Humanist Perspectives: issue 153: Information and Personal Autonomy

Information & Personal Autonomy
by Gary Bauslaugh

xray of human skull provided by Adam Ciesielski

In our last issue, The Trial of Evelyn Martens, we tried to bring much-needed public attention to current laws on assisted suicide and euthanasia. These are important legal matters, but they are also significant and controversial ones in medicine. Physicians are regularly faced with life and death decisions and, sadly, this sometimes puts them at risk. Though legal sanctions in cases of abortion have been eliminated, thanks to the heroic work of Henry Morgenthaler, doctors are still vulnerable to the wrath of some anti-abortionists, who wish to impose their own will on society, whatever the law says. And in the case of right-to-die issues doctors are legally vulnerable as well.

The Martens case narrowed the parameters for determining what constitutes assisting suicide, but still left open the possibility of prosecution of anyone, including any doctor, who actively participates in any way in causing a death. This means, for example, it is illegal to turn a valve to increase levels of a pain-relieving agent, such as morphine, in order to cause death. It is not illegal, though, to cause death by turning another valve the other way, to stop treatment (if requested by the patient or supported by the family if the patient is unable to communicate.)

This fine distinction between turning the valve one way or the other is held by many people, including many doctors, to be of major significance. It is argued that one of these actions is acceptable, while the other is not. Bob Lane argued convincingly in the last issue of Humanist in Canada that there is no real moral difference between these actions. But one who administers a lethal dose is subject to extreme legal sanctions, while another who achieves similar results by stopping treatment will suffer no legal consequences.

Doctors have invented a way around the legal problem: it is called ‘palliative sedation.’ Some will give lethal doses of morphine, but say they are doing it because that is the level of the drug necessary to alleviate pain. They say their intention is pain mitigation, not death, so they feel legally and morally justified. This is a dubious solution, though, one that under current legislation could still lead to prosecutions. And it continues to hide the real issue, which is the need to deal with the right to die in an open and rational manner.

The current situation is cruel and unfair — both to doctors who because of fear of prosecution are forced either to deal with these matters surreptitiously or to ignore the heartfelt wishes of some desperately sick patients, and to those who, would prefer to choose how, when and where to die. This is a manufactured problem, and as such can be changed — by changing the law.

The theme of this issue is Medicine & the Informed Patient. Until our archaic laws in regard to assisted suicide and euthanasia are changed, patients need to be fully informed about their rights. They need to know about the availability of ‘do not resuscitate orders,’ living wills, advanced directives, and any other means available to ease their final days. They also need to know about how to bring about death themselves, since help is not allowed. The Right to Die Society and other similar organizations have done exemplary work in this regard, even while under the threat of prosecution for merely distributing information. The Martens trial has, to some degree, mitigated this possibility.

Since the Evelyn Martens issue of the Humanist in Canada went to press we witnessed the grim unfolding of the Terri Shiavo case in the United States. If anyone ever needed evidence of the importance of taking care of death issues beforehand, here it was. Because of some degree of uncertainty in this woman’s wishes in regard to her body being kept alive, after her brain had mostly ceased functioning, her body was kept going for fifteen years in a ‘persistent vegetative state.’ There was no hope of ever recovering any brain function. The human had died fifteen years before; Terri Schiavo no longer existed. There was no chance she would ever recover any semblance of consciousness. All that was left were some reflexive automatisms which, rather like seeing visions of saints in cloud formations or tree stumps, were given imaginative interpretations by hopeful viewers.

People who knew the real Terri Schiavo kept saying she loved life, and would never have wanted to die. That was probably true, but the life she loved was a real life, a life involving, at the very least, awareness of her surroundings and the ability to communicate. That she lost even these most basic of human attributes meant that she had, in effect, lost her life fifteen years before the unseemly antics of the religious fanatics who were exploiting her case, in part as a stalking horse for the upcoming right-to-life battle over abortion. If Terri Shiavo, in her vegetative state, was a person, then what about a foetus?

The shame of all the uproar over this case is the fact that there are untold numbers of otherwise healthy children in the world who are starving to death. These are children who could lead real human lives. They could think, learn, have ideas and dreams, develop friendships, fall in love, appreciate the world around them. All of these attributes of a life worth living are denied them, not because they are in themselves incapable, but because an uncaring human community, for the most part, does not help them.

how about erring on the side of the many lives of forlorn children who could actually benefit from feeding?

If we are to “err on the side of life,” as so many of those who wished to continue feeding Terri Shiavo’s body were fond of saying, how about erring on the side of the many lives of forlorn children who could actually benefit from feeding?

This issue of our magazine was inspired by the article by Mark Battersby on The Competent Layperson in our Fall, 2004 issue. The theme of that issue was Education & Critical Thinking, and Mark’s article told the story of his sister-in-law Gail who was diagnosed with terminal, inoperable, metastasized lung cancer. She was given only a few months to live. Mark, who is a philosopher, and his wife, lawyer Diana Davidson, set about analyzing the diagnosis as intelligent, sceptical laypersons. They read cancer textbooks and other sources, including relevant articles in Scientific American, and concluded that the diagnosis was not well-validated. Rather than being metastasized, the detected cancerous sites could be independent, meaning that an operation to remove them could be successful. This, in fact, turned out to be the case, and a successful operation was carried out. Several years later Gail remains healthy.

But the autonomy of patients is a complex issue, one that we decided to examine more closely in this enlarged, special edition of Humanist in Canada, made possible by a generous grant from Heritage Canada. Is it possible for patients to be fully informed, so that they can make sound decisions? Should decisions be theirs alone? In a world full of health care fraud, rife with charlatans, how can we be sure that the information people get is reliable?

In our featured articles philosopher Carol Collier looks at some of the complex considerations regarding patient autonomy. Psychology professor and leading sceptic James Alcock examines why so many people are turning to unscientific sources for medical information. Alan Cassels, well-known for his work on the CBC, shows how misleading information is passed on to the medical community by drug companies. Dr Ted Merrill shows the difficulties of being fully informed about one’s health care, even as a physician. And eminent radiologist Giles Stevenson discusses the problem of making informed decisions in regard to the efficacy of medical screening programs.

Our columnists touch on the issue under discussion as well. Shirley Goldberg looks the recent film about Alfred Kinsey, and at how the religious right goes about trying to suppress information they do not like. Trudy Govier talks about a problem in trying to work together with doctors: they do not always listen. Jonny Diamond writes about the inadequacy of health care for the poor in the United States. And Gwyneth Evans looks at how children’s books mirror changing societal health concerns.

We hope you will find this issue of the magazine to be a useful look at the related issues of information and personal autonomy, issues that are at the very heart of humanism.