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Individuals, agencies, communities and
coalitions are mobilizing to improve end-of-life care in
the United States and globally. Selected examples of
"Best Practice & Research" are presented to inspire and
provide you with models for replication. On this page
you will find information about:
Best Practice,
Research, and
Reports.
If you know of an
innovative program, research or new body of knowledge
send it to Jill Darrington, A Better Way Coalition,  .
What do people in Idaho want for care at the end of life?
Announcing Key Findings
Idaho Statewide End-of-Life Survey
The Idaho survey is one of four statewide surveys asking people to share their thoughts about the end of life. We had an exceptionally high, 39.4%, response rate. 1,181 people completed the 12-page survey, the highest response for similar surveys in the nation. The complete Introduction,
Survey Report, Executive Summary and Focus Briefs on Communicating Wishes, Compassionate Care, Meaning and Spirituality, and Medical Treatment are available for downloading.
Survey conducted by A Better Way Coalition: Life on Our Own Terms and the BSU Center for the Study of Aging
Questions?
Contact:
Jill Darrington
(208) 343-9735
Center for the Study of Aging at Boise State University
Holly Beard, PhD: Director, Assistant Research Professor
1910 University Drive, Boise, ID 83725-1820
Phone: 208-426-5899
Fax: 208-426-5949
HollyBeard@boisestate.edu
Best Practice
Best practices in hospital end-of-life care
November 2002 University of Connecticut Health Center,
Center on Aging, The Connecticut Best Practices in
End-of-Life Care project was initiated in response to
the concern that Connecticut hospitals were not meeting
the needs of dying patients. The records of 420 patients
with a diagnosis of cancer or with an admission to an
intensive-care unit were reviewed for the period
04/01/2000 to 03/31/2001. Utilizing a chart extraction
tool, measures of "best practice" were developed as a
means of assessing the quality of end-of-life care
provided to the patient cohort.
End-of-Life in Canada
End-of-Life care to reach medical school curriculum by
2008 October 2004
Palliative medicine is being introduced
in every medical school in Canada to ensure that every
doctor in the country qualifies with some training in
end-of-life care. By 2008, all medical students and
residents will have received training in end-of-life
care and will have been evaluated on it in their final
exams. All physicians should feel competent to manage
pain control and know how to talk to patients at the end
of life.
Compassionate Leave for Caregivers in Canada available
in 2004
In Canada's federal budget released in
February 2003, a commitment was made to protect jobs and
incomes for caregivers by expanding the employment
insurance program to allow for compassionate leave for
those who must take time off from work to care for a
gravely ill child, parent or spouse. Starting January
2004, the government will provide a new Employment
Insurance Compassionate Family-Care Leave Benefit.
Eligible workers will be entitled to a six-week paid
leave to care for a gravely ill or dying parent, spouse
or child. The benefit can be shared among eligible
family members. For more information, go to the
government link.
Quality End-Of-Life Care: The Right Of Every Canadian,
June 2000, Report addressing the need for a national
strategy including the federal role in quality
end-of-life care.
Palliative Care Kit Contents - Fairview Health Systems
The Fairview team's Plan-Do-Study-Act
cycle aimed to increase patient comfort by reducing
pain, dyspnea, anxiety, and depression by half. Changes
tested include guided imagery exercises and meditation
as an adjunct to pain treatment; imagery and therapeutic
massage to reduce anxiety among families in the
pediatric ICU; and harp music for pain and anxiety among
pediatric patients and their families. Grant money
enabled the team to provide music and massage therapy in
its nursing homes and hospice. In addition, the group
wrote a booklet titled "Journey through the Dying
Process," which Fairview printed and is distributing
system-wide. The group has assembled 13 palliative care
kits that are available on several nursing units. The
kit will be used for many patients. Some of the items
will be given to the patient or family; other items
should remain in the kit to be reused. (Contents of kits
listed in article.)
POLST - Physician Order for Life-Sustaining Treatment
POLST Program Research
Oregon POLST - Physician Order for Life Sustaining
Treatment
The POLST was developed over a four-year
period by a multi-disciplinary task force of the Center
for Ethics in Health Care at Oregon Health & Science
University. In July 1996, the Oregon Board of Medical
Examiners redefined the Scope of Practice for EMTs,
First Responders, and their Supervising Physicians. EMTs/First
Responders are now directed to respect patient wishes
with respect to life-sustaining treatment, and to comply
with life-sustaining treatment orders executed by a
physician, such as those recorded on the POLST document
(OAR 847-35-0030 [7]). Over 1,000,000 POLST forms have
been distributed to date and continue to be targeted for
use for patients who have a higher potential need of
life-sustaining treatment decisions.
Washington State POLST - Physician Orders for Life
Sustaining Treatment
The Washington State Department of Health
(DOH) Office of Emergency Medical Services & Trauma
System (OEMSTS), in conjunction with the Washington
State Medical Association (WSMA), has implemented a new
form, which will allow individuals to summarize their
wishes regarding end-of-life treatment. The form is
available to physicians free of cost from WSMA. The new
Physician Orders for Life Sustaining Treatment (POLST)
form is a “portable” physician order form that describes
the patient’s code directions. It is intended to go with
the patient from one health care setting to another and
represents a way of summarizing wishes of an individual
regarding life-sustaining treatment identified in an
advanced directive, such as a Healthcare Directive or
Durable Power of Attorney for Health Care.
Physician Orders for Scope of Treatment (POST) Form
Under the West Virginia Health Care
Decisions Act, the POST form is a standardized “hot
pink” form containing orders by a physician who has
personally examined a patient regarding that patient’s
preferences for end-of-life care. The form provides
physician orders regarding CPR-code or no-code status;
level of intervention (comfort care, intermediate, or
full treatment); and use or withholding of antibiotics
and feeding tubes. The comfort care level stipulates,
“The patient is not to be hospitalized unless comfort
interventions [in the present setting] fail.” Use of
this form should lead to better identification and
respect of patient’s preferences for treatment at life’s
end.
Additional resources and legislation.
Tennessee End-of-Life Partnership: Hospital Based
Best Practices. Comfort Care Carts, Living Code of
Ethics, Scanned Advance Directives, and The Rose.
Vial of Life
Community University Partnership - Vial of Life
Medication Management Program, The Atlanta Regional
Commission, Area Agency on Aging for the 10-county
Atlanta region, county-based offices of aging, local
firefighters, police officers, churches, hospitals and
others have teamed up with CVS Pharmacy to help older
adults better manage their medications. Through the
“Vial of Life” program, older adults receive a kit to
help them track the medications they are taking and
review their medications with a registered pharmacist.
As part of the program, the University of Georgia has
developed a medication management curriculum that
county-based health educators and pharmacists can offer
through the senior centers.
American Senior Safety Agency, Every person should
have a Vial of Life form filled out. Put one in your
wallet, in your glove compartment, and especially on
your refrigerator door, and one in your child's pocket.
My Precious Kid, Vial of Life puts vital medical
information immediately in the hands of emergency
professionals during an emergency situation in your
home. Program targeted for children and other family
members.
Research
A Special Report: Spiritual Care At the End of Life,
Challenges for Hospital, Hospice, and Congregational
Clergy. Collaborating with hospitals, hospices,
and congregations in the Chicago area, the Park Ridge
Center for the Study of Health, Faith, and Ethics
conducted a two-year qualitative research study to
better understand spiritual care at the end of life and
the clergy's role in meeting the spiritual needs of the
dying. Based on the study, this article reflects on the
meaning of spiritual care at the end of life from the
perspectives of religious leaders and the people they
serve. It explores how members of the clergy can work
together and with others to improve end-of-life care by
defining spirituality, religion, and spiritual care in
the context of end-of-life care. The article also helps
caregivers identify and respond to the spiritual
concerns of a person facing the end of life. It explores
ways to create an environment where the dying patient's
spiritual orientation can flourish. Finally, the article
helps clergy and other caregivers reflect on their sense
of spirituality, especially as it relates to end-of-life
care.
Achieving Outcomes: Best Practices in the Management of
Cancer Pain
Acute and chronic cancer pain is very
common and often undertreated, even though most patients
can be treated effectively with relatively simple
regimens. Despite years of efforts to educate physicians
and other healthcare providers about the need for and
proper administration of cancer pain treatment, there
remain many barriers to effective pain relief.
Caregiving at Life's End - The National
Train-the-Trainer Program Over the years, family
caregivers have taught us that caring for someone at the
end of life is a life-changing experience. Their
caregiving experiences have offered challenges,
surprises, and even opportunities that go beyond the
physical tasks associated with providing care. Our
observations have also taught us that many of these
Caregiving experiences have been very positive in the
midst of one of life's most difficult time. Caregiving
at Life's End: The National Train-the-Trainer Program is
a caregiver-driven training program designed to address
end-of-life issues in a manner that helps caregivers to
find a sense of meaning, purpose, and value in their
experience and helps them support their care receivers
in finding more peaceful life closure. The wisdom of
current and bereaved caregivers has been the inspiration
for creating and sharing new tools for promoting quality
of life for individuals who provide care as well as
those in need of caring.
Outcome Data
Contracts, Covenants and Advance Care Planning: An
Empirical Study of the Moral Obligations of Patient and
Proxy Fins, Maltby, Friedmann, Greene, Norris,
Adelman and Byock, Journal of Pain and Symptom
Management, Vol. 29 No. 1, January 2005, pp. 55-68.
Diversities in Approach to End-of-Life: a view from
Britain of the qualitative literature
Objective: To investigate qualitative
literature on end-of-life issues and
ethnicity/race/diversity, employing qualitative methods
and philosophical concepts. Design: A database of 119
references was compiled using a range of techniques,
including information for aging theory. Qualitative
principles, such as 'snowballing' and 'saturation', were
utilized to gather and consolidate the literature. A
model of 'system and noise' was employed to
include/exclude the uncovered literature in the final
review.
End of Life Care Planning in New Hampshire, A Statewide
Survey
Facts On Dying: Policy-relevant data on
care at the end of life, Brown Center for Gerontology
and Health Care Research.
Improving End-of-Life Care: Why Has It Been So
Difficult? The
Hastings Center report features essays on subjects
ranging from disability rights to public policy,
examining where we have been, and where we have yet to
go. Each essay asks us to consider what we believe to be
true about end-of-life care, to consider what is
actually true, and to envision a different approach to
concerns such as personal autonomy, advance directives,
disability rights, and the legal system.
Incapacitated and Alone: Health Care Decision-Making for
the Unbefriended Elderly,
Key Findings - According to a bioethicist
at a major urban hospital, “The single greatest category
of problems we encounter are those that address the care
of decisionally incapable patients . . . who have no
living relative or friend who can be involved in the
decision-making process. These are the most vulnerable
patients because no one cares deeply if they live or
die.” The American Bar Association Commission on Law and
Aging recently examined decision-making for such
patients in a 2003 report entitled Incapacitated and
Alone: Health Care Decision-Making for the Unbefriended
Elderly. The publication identifies the current state of
law and practice in healthcare decision-making for the
unbefriended elderly and advances workable solutions
that preserve their rights.
Miles Away: The MetLife Study of Long-Distance
Caregiving,
July 2004. Long-distance caregivers live
an average of 450 miles away, spend $392 per month;
almost half rearrange their work schedules and, in order
to provide assistance for an aging loved one,
long-distance caregivers miss an average of 20 hours per
month of work. (News
release)
One Final Gift: Humanizing the End of Life for Women in
America, a new report from the Alliance for Aging
Research, describes what it calls "Seven
Essential Truths," primarily problems, about women
and end-of-life care. Many shortcomings in the current
system are the result of years of focus on men as
research subjects. In a healthcare system centered on
acute medical conditions and oriented to the young and
middle-aged, there is much room for improving care of
elderly women.
Looking After Grandmother (One Final Gift) The twin
goals of achieving continuity and coordination of care
over the life span and attaining the conditions for a
good death demand national dialogue in every country.
The Alliance for Aging Research has recommended the
following steps to achieve these goals:
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More governmental support for
increased research and training…
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Better training for health care and
social service providers in applying the principles…
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New collaborative channels…
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Family caregivers must be given
better preparation, information, and…
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Re-examination of government-funded
health policies so that…
Deep human emotion, values and judgments
surround how we care for the dying. We must therefore
keep in mind the human faces of those we are fighting
for. They are our mothers, sisters, grandmothers, aunts,
and neighbors.
The Caregiving at Life’s End National Needs Assessment,
June 2003, What we’ve learned from
end-of-life caregivers is that the caregiving journey
is not an easy one, but there are opportunities for
finding meaning and purpose along the way. The
difficulty of the journey isn't an obstacle to seeing
the view – to the contrary, it’s the difficulty of the
journey that helps you to appreciate the view in the
first place.
Full Report
How can you use the results in your work
with end-of-life caregivers in your community?
The Minnesota Commission On End Of Life Care Final
Report
In May 2000, our State’s healthcare and
public health communities took an important step forward
in addressing end-of-life care issues with the formation
of the Minnesota Commission on End-of- Life Care. The
work of the Commission has focused on identifying the
important issues and barriers to care, prioritizing
those issues, and making recommendations for
improvement. Recommendations from this report will help
public and private policy-makers formulate improvements
that will ensure all Minnesotans receive the best care
possible at the end of their lives.
The Palliative Care Demonstration Project
The purpose of the MHP Palliative Care
Demonstration Project is to establish a best practice
for implementing a model of providing excellent
end-of-life care within an acute care setting that
focuses on relief of suffering and improvement of
quality of life. This approach borrows heavily on the
excellent work that is being done by hospice. But what
is new is the setting. Acute health care institutions
are not known for their ability to collaborate and
coordinate services for the dying. Although MHP is not
reimbursed for its palliative care service, significant
cost savings are anticipated by alleviating futile
therapies and tests. Equally important, it is hoped that
patients will be admitted to hospice care earlier. As
part of its evaluative component, the project will
monitor its impact on health care outcomes as well as
evaluate our referral to hospice and hospice length of
stay.
Transforming the Culture of Dying, An Open Society
Institute’s Project on Death in America (PDIA) special
report, October 2004. The report reviews nine years and
$45 million devoted to improving care available to
patients and their families at all stages of serious
illness. The report highlights examples of strategic
grantmaking and includes specific funding
recommendations that focus on areas of special
opportunity where philanthropic investment would make a
dramatic difference in the lives of patients and
families. PDIA, which completed all grantmaking at the
end of 2003, issued the report to highlight the enormous
impact of private philanthropy on the development of
palliative and end-of-life care services and to share
with the greater funding community lessons learned over
the decade.
Reports
Choices and Conversations, A Guide to End-of-Life Care
for Rhode Island Families, November 2000
Financing End-of-Life Care: Challenges for an Aging
Population, Academy Health - Advancing Research,
Policy and Practice, February 2003. The report
focuses on the complexity of delivering end-of-life
care, the role of public financing of end-of-life care,
and innovative models of organization and delivery. It
covers everything that decision-makers need to know
about end-of-life care, including who is involved in
end-of-life decisions, when end-of-life care services
should be accessed and what they cost, and why there is
a need to reform current end-of-life policies.
Hospice in Long-Term Care, Guidelines from the
evidence on how to integrate hospice at your facility.
Nursing homes have always provided end-of-life care.
Recently, many efforts have been made to improve
end-of-life care in long-term care, including promoting
the presence of hospice services. The relative merits
and limitations of hospice in long-term care are
discussed.
Improving End-of-Life Experience and Care in the
Community: A Conceptual Framework
End-of-life research and interventions
have mostly focused on patients and family. There are
compelling reasons for studying end-of-life experience
and care from a community perspective. “Whole community”
approaches to end-of-life care have been endorsed by the
Institute of Medicine Committee on Care at End of Life.
Building on the model developed by Stuart and
colleagues, which integrates quality of life and quality
of health indicators, a conceptual framework is
presented that describes pertinent whole-community
characteristics, structures, processes, and outcomes.
The framework offers a map for whole-community research,
intervention, and evaluation with the goal of changing
the community culture related to life’s end and thereby
improving the quality of life for dying people and their
families.
Means to a Better End: A Report on Dying in America
Today, LastActs, November 2002
(Report on Idaho end-of-life care
included.)
Most states do not provide adequate
end-of-life care to patients with terminal illnesses.
Last Acts is a coalition of more than 1,000 healthcare and
advocacy groups. In the report, titled "Means to a
Better End: A Report on Dying in America Today," states
received grades from A to E, with A as the highest
score, in eight categories. The report graded states on
the quality of their end-of-life policy; where their
residents die; their rate of hospice use; end-of-life
care provided in their hospitals; end-of-life care
provided in their ICUs; the persistence of pain among
their nursing home residents; their policy on pain
management; and the number of their physicians and
nurses certified in palliative care. In addition, the
report found more than 70% of U.S. residents would
prefer to die at home, but only about 25% die at home.
According to the report, half of deaths in the United
States occur in hospitals, but most facilities do not
provide adequate end-of-life care. Fewer than 60% of
hospitals nationwide offer specialized end-of-life care,
23% of hospitals offer hospice care, and 42% offer pain
management services.
Public Policy Update
Quality care at the end of life should be recognized
as a global problem for public health and health
systems. Worldwide, 56 million people die each
year, 85% of these in developing countries. Yet little
is known about the quality of care they receive at the
end of their lives. The movement for improving the
quality of care at the end of life is primarily focused
on industrialized countries. Until it is seen as a
global problem for public health and health systems,
efforts to improve it will not make much impact in the
world.
What's A Life Worth? End of Life Care, Religion and
Ethics Newsweekly. Now, a wrenching question about
medical care for the elderly. More and more high
technology can prolong life. But usually for only a
short time, at enormous cost. Should that money be spent
elsewhere? Who should decide?
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