Anthony Corso | Stratford Court
|Courtesy Stan Terman
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A highly controversial, yet timely and important subject was recently presented by psychiatrist/bioethicist Stan Terman, PhD, MD, at a meeting sponsored by Del Mar Community Connections. It was entitled “The Best Way to Say Goodbye if you will live with Advanced Dementia or unbearable pain.” It dealt with issues surrounding the often prolonged and painful dying of those living with advanced dementia, such as Alzheimer’s, vascular, and Parkinson’s.”
Dr. Terman’s mission is devoted to reducing the suffering of huge numbers of people, since by mid-Century, the number of people living with dementia worldwide is predicted to increase from today’s 44 million to over 130 million.
The doctor notes that many have considerable fear of reaching the stage of advanced dementia when they will be unable to care for themselves and face a highly stressful and regrettable future. He asked audience members about their fear by distributing a questionnaire entitled “Worried about Your Risk of Reaching Advanced Dementia?” Fear proved prevalent among audience members when the questionnaire was “tabulated” and discussed. Dr. Terman noted fear is substantial among people between 25 and 89. They consider Alzheimer’s disease and other forms of dementia to be the scariest disabling condition of later life--even more frightening than cancer, stroke. heart disease, diabetes, and arthritis combined. He noted that many persons older than 65 will die with dementia.
In light of the magnitude of individual concerns for what might lie ahead and relative ignorance as to how to deal with advanced dementia, the doctor offered two major recommendations: From a positive perspective, follow acknowledged suggestions for achieving a healthful and long life, including regular exercise, diet and pursuit of a meaningful life plus certain dos and don’ts.
Secondly, he highly recommends completing a “Living Will” that establishes the parameters for care if dementia should occur and endorses “Natural Dying” which is refusal of assistance with spoon-feeding, that can allow a “peaceful dying.” He concludes, “Dying by medical dehydration is legal, ethical and moral.”
The Living Will should express specific conditions indicating when all interventions that merely prolong dying or increase suffering are to be stopped. The doctor recommends patients record themselves on a convincing video to explain why they want to refuse assistance to eat and drink and consider it instead as “forced-feeding.” In addition, the Living Will should be strengthened by entrusting a person (proxy/agent) to make sure one’s wishes will be followed. It seems appropriate that it be discussed with family members and religious advisors as a means of seeking their approval for the directions the individual has authorized.
Stanley Terman, PhD, MD, is a physician, psychiatrist and bioethicist and the Medical Director and CEO of Caring Advocates with offices in Carlsbad, California (2730 Argonauta Street; 800 64 PEACE or 760 431 2233). He is the author of four books and numerous articles on Natural Dying, Dealing with Terminal Illness such as Alzheimer’s, and Living Wills. Caring Advocates provides assistance in the design of Living Wills, and how to plan effectively to reduce suffering if one reaches Advanced Dementia. The website offers a variety of educational materials including how to make sure pain and suffering are adequately treated in any terminal illness.
Several handouts distributed at the session are here.