9 July 2015

The issue of end-of-life care is on the agenda again. I am not one who believes that doctors should be able to kill terminally ill patients, but then I doubt many New Zealanders do either. In any case, the issue is far more complex than that, which is why a wider inquiry is justified.

All of us who have experienced the pain of watching someone close to us suffer a lingering and often painful death have felt the anguish and powerlessness of wanting to do more to help, but being unable to do so. We have admired the dedicated and compassionate efforts of those involved in palliative care and know of the medications now available to ease pain and make the last stages of life more comfortable, and are hugely appreciative of that.

But, at the same time, we are becoming more aware that end-of-life care is but one aspect of overall health care. Advanced care planning, where people discuss with family at earlier stages of life what their expectations are when they become old and/or frail or suffer from a terminal illness, is becoming equally important. Similarly, understanding people’s expectations is also a significant consideration as well. At a time when the bulk of health spending occurs in the last five years of a person’s life, are we certain that is what they want, or do they simply want a dignified, managed exit?

Medicines management is another factor. For years now it has been an open secret that doctors manage the demise of terminal patients through adjustment to medication levels to ease suffering and assist gentle death. Nor is it a new practice – King George V’s doctors reportedly managed his death nearly 80 years ago so that it could be announced in the morning papers. But doctors managing life as it ebbs away is different from actively securing its end.

Nevertheless, the moral argument about the sanctity of natural life and that no-one has the right to interfere with it begs the question somewhat. While I have sympathy with that view in an absolutist sense – hence my vehement, unwavering opposition to capital punishment – I acknowledge that in many terminal cases, it is questionable (as a consequence of medication and other life support measures) whether a patient is actually living a natural life any more. Therefore, the morally absolutist argument may no longer be relevant in all cases.

And then there is the question of free will. I was always taught that the most precious gift we possess – which defined us as human beings – is free will, the right to be able to decide for ourselves. Any debate about the end of life cannot overlook this fundamental point. What a patient “wants” should rank ahead of what “we can do” for the patient in such circumstances, provided the patient’s decision is rational and informed, which brings us back to the advanced care planning argument. In such instances, do the rest of us have the right to override a patient’s wishes? Providing a patient who requests it with the means to end life in such circumstances is arguably different from another person deliberately ending that life. The ultimate recognition of free will is, after all, respecting people’s exercise of it.

A public discussion about all these issues would be welcome and timely. Ideally, an independent expert panel should be established, with a wide-ranging brief to consider and advise upon all aspects of end-of-life care and how it should be managed. This inquiry should undertake widespread public consultation leading to the presentation of full and thorough recommendations to Parliament for action. For its part, Parliament needs to show its willingness to both lead and respond.