DEAR LIFE

Correspondence

Rodney Syme

Dear Life is described as “moving and controversial,” and this is certainly true. The essay is littered with wise observations. Karen Hitchcock comments succinctly on the morbidity of multi-prescribing (very common in the elderly) and the difficulties of prognostication (predicting outcomes). This is particularly difficult in the frail aged with multi-system disease; such situations can be likened to a “house of cards” – once one card is disturbed, the whole structure may come toppling down, seriatim.

Hitchcock illustrates her points with anecdotes relating to patients she has treated. They are very moving, but unfortunately too brief to allow critical assessment and analysis of the outcomes. Moreover, anecdotes are not evidence; they are merely carefully selected episodes to support an argument, and may be ignoring many other anecdotes. One could be critical and ask: where is the research evidence to support this thesis? This would be unfair, because there is almost no research done in this area, and there is an appalling lack of research as to what treatment or care the frail elderly want.

Many of the anecdotes are intriguing – to my mind they both support and deny the thesis. Some are just examples of very bad medicine practised by junior doctors. One of Hitchcock’s early experiences is with Eric, in and out of hospital regularly with heart failure because he would not comply with his treatment. Hitchcock discusses further treatment with his wife, not with him, and reaches the difficult decision to stop treatment. The decision might have been easier if she had asked him. This theme recurs with George, admitted from a nursing home with a treatable chest infection, and a slow pulse, for which it was suggested he might need a pacemaker. Although he had mild cognitive impairment, which would not necessarily prevent him making decisions, his daughter was asked for the definitive opinion; the pacemaker was placed, despite his son-in-law stating that George had often indicated that he wished he were dead, an opinion the daughter had not heard. Regrettably, people do not always communicate effectively, and are not encouraged to do so.

A critically important story is that of Fred, recently bereaved of his wife and his dog, who was sent to hospital against his wish by his GP, with respiratory problems. Fred wanted to die. Hitchcock sat down and talked with him. She arranged to get him a new dog, and to find local spots where he could fish. She supported him, and he went home, rejuvenated. Fantastic treatment, and based on communication and dialogue, a very inexpensive form of medicine – except that it takes time.

And this, to me, is the missed opportunity of this essay. Hitchcock was dealing, as a hospital physician, with many problems that might have been easier if there had been good prior communication on the part of the GP: discussing with frail patients, and patients with potentially terminal illnesses, what treatment they wanted, and providing them with the reassurance that refusal of treatment would be met by effective palliation. In the absence of clear refusal of treatment, the default position of the medical profession is to treat, and such treatment may well be unwanted and futile. Nursing-home patients are lucky to be seen briefly once a week by their GP, and if an apparent emergency occurs, they are unlikely to visit; the ambulance is called, and the problem dumped on the emergency department with little information. The effective way to avoid unwanted treatment, or to receive treatment if it is wanted, is to have effective communication based on good information. Just as immunisation for infants is a fundamental discussion for GPs with young mothers, end-of-life discussions should also be fundamental for all older patients with their doctors, and they should be ongoing as ageing progresses, because, as Hitchcock points out, our opinions can change as we age.

Notably absent from the anecdotes is any sense of the acceptance of death, a prerequisite to a good death. Too often we read of “fear of death,” and “not wanting to die” – of a lack of preparation for the inevitable which, with sensitive communication, might have been addressed.

Currently there is an assumption that the costs of caring for our frail elderly will skyrocket as the community ages over the next thirty years. This is based on the assumption that people want the care that is currently offered, and will continue to do so. How do we know, if we do not ask older people what they want? Currently we tell them what they will get. Most people do not ask to go into an institution, they end up there by default, in much the same way that many end up in emergency departments having treatment they might not want – or they might, the vital point that Hitchcock makes. We sometimes deprive the frail elderly and show them disrespect by not involving them in decision-making. Given that many may gradually lose the capacity to make their own decisions, it is vital to assist them to make sound medical directives for treatment of future conditions. Hitchcock rails against vague health-care plans, drawn up by non-medical planners. They are often ill-defined requests for consideration of “values” in decision-making, not specific directives for specific circumstances. So long as a person can communicate, the directive is unnecessary, but if they can’t, and never will, it is of the utmost value in preventing unwanted treatment.

The penultimate section of Hitchcock’s essay is titled “Death.” It contains two anecdotes: one about Hitchcock’s grandmother, who died peacefully in hospice, and the second about the mother of a physician (with a medical husband and nurse daughter), who is dying at home with palliative care involvement. Of this process, the physician mother said, “It was enormously distressing, to cope with the physical supports she needed … as well as the emotional support to her and each other. She was terrified of dying and suffered great psychological and spiritual distress … [it] was a terribly exhausting and traumatic experience.” This is very sad and, by anybody’s reckoning, not a good death. Yet Hitchcock mocks the concept of a good death. She cites the Grattan Institute’s twelve criteria for a good death, six of which relate to control and three to information and knowledge, all of which can be provided if one embraces the concept of hastening death to relieve intolerable suffering. Hitchcock responds with, “the only way we could come close to meeting all these criteria for a good death would be to put people down when they reach a predetermined age, before the chaos of illness sets in.” Such hyperbole and exaggeration is all too frequent in this essay.

Nevertheless, Hitchcock does us all a service in raising these difficult matters, and critiquing many problems in current medical practice, particularly the potential to deprive the frail aged of care by means of ageism and the concept of futility.

Rodney Syme