I have heard it many times, “ I am the POA (wrong use of the term—what they mean is the Substitute-Decision-Maker (SDM) or as is often used in the United States Proxy: the POA is in fact the document outlining the substance of the decisions that are being referred to). But that being said what the person, often a family member, usually an adult child is implying is that by being appointed the SDM (either through an advance directive (living will) or appointed by the legal system or as is the case in Ontario through the hierarchy of the Health Care Consent Act, they can make the decisions on behalf of their family member—often a parent—often one with a disease affecting decision-making such as dementia.

What many SDMs do not realize or wish to ignore is that their role only comes into being when the person that are ostensibly acting for is deemed to have lost their capacity to make decisions—that is to see is incapable using the legal sense of the term—unable to understand and appreciate the implications of their decision-making for what is usually limited to health care decisions—and as it is in Ontario, application to a long-term care facility.

What this often means is that SDMs sometimes try to control decisions of their family members who have not been deemed to be incapable, but choose not to get into conflicts with the family members that they know will have to depend on them in the future. I have witnessed situations where an older person admitted to a hospital because of a fall or an injury, but who is mending and able to return home perhaps with some help, is directed by a family member to apply against their real wishes to a nursing home. When for example a social worker asks the person if that is what they want and they say, “no” the family member is often incensed that the social worker is interfering with the “rights” of the SDM to make such a decision on behalf of a reluctant or even refusing parent.

Sometimes it is a matter of not understanding the law, or not respecting the person on whose behalf you under other circumstances would be acting. At other times it is an issue of control and the SDM is trying to find a solution ostensibly for the benefit of the person, but at times it is also for the benefit of the SDM in terms of the demands on their time and energy.

Sometimes it revolves around issues of medical treatment where either the patient refuses or wishes a treatment that the SDM wants the opposite—the result is often what appears to be an either bullying or blackmail by the SDM toward to person on whose behalf they are to be acting or at extremes to the physicians who are trying to follow the law and adhere to the capable wishes of their patient.

It is not easy at times to act in the role of SDM especially for someone you love—the way I often frame it is rather than being a “right” to be carried out by the SDM, it is in fact the “right” to fulfill the duty that one who is appointed as SDM to act on the behalf of a dependent or vulnerable person—that duty is one of the privileges of life and should be undertaken with the utmost seriousness and devotion that one can bring to the situation.

A while back there was a headline in the New York Times about a well-known retired politician who was charged with rape for allegedly having sexual relations with his wife. This would of course not have been a story were it not for the fact that his wife was at the time of the alleged event living in a nursing home and experiencing cognitive impairment to a significant degree. The story as it unfolded was the result of her two adult children who were from a previous marriage bringing charges to her husband because it was felt that being afflicted with dementia and being deemed by her physician as “incapable” of providing consent to the intimate act, that he would therefore be liable for the criminal offence of rape.

Many who heard the story were shocked and astounded that a husband was not able to have sexual relations with his wife because she was living with dementia even though there was nothing to suggest that he was acting against her wishes or with force or coercion. The usual legal measure of consent was the one usually reserved for the giving of consent for a medical condition rather than for an act of sexual intimacy which had it occurred in the couple’s residence prior to her being admitted to the nursing home would not have resulted in what appeared to be quite a scandal.

As it turned out the husband was acquitted of the charges on what was in essence a technicality in that no one had actually witnessed the act on which the charges were laid and the evidence obtained was at best indirect. The importance of the case was not however lost on the legal profession and on those caring for those living with dementia. There were many who came to the defence of the intrinsic right of those whatever their medical conditions and their cognitive function to be able to participate in and enjoy the benefits and satisfactions of sexual intimacy whether at home or in a nursing home with those with whom they wish to share this precious physical emotional connection.

Maybe the time has come for people to express in the same way what they indicate as their wishes for medical treatments to those who will make decisions on their part that they wish to be able to participate in sexual intimacy with those that they have done so in the past or with whom they have indicated—whether in writing or communication—so that those perhaps who do not understand the importance of sexual intimacy or who have value systems that belittle the importance of such activities in one’s later life or when one’s cognition may not be “normal” can still enjoy the wonderful attributes of sexual intimacy.

At the time of my medical training, the term medical ethics was hardly used when discussing complex issues related to patients and families. For most of us in practice in the 1960's when I attended and completed medical school, the main source and inspiration for medical ethics was Hippocrates, and from that legacy we focused on the concept of ""First do no harm" (Latin: Primum non nocere)"; which in fact Is not per se a quote from the oath, but the essence of the concept contained within it. If you think of it, the implications of that ethical dictum did not really help direct physicians: as medical care became more complex the avoidance of harm unless within a framework of "on balance" with proposed or possible "benefit" might have undermined most of the substantial progress of medical care—contemporary care has substantially changed the nature of care, but often at the cost of potential adverse outcomes in order to achieve remarkable goals.

In the late 1970's in North America, emanating from scholars from Georgetown University in Washington D.C., the first edition of the Principles of Medical Ethics, edited by Beauchamp and Childress came into being. This book and the thesis within it had a profound impact for the future of medical ethics especially in North America where the concepts contained in the book were eventually adopted and integrated into contemporary medical practice. It became gradually integrated into the complexities of clinical and health care policy decision-making. The main impact on the ethical framework for patients, families and physicians was the introduction of the ethical principle of autonomy as a primary powerful principle that in many ways displaced for primacy, beneficence (the duty to do good) as a dominant if not over-riding ethical principle.

With the integration of autonomy as a critical if not dominant ethical principle, the nature of medical decision-making and balance of how complex decisions are made and what the deliberations consist of, has changed remarkably. The ability as supported beyond ethics, but also in legal jurisprudence, now requires all of us in practice to communicate with our patients and/or their legal substitute decision-makers the nature of our clinical decisions. The most important revolutionary change that followed the introduction of the concept of autonomy was the accepted ability and right of patients and/or their substitute decision-makers to refuse, withdraw or request that even potentially life-saving or life-maintaining treatments be withheld. This is in sharp contrast to the culture under which I was educated, where a physician's opinion and recommendation was almost a "holy writ" and medical orders could be made without any discussions whatsoever with patients and families. I can recall as a medical student, working as a junior house officer (intern) making monumental medical decisions, usually with the support of a medical resident (registrar as they were referred to in Scotland where I trained) without actually speaking to the patient or family—it was just the domain of the physician.

The concept of autonomy and the introduction of the balanced ethical considerations of this principle with the three cardinal others; beneficence, non-maleficence and justice now form the contemporary ethical framework in which most of us work. There are other ethical considerations that come into discussions of medical decision-making and medical policy—but for most physicians and other health care providers, the four ethical principles espoused in that first edition of Principles of Medical Ethics appear to dominate contemporary approaches to medical ethics in clinical practice.

With that in mind it was decided by the editors of Health Plexus to introduce a section on medical ethics, with a primary, but not exclusive focus on the elderly, and those with multiple co-morbidities and cognitive impairment. Readers are invited to submit concise case histories reflecting challenges that they have faced in the arena of medical ethics and where possible some discussion of how the clinical situation was handled, its ultimate resolution if there was one and the impact of the clinical scenario and ethical challenges on all the clinical staff and the patient and family involved. These cases do not have to be the monumental ones that often make it into the court system or the media, but rather the everyday cases that we all deal with on an almost daily basis and usually resolve with good will and good communication and sensitivity to the issues involved.

I invite you to read the first contribution to this section Discussions with your Doctor about your Future Wishes on the following page.

There are days in my clinic where I seem to be having the same conversation over and over—but with a different patient and different family. I have often thought that a model of care I once heard a presentation about might be worth doing—having the equivalent of a group therapy, but with a number of my patients and their families to discuss the common problems in aging and cognitive function. The majority of those I see in my office practice these days are elders living with some degree of cognitive impairment—ranging from the mildest of forms, to those with quite severe impairment so that the label of dementia is appropriate. Whether the condition is due to Alzheimer's disease, blood vessel (vascular) disease or as is the case in most that I see, a combination does not matter that much in terms of what it means for patients and their families.

The points I try to make to those who come to me is that at this point there are no cures, there are medications that may control symptoms to some degree but the essence of life is to keep living at whatever level one can. In addition the importance of planning for the future is clear and should be addressed by patients and encouraged by family members.

Of the important parts of the conversation that I focus on are what the person would prefer should they no longer be able to make important decisions again. Those are very important conversations and have to be emphasized time and again. Even though writing a living will or as is the correct term an advance directive, is not legally necessary, it is sometimes helpful to have one to eliminate and conflicts from those acting on your behalf as to what you would have really wanted in the end-of-situation.

Sometimes it isn't enough to write down your wishes, but to make sure those you have entrusted with carrying out your wishes can be trusted with that duty—that is not always an easy task for caring family members. If you cannot be sure of that commitment it may be worth looking for someone to appoint who is not a family member but rather a close and trusted friend—it might lead to hard feelings from your family—but that is the way the law works and it is also part of human nature.

Have the conversations including with your physicians, your family members and if necessary your closest friends so that when the time comes, you can rest assured that your wishes, your values and your preferences will be respected.