitals>300 beds VA hospitals Region of country Morrison, et al :The Growth of Palliative Care Programs in U.S. Hospitals. J Palliative Medicine 2005; 8(6): 1127-1134. Dumanovsky T et al: Growth of PC in US Hospitals. J Pall Medicine 2015; 19(1):8-15

Estimated potential financial impact Use length of stay savings x cost/day savings Estimated number of potential P.C. patients For mature PC programs, referrals capture rate of about 30-40% Annual savings at 20% referrals: $ 556,000 40% referrals: $1,113,421 50% referrals: $1,391,776 Center to Advance Palliative Care, 2005, 2014 Guide to Building a Hospital Based Palliative Care program

Pediatric Palliative Care 53,000 children 0-19 y.o. die each year Infants less than 1 year old account for about half the deaths 75-85% children die in hospital, many in ICUs Palliative Care programs in children’s hospitals increased 2000-2002, decreased 2003 ELNEC, 2004 2007 - NHPCO – 75% Hospice have pediatric services 2015 – 30 Pediatric Palliative Care Training Programs - ACGME

Partnership examples: Hospice of the Bluegrass – Lexington, KY Liaison nursing, palliative care consultation, and/or in-patient hospice Partnered with three acute care hospitals Midwest Palliative and Hospice Care Center (Palliative Care Center and Hospice of the North Shore – Evanston/Skokie) Coordinated continuum, home based p.c., hospice and home care Pediatric palliative care and hospice Multiple connections

Partnership examples Hospice and Palliative Care of Greensboro, NC (HPCG) Community based hospice, collaborate with several hospital health systems; in-hospital hospice and palliative care units 12 bed HIV hospice (?) Children’s treatment and education program System wide palliative care consult service

Partnerships Hospice by the Bay (HBB), SF Independent community hospice Comprehensive care team Based in general medicine outpatient clinic PC and Hospice team approaches to patients with cancer, CHF, COPD; may refer to HBB.

“It takes a lot of sensitivity to take care of a dying patient “It takes a lot of sensitivity to take care of a dying patient. And I believe it can make or break your institution… It matters so much that it’s never forgotten by a family member. Death is a part of life. It’s a part of life that all of us have to enter at some point in time.” Wishard nurse, 1996. OSI project

Wishard/Eskenazi Palliative Care Program Team based, multidisciplinary, palliative care consultation in hospital, nursing homes, home visits, clinic, hospice – 700/year 4 Liaison MDs, RN, Chaplain, Social Worker, fellows Came out of recommendations of OSI project

IU Health Arnett Hospital Palliative Care and Hospice Hospital and Home based Inter-disciplinary - nurses, physicians, social workers, spiritual care providers and others Symptom management, navigation of system, ongoing support

Other Efforts Methodist: Yellow Rose Unit – hospital based hospice unit closed but there are beds on a specific unit Riley: now has 2 Pediatric Palliative Care physicians! UH: Physician part time PC St Vincent: Hospice and palliative care (2 physicians)

Union Hospital Hospice of the Wabash Valley; Dr. Koshy Oommen, medical director Hux Cancer Center – Palliative care, outpatient, multiple services Camp Bluebird – Adult Cancer Camp

Why is it hard to provide excellent comprehensive care for seriously or terminally ill persons? Fears, inexperience, and lack of education of providers Social denial of death Patients’ fears of death Financial and legal constraints Insufficient trained providers Still a lot to do

Concluding thoughts Aging population, increased numbers of persons with chronic illness Acute care, hospital based- expensive, not always best treatment Hospice is excellent but not applicable for many Palliative care model – expanded realm of services, able to bridge, philosophically and physically, the acute care with the terminal hospice care Patients, families, communities benefit

Bibliography and Resources Center to Advance Palliative Care www.capc.org Catalog section: Tools and publications Ezekial EJ, Ezekial LL, The promise of a good death 1998, 351 (suppl 11): 21-29 Morrison RS, et al. The growth of palliative care programs in United States hospitals. J Palliat Med 2005; 8(6): 1127-1134 Gillick MR. Rethinking the central dogma of palliative care. J Palliat Med 2005; 8, no5: 909-913. Green J, Gaffney M. End of life care in a public hospital system: the providers’ perspective. 1997 unpublished Institute of Medicine. Approaching death: improving care at the end of life. Washington, DC: National Academy Press, 1997. Parrish, JA An Unquiet death. JAMA 2006; 296, no21: 2531-32. End of Life Nursing Education Consortium (ELNEC), module 1; 2004. Dumanovsky T, et al. Growth of Palliative Care in US Hospitals: Status Report. JPM 2015; 19(1):8-15.