REVIEWED BY SR. M. PETER LILLIAN DiMARIA, O.Carm., L.N.H.A.
The Moral Challenge of Alzheimer Disease, Second Edition
Stephen G. Post
The Johns Hopkins University Press, Baltimore, MD
2000, 157 pp., $18.95
(paperback) or $39.95 (hardcover)
The turn of the millennium brings us to a new world filled with treatment
and technologic advances that may provide hope for unlocking the secrets of
many diseases and assistance in deciding which treatments are appropriate, futile,
or burdensome. One disease that has followed us into the new century is Alzheimer
disease (AD). Currently, four million Americans have AD. Many of these four
million are still living at home, with a family member as their caregiver. In
many cases, as the disease progresses the person with AD begins to require 24-hour
care, seven days a week — at which time many caregivers seek long-term care as
an appropriate alternative. Many challenges confront a person with AD, and many
of these challenges will be shared by their caregiver, whether they be a family
member, friend, or health care provider. Moral issues will become the greatest
challenge, and informed decision making will be most critical. In the book "Ethical
Issues from Diagnosing to Dying: The Moral Challenge of Alzheimer Disease,"
Stephen G. Post addresses the difficult challenges associated with the progression
of AD from diagnosis to dying.
In the first two chapters, Post focuses on "the moral challenge of inclusivity
and care for deeply forgetful persons and the family's role in meeting this
challenge" (p. 44). The rest of the book focuses on very specific ethical dilemmas
for which every patient, caregiver, and provider should be well advised. Post
presents the following chapters, which present issues and concerns that confront
people who are affected by AD: "The Fairhill Guidelines on Ethics" (with Peter
J. Whitehouse), "Genetic Education," "Enhancing the Well-being of Persons with
Dementia," "The Case against Artificial Nutrition and Hydration" (with Margaret
C. Circirella), "An Argument against Assisted Suicide and Euthanasia in the
Context of Progressive Dementia," and "A New Ethics of Dementia Care."
The book is written in such a way that the reader cannot help but become aware
of the sincere compassion that Post feels toward people with dementia. The content
challenges the reader to reflect on the moral issues and the significance of
providing palliative care in combating the desire for assisted suicide. He stresses
the importance of good palliative care practices in the treatment of AD and
expresses his philosophy as "prevent, delay, or cure this disease, treat behavioral
problems with appropriate psychiatric medications, and avoid pain and suffering,
but do not make efforts to extended lives in the advanced state of this terminal
illness" (p. 10).
Post states that he does not believe in assisted suicide, and because of the
real life experiences he has had in listening to thousands of people dealing
with AD, he brings to light compassionate alternatives and instills a sense
of hope in those who have been diagnosed with AD. He states, "By giving people
with dementia this hope for dignified care, we make the appeal of assisted suicide
less powerful." (p. 126).
Post has provided a well-researched book with an outstanding bibliography
that will be helpful to all caregivers as well as health care providers. The
book is well organized, with each chapter dedicated to the various issues faced
during the different stages of AD. This text provides information to guide readers
before and during ethical and moral decision making and is very sensitive to
the various emotions that one endures when the diagnosis is AD.
Sr. M. Peter Lillian DiMaria, O. Carm;
Director, Avila Institute
of Gerontology, Inc.
Carmelite Sisters for the Aged and Infirm
Germantown,
NY