Death with dignity: the ultimate human right? - The Popular Condition - Brief Article - Editorial

I don't ever remember a time when my father wasn't sick. My earliest memories were of him in a hospital bed. While there were periods of time when he felt good, they were often punctuated by large setbacks that put him in the hospital for weeks at a time. My father, an executive at IBM in the 1980s, had built a good life for his family and cared deeply about his two daughters and his wife. Yet he knew that his time was limited and would probably be over before he turned forty.

My father died when I was nine. He was forty-one and had outlived all of the expectations that anyone had for him. He and my mother were surprised with two children after having been told that they couldn't conceive because of the medication he had been on. They were told that any children they did have would most likely be stricken with the same disease he had--a rare form of rheumatoid arthritis that destroys not only the joints but the internal organs as well, at a young age. Both my sister and I were born healthy and, to this day, have no indication of RA. My father was told that holding down a job would be impossible, yet he managed to move to the upper executive level at IBM with little more than a high school education.

The only prediction that did come true was he died.

Death is an inevitable part of life and it is the only guarantee that we come into this world with. Eventually, our bodies will be our shortcoming. For some of us, this will happen suddenly and unexpectedly in a car or plane crash or from a sudden stroke or heart attack for which there was no obvious warning. For others--for those like my father--death is an event clearly visible on the horizon. It is an event that is forecasted, feared, and at times yearned for. For those of us who will develop terminal illnesses, death will hang ominously over our heads. Death will wage a war against the medical community. And, in the end, it is death that will be victorious.

The ability of humans to end their own lives has been around since the beginning of the species. There are stories of how at times of food shortages older Inuits would "drift away" on icebergs in order to ensure that, through their deaths, the younger members of their families would have enough food to survive. Suicide has also been proven in tribes going back thousands of years. The discovery that certain berries had lethal effects was used as a means of humane euthanasia for people who were very ill or badly injured.

The morality of much of the medical establishment hasn't evolved to take into account the quality of life for those who are dying. Whether a doctor sits quietly by at a patient or family's request and doesn't treat a disease or injury (passive euthanasia) or whether a physician administers a lethal dose of medication at a patient or family's request (active euthanasia), it is the doctor who is held accountable for the death of that individual. The medical establishment's narrow view of there being only one way to handle the dying patient--by using every last resource available to try to save her or him--has greatly hindered the quality of our deaths. Physicians are trained to believe that they have done their job only if every last measure is taken, regardless of what value this saps from the patient's quality of life. This is the model by which the medical establishment measures its success.

What is needed is a paradigm shift in the educational curriculum of medical schools. No one can place value on what any individual considers to be "quality of life" because we all have different bodily functions that we consider more important than others. What one person considers an extraordinary means of intervention, another may see as typical. Furthermore, what is extraordinary at one point in history isn't necessarily extraordinary at another time.

Just seventy years ago, the invention of insulin to treat diabetes was considered a major breakthrough. Today, millions of people are administered insulin daily to treat diabetes, and few of us would call this treatment extraordinary (though it should be noted that there are some religions which do consider routine interventions of this kind extraordinary and strictly forbidden). When my father ultimately succumbed in 1988 to kidney failure as a result of his RA, kidney transplants were somewhat extraordinary and were available for only a very few select patients. Today, kidney transplants are common and often successful.

At this point in time, extraordinary covers treatments such as ventilators, high-risk surgery with low chance of success, feeding tubes, and multiple organ transplants. It is when people are placed in situations requiring any of these that they and their families often wonder whether the treatment is worth the extra time and pain when, instead, they could die a "natural" death.

A large part of the dying process revolves around the issue of control. Like so many others, I watched in horror on September 11, 2001, as people threw themselves to their deaths from the World Trade Center towers. The ability to choose how to end their lives in such a situation was their way of controlling the situation. The only difference between them and a terminally ill person is that the people in the World Trade Center had the physical ability to end their lives and were, at the time, free from legal intervention to prevent them from doing so. They chose to die with dignity rather than wait for death to consume them.