To:
Hon. Charles Rangel, Chair, House Ways and Means Committee
From:
Claire H. Altman, Director of Capital Projects, HealthCare
Chaplaincy
Re:
Proposal to Develop a National Strategy for End-of-Life Care
That Reduces Cost and Increases Quality of Care
Date: April
16, 2009
Summary
The United States health care system is poorly organized to address
end-of-life care. This brief will make the case for a new national strategy to
reduce cost and increase quality of care. End-of-life care is one of several
major areas in health care where the status quo both raises costs to the
system and decreases consumer service and satisfaction. Patients,
families, and staff often agree the patient is best served by less aggressive
medical intervention, but inertia, lack of education, and reimbursement
structures in the system push powerfully for continued treatment. An urgent
need exists for a coordinated, system-wide approach to providing end-of-life
care that focuses on quality of care for individuals and their families while
avoiding extraordinary costs – often for unwanted and unnecessary
interventions. The United Kingdom issued a “Strategy for End-of-Life Care” in
July 2007 that could serve as a guide for a U.S. plan.
Background Dying
has been viewed as a medical event in American hospitals, a mind-set
that limits the capacity of the health care system to provide optimum quality
of care and to contain costs. End-of-life with dignity, however, is a profound
spiritual event for patients, families, and oftentimes staff. If
handled well, the spiritual dimension of “une belle mort,” a good death, can
reduce costs and emotional suffering.
In
addition to the need to provide end of life care that is more responsive to
patients’ needs and desires, there is an opportunity for significant cost
savings .
Twenty-five
percent of the annual Medicare budget of $627 billion is spent on care for
persons in the last year of life, with 40% of that number spent in the last 30
days. Medical care at the end of life consumes 10-12% of the nation’s total
health care budget.
These numbers have not changed significantly over the last ten years despite
the fact that in-patient, residential and home hospice care services are less
costly and underutilized--and provide higher quality service. Existing
data (mainly from the 1980’s) suggest that hospice and advance directives can
save between 25 and 40% of health care costs during the last month of life,
with savings decreasing to 10-17% over the last six months of life.
The Congressional Budget Office forecasts that the cost of long term care will
reach $207 billion in 2020 and $346 billion in 2040.
Exploding
health care costs and unnecessary patient suffering will only accelerate with
the exponential growth in the population over 65 that will live
longer, have more chronic diseases, and require more care in their last years.
[4] People 85 years of
age and older – those most likely to need expensive long term care – were 1.7%
of the US population in 2005 but are expected to grow to 2.2% in 2020 – an
increase of 38% only 11 years from now.
Poor
quality and high end-of-life care costs have many causes, which include:
·
The
challenges of dealing with death for health care professionals, who often do
not know about their patients’ preferences for end-of-life care.
·
Patients
and their families not understanding their choices at end-of-life.
·
Focus
of medicine on curing disease and viewing death as the enemy or as a failure.
·
Most
insurance plans do not cover services that are necessary for good quality
end-of- life care. Traditional health insurance favors high-tech/high-cost
services and inpatient hospital care.
·
Health
coverage is often linked to site of care provided, rather than the person, and
by time limits not by the amount of service needed.
·
Many
dying patients may be better served with comfort care and interventions that
help families deal with forgiveness, reconciliation, and other topics that
arise at the end-of-life.
·
Issues
around access: Medicare beneficiaries who die in low income areas have higher
end-of-life costs, are less likely to use hospices, and are more likely to die
in a hospital than the general population.
Development
of a National Strategy for End-of-Life Care
It is critical to identify the barriers and incentives to moving larger numbers
of dying patients, earlier in their disease paths, from acute treatment to
comfort care into environments that are characterized by sensitivity and
respect. Conceptual and ethical challenges are inherent in this topic, but
research can identify innovative, cost-effective solutions in the best
interests of patients, state and federal governments, and hospitals. New thinking is needed about the management of death and dying. New
frameworks are needed that utilize the most effective intervention points by
which to move the health care culture toward an approach to end-of-life care in
which the whole person is served with medical and spiritual tasks better
balanced than they are today.
The
national health reform effort needs to include a national strategy for
end-of-life care. This could be accomplished within 6-12 months with the
immediate appointment of a National Panel of the leaders in end-of-life care to:
inventory
the challenges and innovative programs nationwide; propose new policy
frameworks at the federal and state level; and propose critical demonstration
projects.
Some of the issues to be addressed include:
·
Identifying
communication and cultural competency problems that impede the ability of
health care professionals to communicate effectively with patients and their
families about death and dying, thereby limiting patients’ abilities to make
informed choices;
·
Identifying innovative
approaches to educating health care professionals about death and dying;
·
Documenting
issues related to culture, communication, and dying that lead to unwanted and
unnecessary treatments;
·
Recommending
financial incentives to hospitals for discussing advanced directives with every
patient and her family (if applicable) and for obtaining signed advanced
directives; and
·
Authorizing Medicare
demonstration programs to provide reimbursement for assisted living programs
for persons with serious progressive illness and/or terminal diagnoses to test
the hypothesis that this care option might be preferred by individuals and be
more cost effective than the current pattern of frequent hospitalizations and
high tech interventions in the last year of a patient’s life. Individuals might
choose compassionate care over acute care or skilled nursing care; if
reimbursement were available (reimbursement might be limited to those with
annual incomes of less than $100,000).
HealthCare
Chaplaincy is committed to working with other organizations that share these
goals to assist the Health Reform movement to achieve a coordinated, integrated
strategy for quality end-of-life care.
[1] Emanuel, EJ, “Cost Savings at End of
Life. What do the data show?” JAMA, Vol. 275, No.24, 6/26/96.
[2] Hogan, Christopher, et.al.,
“Medicare Beneficiaries’ Cost of Care in the Last Years of Life,”
Healthaffairs.org/cgi/content/abstract/20/4/188, 2001.
[3] “Redefining and Reforming Health
Care for the Last Years of Life,” RAND Health Research Highlight, 2008.
[4] Ibid..
[5] “The New York Long-Term Care Compact
Proposal: Update, Analysis, and Recommendations,” Stephen A. Moses, President,
Center for Long-Term Care Reform, 2008, p.2
[6] “End of Life Issues and Care,”
Issues of Access and Variability in Health Care at the End of Life,”
http://www.apa.org/pi/eol/access.html.
[7] Valente, Sharone, and Bill Haley,
“Culturally Diverse Communities and End of Life Care, American Psychological
Association.
[8] Ibid.
[9] Raphael, Carol, PPA, Joann Ahrens,
MPA and Nicole Fowler, MHSA, “Financing end of life care in the USA,” Journal of the Royal Society of Medicine, v. 95(9), Sept. 2001.
[10] Ibid.
[11] Hogan, etc. al.
[12] End of Life Care Strategy, United Kingdom, July 2008.
[13] Assisted living offers an option that is half the cost
of skilled nursing care and a fraction of the cost of acute hospital care.
Current regulations in New York State, for example, permit assisted living
residences that apply for an enhanced assisted living license to care for
residents through the end of life, bringing in necessary skilled nursing and
hospice care. Persons facing serious progressive illness and end-o- life want
an environment that offers autonomy, independence, and privacy. Assisted living
communities are organized so family members can spend time with the individual
in a non-medicalized but supportive setting, in which basic care (assistance
with activities of daily living) are provided. This ensures the “peace of mind”
that family members need and want without the institutional model of a hospital
or nursing home.
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