Palliative Care: It’s About How You Live R. Morgan Bain, M.D. Medical Director, WFUBMC Palliative...

Palliative Care: It’s About How You LiveR. Morgan Bain, M.D.

Medical Director, WFUBMC Palliative Care Program

March 15, 2011

Wake Forest University Baptist Medical Center

Learning Objectives

1. Describe the history and growth of Palliative Care

2. Define Palliative Care, including the similarities and differences with Hospice Care

3. Identify clinical triggers for palliative care assessment


What’s the Problem?

Why is this important to know?


End of Life in America

• The end of a person’s life can be one of the most important times in that life

• Some die easily and comfortably

• Others die with a great deal of suffering and distress

• Neither our society nor modern medicine has valued end-of-life care, or trained health care professionals to be competent or confident in it


History Lessons: How Americans Died in the Past…• Early 1900s

• Average life expectancy ~ 50 years

• Childhood mortality high

• Adults lived into their 60s

• Prior to antibiotics, people died quickly

• Infectious disease

• Accidents

• Medicine focused on comfort and caring!

• Sick cared for at home


Medicine’s shift in focus…

• Science, technology, communication

• Marked shift in values, focus of North American society

• “death denying”

• Value productivity, youth, independence

• Devalue age, family, interdependent caring


Medicine’s shift in focus…

• Potential of medical therapies

• “fight aggressively against illness, death”

• Prolong life at all cost

• Improved sanitation, public health, antibiotics, other new therapies

• Increasing life expectancy (now 77.9 yrs)

• Death “the enemy”

• Sense of failure if the patient not saved


End of Life in America today

• Modern healthcare

• Relatively few cures

• Live much longer with chronic illness

• Dying process also prolonged


Symptoms, suffering…

• Fears, fantasy, worry• Driven by experience

• Media dramatization

• Multiple physical symptoms• Inpatients with cancer averaged 13.5 symptoms,

outpatients 9.7

• Greater prevalence with AIDS

• Related to

• Primary illness

• Adverse effects of medications, therapy

• Intercurrent illness


Symptoms, suffering…

• Multiple physical symptoms

• Many previously little examined

• Pain, nausea/vomiting, constipation, breathlessness

• Weight loss, weakness/fatigue, loss of function

• Psychological distress

• Anxiety, depression, worry, fear, sadness, hopelessness, etc.

• 40% worry about “being a burden”


Place of death…

• 90% of respondents to WHO Gallup survey want to die at home

• Death in institutions

1949 – 50% deaths

1958 – 61%

1980 to present – 74%


Site of Death

Hospitals: 56%Nursing homes: 19%Home: 21%Other: 4%

(1998 National Mortality Followback Survey)


Place of death…

• Majority of institutional deaths could be cared for at home

• Death is the expected outcome

• Generalized lack of familiarity with dying process, death


Leading Causes of Death- 2004

1. Diseases of the heart 27.2%

2. Malignant neoplasms 23.1%

3. Cerebrovascular diseases 6.3%

4. Chronic lower respiratory diseases 5.1%

5. Accidents 4.7%

6. Diabetes mellitus 3.1%

7. Alzheimer’s disease 2.8%

8. Influenza and pneumonia 2.5%

9. Nephritis, nephrotic syndrome and nephrosis

10. Septicemia

http://www.cdc.gov/nchs/data/nvsr/nvsr56/nvsr56_05.pdf


Prognosis

Lorenz, K. A. et. al. Ann Intern Med 2008;148:147-159


Better Care Needed From the Day of Diagnosis of Any Serious Illness• People need better care throughout the multi-year

course of advanced illness.

• Medicare Hospice Benefit developed to care for the dying: payment regulations require 6 month prognosis and decision to forego insurance coverage for life prolonging care.

• Additional approaches are needed for much larger numbers of persons with chronic, progressive illness, years to live, continued benefit from disease modifying therapy, and obvious palliative care needs.


The Nature of Suffering and the Goals of MedicineThe relief of suffering and the cure of disease must

be seen as twin obligations of a medical profession that is truly dedicated to the care of the sick. Physicians’ failure to understand the nature of suffering can result in medical intervention that (though technically adequate) not only fails to relieve suffering but becomes a source of suffering itself.

Cassell, Eric NEJM 1982;306:639-45.


Barriers to End-of-Life care

• Lack of acknowledgment of importance

• Introduced late, funding inadequate

• Fear of addiction, exaggerated risk of adverse effects

• Restrictive legislation

• Discomfort communicating “bad” news, prognosis

• Lack of skill negotiating goals of care, treatment priorities

• Futile therapy


Palliative Care Defined

• Palliative care is the medical specialty focused on improving the quality of life of people facing serious illness.

• Emphasis is placed on pain and symptom management, communication and care coordination.

• Palliative care is appropriate from the time of diagnosis and can be provided along with curative treatment.

Conceptual Shift

Hospice

CareLife Prolonging Care Old

Palliative Care

Bereavement

Hospice Care

Life Prolonging

CareNew

Diagnosis Death

Bereavement


Hospice

“Hospice programs provide palliative care to terminally

ill patients and supportive services to their families and

significant others, 24 hours a day, 7 days a week, in both

home- and facility-based settings. Physical, social,

spiritual, and emotional care is provided during last stages of illness, during the dying process, and during bereavement by a medically directed interdisciplinary team consisting of patients/families, professionals, and volunteers.”

-National Hospice Organization


What Is Hospice?

• A reimbursement benefit for patients who have a limited prognosis or life expectancy

• Primarily community-based

• Care for severely ill patients and their families

• Team of professionals and trained volunteers

• Focus is on care, not cure.

• Goals:

Relief of pain and other symptoms

Psycho-social support

Comparing Hospice vs. Palliative Care

Hospice

• Prognosis of 6 months or less

• Focus on comfort care

• Medicare hospice benefit

• Volunteers integral and required aspect of the program

Palliative Care

• Any time during illness

• May be combined with curative care

• Independent of payer

• Health care professionals

BEGINNINGS

Dame Cicely Saunders,

(6/22/18 – 7/14/05)

• Founder of modern Hospice movement

• Introduced effective pain management

• Largely responsible for establishing the discipline and the culture of Palliative Care


Palliative Care Timeline• 1967- St. Christopher’s Hospice founded in London

• 1980’s World Health Organization advocates for pain and symptom management

• 1988- Academy of Hospice Physicians, later AAHPM

• 1994- Project on Death in America

• 1995- SUPPORT trial published

• 1996- American Board of Hospice and Palliative Medicine

• 1999- Educating Physicians on End-of-Life Care (EPEC)

• 2003- Center for Advancing Palliative Care (CAPC) introduces Palliative Care Leadership Centers

• September 2006- American Board of Medical Specialties certifies Palliative Care


Hospital-based palliative care: Rapid growth

Number of U.S. hospitals: ~ 70001999: 337 hospital based palliative care programs

in the U.S. (AHA annual survey and Pan et al + Billings et al JPM 2001;4:315.)

2003: >1089 hospital based palliative care programs in the U.S. (AHA annual survey), 300% increase

Center to Advance PCRWJF initiative at Mt. Sinai

Particularly at Academic Medical CentersThe “educational imperative”

Growth of Patients Enrolled In Hospice

>40% of Deaths>40% of Deaths

Growth of Non-Hospice Palliative Care Programs

Goldsmith et al, J Palliat Med, 2008, AHA Annual Hospital Survey, 2009

>50% of All Hospitals

>75% of All Hospitals

with >300 Beds

Source: Center to Advance Palliative Care, January 2011

2000 2001 2002 2003 2004 2005 2006 2007 2008 2009500

600

700

800

900

1000

1100

1200

1300

1400

1500

1600

Growth of Non-Hospice Palliative Care Programs

2000-2009

Nu

mb

er

of

Hosp

itals

wit

h P

allia

tive C

are

Pro

gra

ms

Growth of Palliative Medicine Physicians (AAHPM Membership)

2102

2382

2933

33083612

39284000

0

500

1000

1500

2000

2500

3000

3500

4000

4500

2004 2005 2006 2007 2008 2009 2010

ProjectedActual

Hospice and Palliative Nurses Association (HPNA) Membership Growth

0

2000

4000

6000

8000

10000

12000

2004 2005 2006 2007 2008 2009 2010

6848

7430 76928633 8328

91019800

ProjectedActual

Growth of Annual AAHPM/HPNA Meeting Attendance

HPNA

PreliminaryActual

A Decade Later:Palliative Care 2011 Dramatic increase in the number of clinical palliative

care and hospice programs Increasing public and professional awareness of

palliative care Recognition of palliative care as a distinct medical and

nursing specialty Enhanced professional training and educational efforts

in palliative care Increasing research evidence of the benefit of

palliative and hospice care Major quality and policy initiatives: National Quality

Forum, CMS

Delivery of Palliative Care

• Hospital-Based -Primary care

-Consultation

-In-Patient Unit

• Nursing Home

• Hospice -Home Hospice

-Hospital In-Patient

-Hospice In-Patient


Domains of Palliative Care

• Whole patient assessment

• Communication of bad news

• Goals of care, treatment priorities

• Advance care planning

• Symptom management

• Sudden critical illness



• Medical futility

• Physician assisted suicide/euthanasia

• Withholding or withdrawing life sustaining therapy

• Care in the last hours of life, bereavement support



• Legal issues

• Models of end-of-life care

• Goals for change, barriers to improving end-of-life care

• Interdisciplinary teamwork

Target Population for Palliative CareDistribution of Total Medicare Beneficiaries and Spending, 2005

10%

63%

37%

90%

Total Number of FFS Beneficiaries: 37.5 million

Total Medicare Spending: $265 billion

Average per capita Medicare spending (FFS only): $7,064

Average per capita Medicare spending among

top 10% (FFS only): $44,220

NOTE: FFS is fee-for-service. Includes noninstitutionalized and institutionalized Medicare fee-for-service beneficiaries, excluding Medicare managed care enrollees. SOURCE: Kaiser Family Foundation analysis of the CMS Medicare Current Beneficiary Survey Cost & Use file, 2005.


Capturing a larger audience


Admission Assessment


WFUBMC ICU Triggers for PC

• Age > 80

• Metastatic or locally advanced cancer

• Nursing home admission

• Chronic renal failure on outpatient HD

• Repeat admission, same hospitalization

• Repeat admission within 30 days

• 3rd admission within 90 days

• Any other condition where you would “not be surprised” if patient died within 6 months


WFUBMC PC in the ICU

• Make PC a regular part of ICU team (Tues. AM mtgs.)

• Screen all patients

• Review patients that meet screen

• Discuss with team

• Determine level of involvement with ICU team

• Just Coordinator

• On to full consult with PC Physician

• No PC involvement

• Arrange/participate in Family Conference


What does our PC Coordinator do in the MICU?

• Meet with Attending or Fellow for daily updates

• Circulate during visiting hours

• “Here to be sure we’re doing the things they’d want, and not…”

• Ask about Advance Directives (often the first to ask)

• Participate in/arrange family conference

• Staff support – difficult cases and withdrawals

• Resource for symptom management

Clarity and Consistency of Language

Palliative care is about matching treatment to (achievable) patient goals, whatever they may be.


Resources

1. Center to Advance Palliative Care, www.capc.org

2. National Hospice and Palliative Care Organization, www.nhpco.org

3. American Academy of Hospice and Palliative Medicine, www.aahpm.org

4. Hospice and Palliative Nurses Association, www.hpna.org

5. National Association of Social Workers (CHP-SW, ACHP-SW), http://www.naswdc.org/credentials/credentials/chpsw.asp

http://www.capc.org/

http://www.nhpco.org/

http://www.aahpm.org/

http://www.hpna.org/

http://www.naswdc.org/credentials/credentials/chpsw.asp

http://www.naswdc.org/credentials/credentials/chpsw.asp

Palliative Care: It’s About How You Live R. Morgan Bain, M.D. Medical Director, WFUBMC Palliative...

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