When to withhold treatment - Terri Shiavo

For well over a year, Terri Schiavo’s personal tragedy has been deepened by arguments between her parents and her husband and by battles between politicians and the judiciary in her home state of Florida. Had this happened to her in New South Wales, would she have been better served? I fear not. For, though they remind health care practitioners to avoid life-sustaining treatments which are inappropriate, NSW Health’s recently-released Guidelines for end-of-life care and decision-making contain nothing to help people - patients in hospital, residents of nursing homes, doctors, nurses, family, and so on - to judge whether a life-sustaining treatment would be inappropriate. Let me explain.

The guidelines rightly point out that there is a great difference between euthanasia and assisted suicide on the one hand and lawful decisions to limit treatment on the other. They rightly point out that euthanasia and assisted suicide both involve the intention to end a person’s life. They rightly point out that euthanasia and assisted suicide may be accomplished by either an act or an omission (by doing something or by failing to do something). And they rightly point out that euthanasia and assisted suicide, as well as being crimes, are inconsistent with the duties of a doctor. But they never give a principled reason as to why some decisions to limit treatment are perfectly good medical practice and perfectly legal (or, in the words of the guidelines “appropriate”) in NSW. And so they leave open the possibility that “appropriateness” might be decided on irrelevant grounds, for example: say, what would satisfy a demanding but self-serving relative, or what would balance a hospital’s budget, or … and so on

Of course, there are various ways in which the key idea - that sometimes a life-sustaining treatment may reasonably be judged to be “inappropriate” for a particular patient - might have been explained. The one I happen to know best is found in the Code of Ethical Standards for Catholic Health and Aged Care Services (pdf file 273KB) in Australia which says that a treatment may legitimately be forgone if it either makes no significant contribution to cure or improvement or if the benefits hoped for do not justify the foreseeable burdens of treatment. No doubt there are other explanations of this idea which is intuitively known by experienced doctors. My point is that, on their own, the words “appropriate” and “inappropriate” will tell an inexperienced doctor nothing.

The explanation that I have just given, as with any sound explanation of the idea that there are proper limits to medical endeavour, needs both unpacking and application in particular circumstances. Just what are the benefits and the burdens of medical treatment in general? What are the benefits and burdens of artificially-supplied nutrition and hydration specifically? How are these things to be assessed, and by whom? In what ways do the hopes and desires and fears and expectations of individuals (and, indeed, the past hopes and desires and fears and expectations of people who - like Terri Schiavo - are no longer responsive to us) make a difference to our answers to these questions? And how should background questions about the proper stewardship of community resources enter into our decision-making as we strive to provide just and compassionate care to all those in need?

So, I am not suggesting that what is missing from the guidelines is a formula which would have automatically avoided the seemingly-intractable difficulties in which Terri Schiavo’s care is now enmeshed. What I am saying is that we could have reasonably expected these new guidelines to have given us the tools (the “principles”) to enable us to work out answers to these questions, that is, to decide, on relevant grounds, whether providing nutrition and hydration to someone in Terri Schiavo’s condition would be an “appropriate” or an “inappropriate” life-sustaining treatment.

In some ways, of course, the guidelines do advance professional standards. They remind doctors to avoid both over-treatment and under-treatment. They reinforce the individual’s (moral as well as legal) right to be truthfully informed about his or her condition, prognosis, treatment options, and so on. They state that what is central to treatment decisions, and to treatment limitation decisions, is what is in the patient’s best interests and not what is demanded by a self-serving or a regretful relative.

They encourage collaborative decision-making within the health care team and between the health care team and the family. They remind practitioners that they must not discriminate against the aged and the disabled. They encourage forward planning. And, critically, they set out useful processes both for minimising the likelihood of the kind of conflict which has arisen in the Terri Schiavo case and for resolving such conflict if in fact it does occur.

But, as I say, in spite of the fact they contain a paragraph which is intended specifically to address the issue of artificially-supplied nutrition and hydration, the new guidelines are silent on the central issue. Though they contain lots of good practical advice to doctors, nurses and others about how to ensure that the treatment provided to patients is humane, respectful, trustworthy and appropriate to their condition, these guidelines are therefore unlikely to have helped those involved in the care of Terri Schiavo.