Friday, December 16, 2011

The Right to Die

Last week I had lunch with two former colleagues in social work with whom I worked for about thirty years. As often happens, part of the conversation involved stories of colleagues who have either died or have serious health problems. I want to stress the word "part" because I have shared the common negative perception that death and illness occupy most conversation of the elderly. One of the "benefits" of having lived through the Aid's epidemic is the realization that being acutely aware of mortality and illness is not an exclusive characteristic of the elderly, but forms a part of anyone's life at any age who has come face to face with those vulnerabilities. While, at one point in my life, I would have reacted with distaste to such a topic of conversation, since the experience with Aid's and becoming elderly myself, I am more comfortable with the naturalness of sharing those concerns, as long as the topic doesn't become the predominant focus of the conversation.

Just one block from my home there is a chronic care facility that would be most accurately described as a warehouse for people. It is a concrete structure of Stalinist-era architectural design, ten stories tall, with small windows. It houses mostly the elderly and some physically handicapped whom it has been determined cannot live on their own. While the rooms of residents on the upper eight floors are not air conditioned, the staff floors have windows fitted with air conditioners. Imagine the stifling heat and over whelming odours of the patient floors on hot Summer days, when the building stands totally exposed to the heat of the sun. Sometimes, as I walk by with my dog, Zoe, I hear the moaning of residents, who have, evidently, not been adequately meditated into tranquility. That establishment serves as a portent for me of an end of life care that I would  dread and would not want to survive to experience.

It's grounds are surrounded by a high, chain link fence and you almost never see any of the residents beyond the fence, although on one very cold evening in mid-Winter I encountered an elderly woman on the establishment side of the fence, dressed only in her night gown and slippers, searching desperately for a way out of the enclosure. I reported the situation to the staff, who were totally unaware of her attempt to escape. Two summers ago there was a blond boy, who looked to be in his early twenties and whose severely limiting muscular dystrophy produced violent, spastic movements. Despite his limitations, he was one of the few who regularly ventured beyond the fence in his electric wheelchair. Zoe, although she is generally frightened of large, mechanical objects, such as vacuum cleaners, is especially fond of people in wheel chairs; no doubt because, since she was a pup, she has known a man in our neighborhood who makes a fuss over her whenever we encounter him on our walks.

Tail wagging and pulling on her leash, she eagerly approached the boy, who seemed just as eager to pet her, though, sadly, he didn't have adequate enough control over his muscles to succeed in actually touching her. We met him several times on our walks, until one day he, awkwardly, but without leaving any question as to his intentions, communicated that he wanted to have sex with me. Though it did flash through my imagination what accepting his request would entail, I, just as awkwardly, declined. I found the situation embarrassing enough to change the route of our walk and the last time I saw the boy from a distance he looked to be attempting to score dope from one of the several neighborhood dealers. I hoped he wasn't looking for another sexual encounter, because that particular dealer had passed me once on the street and muttered "faggot" under his breath. Likely, the boy was subsequently moved from that residence to one which was more secure or less urban. It's painful to imagine what his life must have been like; being gay, wanting all the things a young man would desire, and confined to a residence almost exclusively for the elderly at the end of their lives.

One of the elements I found interesting in the lunchtime conversation with my friends was that all three of us, reflecting on the incredible unhappiness of friends who have found themselves in long term care facilities, have made arrangements with friends or family members to help us terminate our lives if we are faced with the prospect of long-term, chronic disability in a typical, end-of-life institution. Our determinations to end our lives in a condition of some dignity contrasts sharply with recently reported concern in the mental health community related to the growing number of suicides amongst the elderly. Those reports tend to focus on the presence of untreated depression in the elderly and the need for better end of life care; never mentioning the fact that people may feel more at ease with ending their own lives in the context of decline in traditional religious beliefs.

I think the ethical and legal debate related to assisted suicide currently occurring in much of the Western world illustrates the reality that there is precious little ethical argumentation against the ending of one's own life. Most objections are raised by religious believers, citing what they refer to as the "sanctity" of human life or by advocates for the handicapped fearing the abuses that could be committed in the practice of assisted suicide.

There are some ethical concerns to be raised in relation to the choice to end one's life. An important one is the extent to which that choice is a free choice. The criteria of what constitutes a free choice in such a context are an important subject of discussion. Among those criteria is the degree to which the capacity of an individual to make such a choice is encumbered. There is good reason to prevent someone whose faculties are temporarily impaired by clinical depression or intoxication, for example, from making the choice to end their ives. Similarly, there is good reason to intervene against such a choice being actualized when it is made in response to living situations which are either abusive or neglectful; situations which could be remedied by social and medical intervention.

Much of the physical and emotional suffering involved in chronic, debilitating end of life conditions could, in principle, be met through a government committed to providing quality palliative and long term care. Unfortunately, most of us live in countries where providing those services has been far from a priority; for the most part, such care is accessible only to the rich. Consequently, in assessing the ethical soundness of a decision to end one's life the realistic potential for actually receiving adequate care in order to remain comfortable must be taken into account, rather than making reference to some ideal situation. My mother, as an example, was able to afford twenty-four hour care in her own home when she survived into her nineties. I remember being surprised when she remarked one day, sitting in her lazy boy rocker to which she was mostly confined, that she still felt she had a good quality of life. Nevertheless, she was clear that she would rather end her life than face living in an end of life residence; she expressed hope that someone would facilitate that wish were that time to come.

I have spoken with many clients dying from incurable diseases; not just in connection with Aids. The majority of them expressed the wish to end their lives before they reached a point of incapacity or suffering they felt would be their limit of a satisfactory life. I have always supported them in their desire to determine those conditions for themselves and to act when they felt the point had come when they no longer continued to live. The fortunate ones would have a physician or friend willing to help them in accomplishing a peaceful, comfortable death; others often suffered from being left to their own improvisations.

One of the things I found striking about following those clients through their decline was the frequency with which they would reach a limit they had identified as the trigger for choosing to end their life, for example, when they lost their sight, only to chose to go on living with that loss. In my experience, a person who is adequately supported is not likely to rush into ending his life; on the contrary. However, I believe a person who has arrived at a self-identified limit, considers the reasonable probability of their quality of life after passing that limit, and remains with the decision to end their life should be supported. There can be no wrong in helping an individual perform an act when that act is itself is morally acceptable.

I see no point in debating the issue of taking ones own life or assisted suicide from a religious perspective, unless one shares that particular perspective. Religious interdictions against taking ones own life are based on a particular world-view, a belief in understanding the values of their particular divinity, rather than any reasoned position. In a secular society that particular perspective should not be imposed on those who do not share those beliefs. In order to make such an imposition there would have to be some moral basis for the prohibition against taking one's own life, as can be provided for prohibitions regarding talking the life of someone else against their will. It is paradoxical that many believers are more stringently opposed to the taking of ones own life than they are to taking the lives of those they deem unworthy to live.

If the notion of the "divinity" of human life is dropped, what possible moral basis is their for condemning a reasoned choice to take ones own life? So far as I am aware, none. From the perspective of the individual making such a choice, they are not doing harm to themselves; rather, they are taking action to prevent further harm and suffering. While their action may result in emotional pain for those who love them, that is a concern for them to take into account in making their choice. The choice to take ones own life is far from the only significant choice an individual might make in their lifetime that can result in pain for those close to them; divorcing, deciding not to have children or to live an alternative life-style being just a few, common examples.

Recognizing such a right would sometimes lead to abuses, but the exercise of nearly any right can be abused; for example, both the right to free speech and assembly can be used to promote hatred that leads to violence against minorities. Nearly any act taken to alleviate pain and suffering can be abused; medications over prescribed and protective measures used for exploitative or political ends. Were assisting someone in taking their own life used to eliminate the handicapped or aged and not as a consequence of that individual's reasoned, free choice, such assistance would be tantamount to being an accessory to murder or to murder itself. Abuses simply illustrate the need for further delineation of a right or for palliative action and for  responsible social regulation and surveillance.

When my aunt and uncle were in their late eighties he had become quite feeble through a degenerative condition and wasn't expected to be able to live for much longer outside an institution. His wife was quite fragile herself and, despite the fact that they had the resources with which to access the supports that were available, both felt that the time was fast approaching when their independence and ability to live together in their own home would be threatened. They had always been a very close couple, had only one child, a girl, who seemed, somehow, to be on the periphery of their coupledom; she spent a lot of time with our family. The major focus of their lives seemed to be their home and gardens; always comfortable and beautiful; in a Martha Stuart sort of way before that brand existed.

Increasing pressure was being placed on them by their daughter and professional caregivers that he be hospitalized and she go into a care facility. Instead, they decided to end their lives together, making a pitcher of their favorite drinks, going into the closed garage, starting the engine and sitting together in the back seat of their car. Unfortunately, they made the mistake of leaving a message for their daughter, telling her their plan and saying their goodbyes. When she received the message she immediately called emergency services, who broke into the garage, found the couple unconscious in each others arms, but still alive. They were revived, hospitalized, separated; he kept alive for several, unhappy months and her for several years. I feel interrupting their plans was cruel; that their daughter had put her own feelings and beliefs ahead of what her parents had wanted. Had I been their child I like to think I would have assured they had enough time to die together before making that call to emergency services; that is what I would want my own children to do.


  1. Sigh... so sad and sensitive a subject and yet necessary . Well done, Bruce.

  2. Thanks Nick. Hope you have a Happy New Year.