Whom can you trust with end-of-life decisions?
It is almost a given that older individuals invariably appoint their children to be their substitute decision-makers when they set out to create a power of attorney for personal care, whether or not it includes an advance directive known colloquially as a “living will.”
The understandable assumption is this: who can you trust to better fulfil your most important decisions about end-of-life care than your most cherished family members? It’s one thing if you have never communicated your wishes to your children, something I suggest is a serious abrogation of crucial communication. It’s another if, after you have expressed your deep-felt wishes, your children choose to reinterpret or apparently ignore your instructions for their own personal reasons or values.
I am not referring to the unfortunately common phenomenon of what family therapists may refer to as “dysfunctional families” of which there seem to be a wide spectrum, but to the fact that varying degrees of family strife and conflict are not uncommon. I am concerned as much about apparently fully functional and ostensibly loving and respectful families who become dissociated from those they are supposed to represent when important decisions have to be made, and couch their decisions in terms of apparent psychological conflict. This type of conflict is often called “moral distress” when health-care professionals find that they are acting on decision-making processes that conflict deeply with their professional and personal values.
I have had cases where the older patient’s wishes that my colleagues and I were asked to comment on appeared to be clearly expressed and documented but were overridden or ignored by apparently loving and devoted children. A commonly repeated scenario is that an older person writes a living will in the presence of a responsible legal advisor and has consistently indicated a mentally competent wish to not have a permanent feeding tube provided under defined circumstances.
Yet, the children end up requesting that such a tube be inserted even in the face of the apparently contradictory instructions. This often occurs in late-stage dementia or other brain diseases where the level of mental interaction with those the person loves will never return to any semblance of function acceptable to them.
I have heard children claim, even in the face of very clear instructions about not wishing permanent artificial nutrition and hydration (a feeding tube) in a well-documented living will, that they “cannot bring themselves to make that decision,” or that they “could not live with themselves in making such a decision.”
I have witnessed cases that eventually get referred to the legal tribunal that adjudicates such situations. Then, even in the face of a decision that upholds the living will instructions, the family pursues all other legal means possible to allow them to not carry out the wishes of their parent. These cases often involve families that espouse love and devotion as the reason for their failure to follow the instructions.
What is the solution, short of designating a non-family member you can trust as your substitute decision-maker, someone who is not intimately involved emotionally in the necessary decisions? At a minimum, you need to to discuss your wishes with your loved ones and have them assure you as much as anyone can that they understand what you are asking and that they are willing and able to respect your wishes, even if these wishes may be in conflict with their own beliefs, values and emotional capabilities.
Dr. Michael Gordon is medical program director of palliative care at Baycrest. His latest book is Late-Stage Dementia, Promoting Comfort, Compassion and Care. His previous book, Moments that Matter: Cases in Ethical Eldercare, follows his memoir, Brooklyn Beginnings: A Geriatrician’s Odyssey. All can be researched at his website: http://www.drmichaelgordon.com.