Who dare call it futile?

A Canadian man’s life depends on a ventilator. His relatives want to keep it on; his doctors want to turn it off.

Regarding withdrawal of treatment, we need to distinguish a doctor's 'medical decisions' from 'decisions in a medical context,' which implicate a broad range of values. The facts are an everyday reality; but they open up a complex world of competing sorrows.

Samuel Golubchuck, whose health has been deteriorating, is an 84-year-old man on a ventilator in a Winnipeg hospital. The physicians and hospital want to remove the ventilator. His family wants it continued, including for religious reasons. They've gone to court.

Justice Perry Schulman of the Manitoba Court of Queen's Bench has held the ventilator must be continued until a court can rule on the issues, which he said are "wide open," "not frivolous (legally)," and must "be decided for the good of the parties and in the public interest".

So what are the issues? In early court cases involving conflict between physicians and patients or their families about treatment, the issue was over-treatment. People were frightened of being "left at the mercy of doctors and their machines," especially when they were dying.

To remedy that situation, in cases such as Karen Anne Quinlan in the United States, Tony Bland in the United Kingdom and Nancy B in Canada, courts recognized the legal rights of patients, or the families of incompetent patients, to refuse treatment. Advance directives -- "living wills" containing the patient's instructions about treatment and "durable powers of attorney" that allowed patients to choose their substitute decision-maker if they were incompetent -- further enshrined this right.

Concurrently, ethical justifications for withdrawing treatment with consent, such as the suffering the treatment inflicted outweighed any possible benefits it offered, were articulated. And, while maintaining the ethical and legal presumption in favour of life, a language and practice of not wrongfully "prolonging dying" was developed.

The underlying principles were respect for individuals and their rights to autonomy, self-determination and inviolability -- their right not to be touched, including by treatment, without their informed consent to it.

And religion was a factor in some of these cases. For instance, a competent, adult Jehovah's Witness had the legal right to refuse blood transfusions, even though it meant she would die.

In contrast, in Mr Golubchuck's case, the conflict is about under-treatment. If we apply the same concepts and rights as those outlined above, does he -- and, likewise, would we -- have a right to demand treatment?

We've been struggling to answer. Here are some of the concepts, definitions and principles we've used so far in trying to do so.

Levels of decision-making

A physician has a primary obligation of personal care to each individual patient. The physician must not place the interests of others in front of the patient's or be in conflict of interest in making decisions affecting the patient. So saving resources for other patients at the patient's expense is unethical.

Legally, the physician must offer the patient the range of treatment that a reasonably careful and competent physician would offer in the same circumstances, which could require taking into account the patient's religious beliefs. If there is disagreement as to what that range is, as in Mr Golubchuck's case, ultimately it will be decided by a court. Although the expert evidence of physicians would be considered by the court, it is not definitive in determining that range.

If a treatment is medically indicated, it may only be withheld with the patient's (or his substitute decision maker's) informed refusal of it -- informed refusal is the companion doctrine to informed consent.

Moreover, physicians have ethical and legal obligations to inform patients about medically indicated treatments even though they are not available, which can cause very difficult situations for physicians.

Hospitals owe ethical and legal obligations to all patients, and ethics requires they take into account efficient and effective use of health care resources in order to benefit everyone. A general decision at this level can mean a certain treatment might not be available to a particular patient. But hospitals must act justly and equitably in making resources available, including not discriminating on prohibited bases, such as age.

So, while a hospital might validly decide not to install an intensive care unit, for example, it could not, as one Saskatchewan hospital did, decide that no patients would be given cardio-pulmonary resuscitation. Ethically and legally, the latter requires individual decision-making.

Futility

Futility is a vexed concept. It's used by health care professionals with the intention of justifying withholding treatment. It often hides value judgments, especially ones based on quality of life; treatment is labelled as futile in order to withhold it from people seen as having a life not worth living and, therefore, not worth the cost of maintaining it. But, even apart from other problems with futility, research shows healthcare professionals perceive patients' quality of life as lower than patients themselves do.

"Medical futility" is a narrower concept than futility that does not involve the same risks of abuse. There is no ethical or legal obligation to provide treatment that will have no effect -- for instance, give a blood transfusion to a person not needing blood. Mr Golubchuck's ventilator is keeping him alive so it is not medically futile. That does not mean the ventilator must not be withdrawn; rather, its withdrawal cannot be justified on the basis of futility.

The facts of the Herman Krausz case, in which the treating-physician turned off Mr Krausz's ventilator, are very similar to the Golubchuck case. That resulted in a 16-day, Quebec coroner's enquiry. The coroner ruled the ventilator supporting Mr Krausz's life was not "medically futile"; that he was competent and had not given informed consent to its withdrawal; and that this withdrawal caused his death.

But she also found -- somewhat confusingly and without explaining the relevance or proper application of this previously unknown concept -- that the ventilator was "therapeutically futile". That meant, she explained, the patient could not be cured and would die, whether or not the ventilator was withdrawn; the only difference was when he would die. But that's true for all of us who need medical treatment to keep us alive, and it's also true that in the end we all die.

Ethical justification

The heart of "doing ethics" when values conflict, as in Mr Golubchuck's case, is to ethically justify breaching the values that are not respected by the course of action adopted. It is these ethical justifications, not the decision outcomes in particular cases, that create the precedents that will be used in future cases. That is a major reason why they are so important.

Those arguing treatment should be withdrawn try to establish such justification first, by setting a nasty medical scene. A nurse gave evidence in court that "Mr Golubchuck had 45 litres of excess fluid leaking from his body and was rotting from the inside out." Language affects how we see ethics, because it affects our moral intuitions and emotional responses.

Another justification given is that Mr Golubchuck "does not speak or get out of bed... (and arguably) his brain is functioning barely above a vegetative state." But that's also true for many disabled people.

As well, it has been argued that Mr Golubchuck has no worthwhile quality of life and respect for his dignity requires that his life not be sustained. These are the same justifications used to support euthanasia, as is the proposition that the only ethical obligation is "to ensure he has a dignified, painless and distress-free death".

Other factors that are relevant to decision-making about withdrawing treatment, but if accepted as justifications would validate withdrawal in a very broad range of circumstances, have also been presented.

They include that Mr Golubchuck's condition has not improved; "it's rare to have survivors from such prolonged ICU stays"; "a public health-care system... does not have unlimited resources to fund ICU stays" (but that's true of all treatment); the "treatment... has been medically determined to be of no benefit (which raises the question in dispute, namely whether it is of benefit) which violates the basic ethical tenets of all health care professionals"; treating Mr Golubchuck is "painful" and distressing for him (as many treatments can be for patients); the cost of taking the case to court is a waste of taxpayers' money and the delay involved is traumatic for health care workers who want treatment stopped; and that a court cannot order treatment continued -- a stance which is legally in error.

When so many justifications are needed, it indicates no one of them -- or all of them together -- is sufficient. There are ways to justify, ethically and legally, withdrawing treatment and to do so without setting dangerous precedents, but they are not articulated above. For instance, one such is the patient's or family's informed consent to withdrawal.

Whose values should prevail?

So, bottom line, when values conflict, as in the Golubchuck case, whose should prevail, the patient's and family's or the physicians'?

We need to distinguish "medical decisions" (eg, what is the correct dose of a drug) which are properly the province of physicians, from "decisions in a medical context," which implicate a broad range of values, including religious ones.

"Decisions in a medical context" should not be the sole, or even the primary, province of physician decision-making. I propose that when patients' and physicians' values conflict in making these decisions, we should use a basic presumption that the patient and his family should prevail, unless the physicians can prove an exception should apply.

All of which is to say that the precedent the Golubchuck case could set in relation to who has the right to decide on medical treatment is of great importance to all of us as individuals, and as a society in terms of our shared values.

Margaret Somerville is director of the Centre for Medicine, Ethics and Law at McGill University, and author of The Ethical Imagination: Journeys of the Human Spirit.