Transcript Caring for Patients as They Die

Dying in America
A Generation’s Crisis and Opportunity
Ira R. Byock, MD
Director of Palliative Medicine
Dartmouth-Hitchcock Medical Center
August 17, 2005
Reasonable Expectations
• Routine assessment and competent
treatment of pain & physical distress
• Clear, complete & honest communication
• Respect for people’s stated preferences
• Coordination of care
• Crisis prevention and management
• Safe & prudent staffing ratios for
nurses and CNAs
• Support for family caregivers
• Support for families in grief
Awash in Information,
Patients Face a Lonely, Uncertain Road
Jan Hoffman
New York Times, August 14, 2005
Photo: Nicole Bengiveno
Institute of Medicine
Dimensions and Deficiencies
I. Too many people suffer needlessly at the end
of life, both from errors of omission and
from errors in commission
II. Legal, organizational, and economic
obstacles conspire to obstruct reliably
excellent care at the end of life.
Approaching Death Nat’l Academy Press, 1997
Institute of Medicine
Dimensions and Deficiencies
III. The education and training of physicians
and other health care professionals fail
to provide them the attitudes,
knowledge, and skills required to care
well for the dying patient.
IV. Current knowledge and understanding are
insufficient to guide and support the
consistent practice of evidence-based
medicine at the end of life.
Approaching Death Nat’l Academy Press, 1997
Will We Ever Arrive At the Good Death?
Robin Marantz Henig
New York Times Magazine, August 7, 2005
Photo: Nicholas Nixon
These may be the
“Good Old Days”
The Graying of America
Changing U.S. Age Distribution
Indicates the Baby-Boom Group
1980
10
5
0
1990
5
10
2000
80
80
70
70
60
60
50
50
40
40
30
30
20
20
10
10
10
5
0
5
10
10
5
0
5
10
Millions of Persons
SOURCE: AMARA et. al., Looking Ahead at American Health Care (1988)
The Shrinking Pool of Caregivers
1990
11 to 1
2010
10 to 1
2030
6 to 1
2050
4 to 1
www.dyingwell.org
USA Today December 13, 2000
Where We Die
“Nearly half of Americans
who live to 65 years of age
will enter a nursing home
before they die.”
Zerzan J, Stearns S, Hanson L
Access to Palliative Care and Hospice in Nursing Homes
JAMA 2000 Nov 15, 284(19) 2489-2494
The Washington Post Magazine
June 9, 2002
“More than 90 percent of the nation's
nursing homes have too few workers to
take proper care of patients, a new
federal study has found.”
9 of 10 Nursing Homes Lack Adequate Staff, Study Finds
by Robert Pear, New York Times February 18, 2002 A1
Deidre Scherer
collection
The Coming Crisis in Nursing
2.7 Millions
2.6
2.5
2.4
2.3
2.2
2.1
2
1.9
2000
2005
2010
FTE RN Requirements
2015
FTE RN Supply
Source: Projections by Division of Nursing BHPr, HRSA, USDHHS, 1996
2020
USA Today
Nursing homes and public opinion
“Eighty-three percent of elderly Americans
would stay in their homes until the end if they
could. Thirty percent say they’d rather die than
go into a nursing home.”
CBS News
February 27, 2001
This is one crisis
we can solve!!!
Deidre Scherer
collection
…and we are already spending
enough money
Robert Pope collection
Hospice and Palliative Care
Palliative
Care
Hospice
Care
Palliative Care
Interdisciplinary care
for persons with lifethreatening illness or
injury which addresses
physical, emotional,
social and spiritual
needs and seeks to
improve quality of life
for the ill person and
his or her family.
Program
Coord. Hospice
Medical
RNs
Director
Volunteer
Coordinator
Pharmacist
Resp.
Therapy
Pastoral
Care
Patient
&
Family
Dietician
Hospital
Nursing
Hospital
SW-Discharge
Planner
Social
Worker
www.dyingwell.org
Sequential Model
“Curative” followed by “Palliative” Care
Curative
&
Life-Prolonging
Treatment
Hospice
Medicare
Hospice Benefit
Diagnosis
6 month prognosis
Concurrent Care
“Curative” or
Disease-modifying Treatment
Diagnosis
Palliative Care
Death
Promoting Excellence
in End-of-Life Care
A national program of The Robert Wood Johnson Foundation
Children’s
Hospital and
Regional
Medical Center
UC Davis,
Cancer
Center
Univ of Chicago
Medical Center
Promoting
Excellence in
End-of-Life
Care
University of Henry Ford
DartmouthMichigan
Health
Hitchcock Norris
Cancer Center
System
Cotton Cancer
Case
Center
Western
Reserve
Univ.
Baystate
Medical
Center
Mount Sinai
School of
Medicine
VNA. &
Hospice of
No. Calif
U. PA.
School of
Nursing
UC San
Francisco
Department of
Veterans
Affairs; West
Los Angeles
Medical
Center
Mass.
Mental
Health
Volunteers
of America
Hospice of the
Valley
U. New Mex,
Bristol Bay Area
Health Corporation
Cardinal
Glennon
Children’s
Hospital
Medical
U. of So.
Carolina
Louisiana
State
University
Medical
Center
Cooper
Green
Medical
Center
Typical Services of Palliative Care
 An interdisciplinary team
 24/7 availability
 Ongoing communication
 Advanced care planning
 Formal symptom assessment & treatment
 Crisis prevention & early crisis management
 Care coordination
 Spiritual care
 Anticipatory guidance
 Bereavement support
Promoting Excellence
in End-of-Life Care
It is possible to
• Expand Access
• Improve Quality
• Control Costs
Access
Quality
Costs
www.PromotingExcellence.org
Promoting Excellence
Monographs
www.PromotingExcellence.org
Promoting Excellence Monographs
www.PromotingExcellence.org
Goals of Palliative Care
Alleviation of symptoms and suffering are
our first priorities…
Goals of Palliative Care
… but they are not the ultimate goals.
Bill Bartholome
Bill Bartholome
Preserving Opportunity
• Communicating
• Completing affairs & relationships
• Resolving relationships
• Grieving
• Reviewing life, exploring meaning & purpose
• Exploring spiritual & transcendent realms
www.dyingwell.org
Completing Relationships
Saying “The Four Things That Matter Most”
“Please forgive me”
“I forgive you”
“Thank you”
“I love you”
www.dyingwell.org
Dying Well – Family Perspective
 Ensuring the “best care possible”
 Feeling that preferences were followed
 Knowing the person was treated in a
dignified manner
 A chance to say and do the things
“that matter most”
 Honoring and celebrating the person in
his/her passing
 A chance to grieve together
www.dyingwell.org
Public policies can’t do everything,
but they can…
• Ensure adequate staffing and living wages for
aide-level workers in long term care
• Insist on adequate training of physicians,
nurses & clinicians society employs and
relies on
• Encourage innovation in health service delivery
promoting a continuum of care
• Decrease barriers to effective pain management
Public policies can’t do everything,
but they can…
• Eliminate the arbitrary distinction between
“curative” and palliative care
• Insist on accurate accounting of costs
• Empower consumer and citizen expectations
• Encourage community-based responses
• Foster cultural maturation of a healthy
conclusion to life
More information available at
www.PromotingExcellence.org
www.DyingWell.org
www.ChoicesBank.org
www.Lifes-End.org