I have lived my 65 years at the vanguard of a generation that writes its own rules. From birth to marriage to death, we baby boomers have a reputation for doing it our own way. At the height of our reproductive careers we reached eagerly for such medical breakthroughs as the contraceptive pill while bearing witness to landmark court decisions like Roe v Wade. Both the invention and the decision changed the landscape of our lives and loves. Today our daughters and sons continue to enjoy the legacy of feminism’s hard-won battles.
Not long after came the advent of no-fault divorce. As the lead beneficiaries, we struggle to imagine a time when we could not move from one relationship to another. Of course, stress and heartache are part and parcel of love gone wrong. The point was that the law was on our side in a way in which it never was for our parents. Society’s moral panic around the family unit subsided as we realized the end was not nigh when two people decided that a long marriage was not necessarily a happy one.
And now, in our retirement years and beyond—having witnessed the older members of our families pass on in ways that are neither dignified nor becoming—we are writing a new chapter on how we might go, when our time comes. Increasingly we know what we don’t want. Working out what we do want on a subject as taboo as death and dying is the challenge that lies ahead.
Professor Ball argues that physician assisted dying and its advocates were products of the medicalization of death. By being brought into the profession of medicine, the dying process became subject to an industry involving specialized fields of medicine (palliative care), specialized places to die (hospices), specialized duties of medical professionals (compassion and assistance) and specialized laws that sanctioned assistance to a very select, small group of patients (the terminally ill).
Ball is right to insist that whereas a century ago we were likely to die quick deaths as a result of acute illnesses or accidents at a much earlier age, in the 21st century an expanded old age means prolonged periods of ill health and a lingering on as medicine practices its heroics in extending our appointed hours. But is this what we want? And what does it mean to suggest that physician assisted dying is our “final choice”? There are two main factors which intimate the road ahead.
The first of these concerns the decriminalization of suicide. In most of the western world, the 1960s saw the erasing of suicide from the statute books. No longer was it a crime to take one’s own life. While the stigma continues today—she must have been depressed or desperate or both—the legal censure has vanished. No longer is the failed suicidee punished by the state. No longer are their possessions or estate confiscated or their family penalized. Kill yourself if you like, and the state has little interest. While suicide continues to be largely perceived in a negative light, the emergence of a discourse in which suicide in the context of old age and/or illness is a rational, understandable action of an independent-minded person is as confronting as it is paradigm-shifting.
The second factor that has informed my own work in this area as an activist, scientist, and physician has been the glacial pace of legal reform in the area of physician assisted dying. In 1996 in Australia I became the first physician to administer a lawful, voluntary lethal injection to four of my dying patients. While Australia’s Rights of the Terminally Ill Act only lasted nine months before being overturned, the life of the legislation gave glimpses into a future that could be both positive and negative.
The pros of course were that terminally ill people could get medical assistance to die. This gave peace of mind to an entire nation even though—as is the case is Oregon and Washington—extremely few would ever use such a law. The elderly and the seriously ill were comforted in simply knowing that the choice was there should they ever need it.
On the downside were the tight qualification procedures that had to be met. Such safeguards surround and regulate any law in this area. Their varying degrees of stringency are the product of delicate negotiations in the final moments before enshrinement into law. Generally speaking, where end of life choice laws are concerned, a person must be terminally ill (with a prognosis of death no more than six months out), of sound mind (certified by a psychiatrist), and be aware of their palliative care options (understanding their choices in regard to modern medicine’s current palliation practices). Furthermore, the patient’s request for assistance must be repeated. A mandated cooling off period is common, just in case they change their mind. For a seriously ill person, fulfilling the above can amount to the equivalent of climbing Mount Everest.
While some might accept the qualification processes and mandates as their lot—especially if they are worn out from a long battle against their disease—others find it nothing but an affront; indeed, they may ask whose life and death this is. It is this latter group—folk of independent mind and will—with whom I now mostly work. These vanguard baby-boomers ask, what is the purpose of involving the law if suicide is legal? Concomitantly they ask, why involve a doctor if information about how they might die peacefully and reliably is known to them? If the science is accessible and the means to make it real are at their disposal, then whose business is this? I’m not committing a crime. And I’ve no need of cure, so why the white-coated med school graduate? I have to agree: why indeed. Is this not the culmination of one’s constitutional right to liberty?
Continuing to look to the physician as the arbiter, not only of who qualifies for PAD legislation, but as the provider of expertise concerning which drugs to take and in what quantities, reinforces the medicalization of death and dying. The science of a good death is not medical. The experience of dying is as much a social and cultural one as it physiological and lived on and in one’s body. To retain medicine as authority in dying is a phony ‘final choice.’ The delegation of decisionmaking to an authority figure might have suited previous generations for whom social revolt was anathema. But this has never been the baby boomers’ style. So why would we start now?
As long as the science of ‘self-deliverance’ is tested and trustworthy, and as long as suicide remains a lawful choice, concerns when new laws might be passed and to what extent the medical profession should be contracted are misplaced. It is my life, it is my death, and it is my business.