Opinion: Can you trust doctors to honor your end of life wishes? Here’s what to consider.
Terman, Ph.D., MD, is a psychiatrist and bioethicist. He lives in Sausalito. Steinberg, MD, is a palliative care and palliative medicine specialist, bioethicist and medical director of a nursing home and hospice in Oceanside. The opinions expressed are those of the authors and not of the organizations with which they are associated.
No one doubts the importance of filling out living wills – especially for advanced dementia – a cruel disease that most people fear as it can cause prolonged death with severe and irreversible suffering as it places a tremendous burden on people. loved ones. But on their own, living wills won’t be enough if your future doctor refuses to honor their requests. A recommended request is: “Stop putting food and liquids in my mouth if I have a specific condition.” Honoring this request can avoid being forced to endure years of suffering since you won’t have to wait until you die from a heart attack or an untreated infection like pneumonia. Once you can no longer feed yourself, the only legal, peaceful, and effective intervention may be to stop assisted feeding and hydration by another person’s hand. This difficult and controversial procedure raises questions for your doctor and for you.
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Is your doctor’s refusal to honor your wishes good or bad? “Good” means in your “best interest” such as the prevention of premature death. “Bad” means forcing yourself to endure prolonged and possibly increased suffering with little or no benefit.
Are the actions of physicians well-intentioned or selfish? “Selfish” means that the refusal benefits your doctor because it is harming you. Doctors’ pride leads them to wish their actions were viewed favorably – as you suffer longer, and more. Many doctors want to see themselves as heroes who have supported 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. When the accomplishment of one task conflicts with another, the patient’s preferences should prevail.
A complete question for physicians: are their actions legal, ethical and respectful? You have a right to self-determination (what happens to your body) and to avoid suffering. Claims rights impose a duty on others to act in honor of your rights, so … doctors should try to reduce your suffering and doctors should not violate your bodily integrity. This includes assisted oral feeding and hydration – if you have already refused. In addition to being unethical, force-feeding may be illegal since battery life is a crime. Still, some doctors argue that they should take all available information into account, do no harm, and maximize what they feel is your benefit. Therefore, the future success of your living will depends on your resolution of common conflicts during advance care planning.
Some questions for you: Do you prefer quick and easy living wills that only require you to tick a few boxes before signing? Do you consider your task completed once you have made your wishes clear? Is your living will specific enough to avoid conflicts? Is it complete so as not to suffer from omitted ailments? Does it strive to be “clear and convincing” – the highest standard of proof in civil law? Are you going to record a compelling video where you will express 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 that you do not honor requests to stop assisted feeding until you demonstrate behavior that it interprets as refusal or distress. Also, doctors and others may claim that you have changed your mind by watching yourself open your mouth and swallow what others put in it. But your seemingly cooperative behavior may be the result of a reflex or habit, after dementia causes you to forget your critically important life values - to avoid suffering and placing burdens on others.
Advance care planning should lay the foundation to persuade future physicians to honor your end-of-life wishes. Living wills can include convincing arguments that cite clinical literature and case law to compel your doctor to respond, especially if disputes escalate into justice. Among several recommended strategies, here are two.
Emphasize that no one can claim that you have changed your mind in favor of spoon feeding – unless two qualified experts in the fields of dementia, capacity and assisted feeding testify within a reasonable degree of medical certainty.
Store your printed and video forms in an electronic ledger so doctors and paramedics can quickly retrieve current versions.
Granted, there is no evidence (yet) that adding recommended strategies will increase your chances of success. (The reason: it will take years to collect enough data that those who have completed advance care planning will eventually run into conflict.)
So, can you trust doctors to honor your end-of-life wishes? Are you kidding? Current experience leads to this recommendation: Don’t joke. Devote the time and effort necessary to give yourself the best chance for a peaceful and timely death.
Terman, Ph.D., MD, is a psychiatrist and bioethicist. He lives in Sausalito. Steinberg, MD, is a specialist in palliative care and palliative medicine, bioethicist, and medical director of nursing and hospice care in Oceanside. The opinions expressed are those of the authors and not of the organizations with which they are associated.