1. Hope, Hospice and Palliative Care
August 24, 2016

2. 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

3. 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

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

5. 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

6. (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:

7. 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.”

8. 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.”

9. 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

10. 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

11. 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

12. 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

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

14. 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

15. 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

16. 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

17. 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

18. 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

19. 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

20. 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:

21. 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

22. 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

23. 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

24. 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.

25. 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

26. 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

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

28. 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

29. 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):
Dumanovsky T et al: Growth of PC in US Hospitals. J Pall Medicine 2015; 19(1):8-15

30. 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

31. 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 , decreased 2003
ELNEC, 2004
NHPCO – 75% Hospice have pediatric services
2015 – 30 Pediatric Palliative Care Training Programs - ACGME

32. 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

33. 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

34. 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.

35. “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, OSI project

36. 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

37. 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

38. 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)

39. 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

40. 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

41. 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

42. Bibliography and Resources
Center to Advance Palliative Care
Catalog section: Tools and publications
Ezekial EJ, Ezekial LL, The promise of a good death 1998, 351 (suppl 11):
Morrison RS, et al. The growth of palliative care programs in United States hospitals. J Palliat Med 2005; 8(6):
Gillick MR. Rethinking the central dogma of palliative care. J Palliat Med 2005; 8, no5:
Green J, Gaffney M. End of life care in a public hospital system: the providers’ perspective 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:
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.