My legally blind, deaf, frail, 93-year-old father received final care at the hospice I supervised, and became increasingly helpless, bored and uncomfortable. His mind stayed clear, and on April Fools’ Day, though seemingly unresponsive, he stirred to make a little teacher’s joke to the attending nurse.
Soon after, he said to me, “Son, put me to sleep; put me to sleep for good.”
I did what was allowed. He was already receiving a small dose infusion of morphine and midazolam for his discomforts and inability to swallow predictably; the infusion was increased a little, and he slept for the next four or five days until he died. Those drugs are the powerful combination applauded by Karen Hitchcock (December 2015 – January 2016) as effective treatment for most pain. As she notes, however, requests for assistance to die often stem from “despair, loneliness, grief, the feeling of worthlessness, meaninglessness or being a burden” – just the elements of discomfort that my dear old schoolteacher dad was experiencing. Was I wrong to respond to his dying wish?
The question of what is “for good” exercises both advocates and opponents of legislation to allow assisted dying. Palliative care is universally regarded as “good” in dispelling the fear of dying, offering comprehensive physical comfort and emotional support that extends to troubled family members.
Advocates of assisted dying accept the value of palliative care, and wish to see it extended, but suggest, at the same time, that it is not good enough. The palliative approach that I affirmed in responding to my dad may be seen to bring on death more quickly (though it can sometimes extend life by days). Under existing legislation I will not face prosecution if my primary intent was to comfort and the disease was “terminal”. Should medical intent be the ruler here? How will it be assessed and measured? Most proponents and practitioners of palliative care allow no value in assisted dying. Opposition is often strident, and I find elements of this in Hitchcock’s response to Andrew Denton’s advocacy. She disdains his “celebrity”, and discounts his “expert” analysis won through eight months of wide-ranging international exploration.
Palliative care supporters argue that if legislation enabling assisted dying is taken as offering a valid alternative, it may negate the benefits of excellent terminal care and lessen their availability. There are long hospice traditions that view life as holy, a divine gift, which no person has the right to take away. Practitioners fear that an opportunity to assist dying will erode trust in the doctor, leading patients to be unsure of medical motives. Others fear a slippery slope: if assisted dying is allowed for extraordinary situations of suffering, families will encourage doctors to extend assistance to those unable to give informed consent, or to individuals experiencing disability and lesser degrees of discomfort or unhappiness.
These concerns are understandable, but not convincing. Palliative care stands strong, and education is being extended from hospices out to hospitals, aged-care facilities and homes. Death, the inevitable end for each one of us, is as much a divine gift as is life; patient trust in the doctor may well be greater when it is clear that, in situations of extreme distress, active assistance with dying may be possible. I suggest that the feared slippery slope can be avoided with clear guidelines and review by an independent medical and legal authority.
My hospice experience suggests that the opportunity to choose assisted dying will rarely be sought when effective palliative care is available. A mandatory component of any response to a request for an assisted death should be making sure that the assistance and skills of palliative care are known and can be accessed.
Again, however, it is not the classic hospice patient with advanced cancer and serious pain difficulties that presents the major challenge. It is those described by Hitchcock, who are in aged-care facilities or struggling on their own at home. Their numbers are increasing, their medical care is often intermittent, and when a crisis presents, they risk transfer to an acute hospital to die. Hitchcock calls for the provision of adequate resources from “our country’s vast collective wealth” to be directed to better care for the elderly and disabled, particularly the poor. Hear, hear!
But will it happen? I fear that only those with their own resources will find placement in top-quality nursing homes or receive expert professional care in the family home. Those reliant on their pensions or slender savings will continue to rely on frugally funded care settings, some of which may fit Hitchcock’s judgement of “disgusting”.
There is a widening global acceptance of legislation that allows assisted dying, and it seems likely to be decriminalised in Australia at some time in the future. Will it allow assisted dying to extend to those elderly with major discomforts who are not terminal?
Where do you draw the line?
The law, addressing a single event, faces difficulty in drawing a line between, say, accidental death, manslaughter and murder. Situations of dying are much more complex; circumstances and decisions are liable to change. Any action may seem sometimes wrong, sometimes right. We should not expect a clear answer or unambiguous guidelines, but hope for an informed and unhurried process, undertaken by responsible and knowledgeable persons.
I want palliative care to be part of that process. Rather than fighting a rear-guard action, I suggest that proponents of palliative care join forces with advocates of assisted dying, and with mutual respect and dialogue ensure that enabling laws are framed with a care and precision that allows no abuse and promotes best outcomes. These outcomes should include compassionate consideration for those outside the setting of major disease and imminent death.
When there is no right answer, continuing review and exchange between contending opinions are needed “for good”, and that is a good to which advocates of palliative care and of assisted dying need both contribute.
Ian Maddocks AM MD FRACP FAFPHM FAChPM DTM&H
North Brighton, SA