By STANLEY A. TERMAN, KARL E. STEINBERG in the San Diego Tribune
Terman, Ph.D., M.D., is a psychiatrist and bioethicist. He lives in Sausalito. Steinberg, M.D., is a hospice and palliative medicine specialist, bioethicist and nursing home and hospice medical director in Oceanside. The opinions expressed are those of the authors, not the organizations with which they are associated.
No one doubts the importance of completing living wills — especially for advanced dementia — a cruel disease that most people dread since it can cause prolonged dying with severe, irreversible suffering as it imposes huge burdens on loved ones. But by themselves, living wills will not be adequate if your future physician refuses to honor its requests. A recommended request is: “Cease putting food and fluid into my mouth if I reach a specific condition.” Honoring this request can prevent being forced to endure years of suffering since you will not need to wait to die from a heart attack, or untreated infection such as pneumonia. After you no longer can feed yourself, the only legal, peaceful and effective intervention may be to cease assisted feeding and hydrating by another’s hand. This challenging and controversial intervention raises questions for your physician, and for you.
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Is your physician’s refusal to honor your wishes good or bad? “Good” means in your “best interest” such as preventing premature dying. “Bad” means forcing you to endure prolonged, and likely increased, suffering with little or no benefit.
Are physicians’ actions well-meaning or selfish? “Selfish” means refusal benefits your physician as it harms you. Physicians’ hubris leads to their desiring that their actions are viewed favorably — while you suffer longer, and more. Many physicians want to view themselves as heroes who sustained your life. But the ethical position of the American Medical Association is clear: “The social commitment of the physician is to sustain life and relieve suffering. Where the performance of one duty conflicts with the other, the preferences of the patient should prevail.”
A comprehensive question for physicians to ask: Are their actions legal, ethical and respectful? You have a claim right to self-determination (what happens to your body) and to avoid suffering. Claim rights impose a duty on others to act by honoring your rights, so … physicians should attempt to reduce your suffering and physicians should not violate your bodily integrity. This includes assisted oral feeding and hydrating — if you previously refused it. In addition to being unethical, force feeding may be illegal since battery is a crime. Yet some physicians argue they must consider all available information, strive to do no harm and maximize what they feel is your benefit. Hence, your living will’s future success depends on your resolving common conflicts during advance care planning.
Some questions for you: Do you prefer fast and easy living wills that ask you only to check a few boxes before signing? Do you consider your task complete once you clearly expressed your wishes? Is your living will specific enough to avoid conflict? Is it comprehensive so you don’t suffer from omitted conditions? Does it strive to be “clear and convincing” — the highest evidence standard in civil law? Will you record a persuasive video on which you state what you want, and explain why?
Even the above amount of effort may not be successful. A large, influential physician organization, The Society for Post-Acute and Long-Term Care Medicine, recommends not honoring requests to stop assisted feeding until you manifest behavior it interprets as either refusal or distress. Also, physicians and others can allege you changed your mind based on observing you open your mouth and swallow what others put in. But your apparently cooperative behavior may result from reflex or habit, after dementia has caused you to forget your critically important life values — to avoid suffering and imposing burdens on others.
Advance care planning must lay the groundwork to persuade future physicians to honor your end-of-life wishes. Living wills can include cogent arguments that cite clinical literature and case law to compel your physician to respond — especially if conflicts escalate to court. Among several recommended strategies, here are two.
Insist no one can claim you changed your mind to want spoon feeding — unless two experts qualified in the fields of dementia, capacity and assisted feeding so testify within a reasonable degree of medical certainty.
Store your printed forms and videos in an electronic registry so physicians and EMTs can expeditiously retrieve the current versions.
Admittedly, there is no proof (yet) that adding recommended strategies will increase your chance of success. (The reason: it will take years to gather enough data for those who completed advance care planning to eventually encounter conflicts.)
So can you trust doctors to honor your end-of-life wishes? Are you kidding? Current experience leads to this recommendation: Do not kid around. Put in the required time and effort to give yourself the best chance of experiencing a peaceful and timely dying.