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The
Physician Assisted Living (PAL) program repre- sents a bold and
I hope successful effort to help people grasp the basic concepts
they need in order effectively to make choices about the time they
have remaining in their lives. The basic concept, is captured in
the title—Physician Assisted Living—living being the key
word. Death occurs in a moment and all the time that stretches from
birth until that moment is, in fact, life in which choices need
to be made. The PAL program promises to create a context that will
foster the learning necessary to understanding and choice.
Begin with knowledge and choice :
Alexis de Tocqueville and countless other observers have commented
on the individualism that underlies our American social institutions
and behavior. In today's society we take the "right" to
know all there is to know about ourselves very seriously, even extending
it to the right to know what information others might have on file
about us. Similarly, wherever there is the option to make a choice,
we take the strong view that we have a "right" to choose
and included in this, is the "right" to be informed of
the options, to be offered choices.
The
Medicare program was enacted with strong provisions asserting that
citizens covered by the program would have the right to receive
services from any provider willing to meet the program's standards
and provide the care. The beneficiary makes the choices; Medicare
pays the bills.
But,
of course, choice is rarely a simple issue especially if the facts
are complex or obscure. For choice to be a real possibility for
people, there must be information about the
THOMAS HOYER, B.S., M.S., director, Chronic Care Purchasing Policy
Group in the Health Care Financing Administration' s Center for
Health Plans and Providers.* Mr Hoyer has been with HCFA in various
positions since 1972. He holds B.S. and M.S. degrees from Indiana
University and M.B.A. from Loyola University.
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possibilities available, as well as
a way for the individuals to receive this information and to consider
it in making their choices. The Medicare program has The Medicare
Handbook and countless other publications to assist beneficiaries
in learning the options and making choices. The Department of Health
and Human Services (HHS) also provides grants for insurance and
other kinds of counseling for the elderly. Still, the appropriate
reach of HHS's efforts extends only to making sure that information
is available and to assure that choices are honored. To go further
than that is to invade the individual's right to choose.
The result of these limitations is that
we have a program that offers the right to refuse treatment; that
mandates "rights" for residents of nursing homes and other
providers; that requires providers to inform patients of all their
rights and potential liabilities; and that instructs providers to
ask whether an individual has an "advance directive" and,
if so, to provide care in compliance with it. Medicare's hospice
benefit, where a patient makes an "election" for hospice
services, requires an exchange of information and full understanding
between the patient and the hospice provider. We require that
the patient acknowledge at least that "he or she has been given
a full understanding of the palliative rather than curative nature
of hospice care, as it relates to the individual's terminal illness."
At the
time this language was written, it was viewed as an easier way to
provide a hard truth about prognosis and its result, but it was
done that way because information from the hospice community persuaded
HCFA that the task of helping individuals work through the issues
in
*This Group is responsible for Medicare policy on durable medical
equipment and devices, skilled nursing facilities, home health agencies,
hospices, partial hospitalization, end-stage renal disease facilities,
program of all-inclusive care for the elderly, and cost report issues.
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volved required that hospice personnel spend some time in assisting
patients to understand—in Connecticut's terms, the meaning
of palliative care and "assisted living." It is a mark
of how deeply imbued the connection between hospice and death is
in our society that it has taken me many years to understand the
extent to which the hospice benefit is really about living and not
about dying.
Planning
health care around one's life is not a new idea. Families plan the
birth of their children around jobs and vacations and other children.
Elective surgery is planned around other life events to assure that
their effects fit as well as possible with other activities. Similarly,
the media are full of material about planning for one's retirement—perhaps
the last period of life. Many of my friends are working diligently
to assure that their retirement incomes and savings will be adequate
to their needs. But yet, these people, who so carefully plan for
an active retirement and for how their estates will pass to their
children or other relatives, do not plan for that period when their
functioning may be restricted by ill health, but during which they
may still be active, in possession of their faculties, and capable
of choosing among the alternatives that will affect the quality
of their lives.
It is
in this area that I believe that the PAL initiative in Connecticut
can be most useful. Not just at the time when it becomes mandatory
for patients and families to begin planning, but earlier, when they
recognize that they will have choices to make and begin to discuss
them; earlier, when they begin to do what they need to do to make
calm and rational choices.
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Choice
requires knowledge of possibilities. The law and most systems of
morality are based upon both knowledge and choice, and ignorance
is not much of a defense if one fails to make a choice when one
is offered. Then the choice will be made by others in the "default."
People familiar with computers know about "defaults,"
since this is the term used to define the choice to which a computer
program will "default" if the user does not make a choice
of his or her own. People with illnesses that limit the time remaining
to them and who have failed to learn their treatment options and
make their choices use the "default"; they are subject
to the choices of others. They have, in fact, thrown their autonomy
away.
Over
the years, as citizens have learned more about the nature of the
forces that affect their lives, they have developed an increased
appetite for information and choices—in the labeling of the
food they eat and the liquids they drink, in the financing of their
homes, and in countless other areas. The mysteries of the end of
life remain for many a frontier of ignorance and acquiescence in
the choices of others. But there are signs everywhere that this
frontier is being breached by better information and the determination
of people to take control.
More
than any other strength that it has, PAL shows promise of preparing
people for the choices they will need to make and enabling them
to make these choices naturally and normally in the course of their
everyday lives.
I
see the PAL program as a program that encourages people to choose
life—right up until the end.
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