Will Cairns: A natural end

MANY years ago when I was starting out in palliative medicine, I went with an oncologist to visit a youngish woman who was rapidly deteriorating as a consequence of her advanced cancer.

I saw a clear but quickly masked flash of horror cross the face of her husband when the patient said she would be willing to sell their house and spend every last cent they had on anything that offered her even a remote chance of a cure.

The prospective widower knew that he would never be able to bring himself to refuse her wish, but the couple had two peri-adolescent children and he was preparing himself for the role of a single parent. He knew his wife was dying and that life would be a struggle. He had immediately recognised that it would be made very difficult indeed if he and their children had no house and no money.

This case, de-identified by time, raises an issue that is virtually impossible for families to raise themselves — the wide variety of burdens that are borne by families as a consequence of the partial successes of modern medicine in delaying dying. It was raised in last week’s Four Corners on the ABC in an episode titled “Buying time”.

As well as the direct financial costs to families, there is the prolonged disruption of being  unable to continue on the course of their own lives while the patient’s life is extended, sometimes by years of inexorably diminishing quality.

Whenever we deploy expensive technology in health care we divert resources away from long-term community necessities such as education, infrastructure and the maintenance of the environment. If we persist in a never-ending quest to delay dying we may find we have squandered the chance to invest for the future of our offspring.

Obviously there are benefits for patients, their families and the community from interventions that prolong an active and independent life — they are self-evident and generally acclaimed by all.

Less often do we discuss downsides when interventions extend the dying process The emergence of this issue in the past 50 years or so is a challenge to our community values.

Until the middle of the 19th century life expectancy was low — you got sick, you got better, or you died, and there was little that could be done to stop nature from taking its course.

Families did not want those they loved to die and grieved deeply, but they were less likely to be surprised by death. The rapidity of death in all age groups meant that they were able to mourn and then move on with the necessity of making a life for themselves.

Things are very different in the 21st century. We have constrained the vast bulk of the diseases that killed children and young adults, and are left to die mostly of the degenerative diseases of old age like cancer and heart disease. However, as a community we continue to approach these diseases with the same paradigm of organ-system problem-based management that brought us success in the past.

Our medical training has encouraged us to focus on the immediate ailment at the expense of careful consideration of the patient as a whole. At the same time patients, their families and the community have learned to view the clinical state of ageing and degeneration as a physiological and anatomical problem to be solved.

The consequence of a problem-based approach for the frail (usually elderly) patient and their family can be a long and drawn-out death characterised by cycles of anxiety, fear, hope and uncertainty. For some conditions, where patients may be suspended at the brink of death on a number of occasions over several years before they die, the process may be akin to prolonged torture.

Patients may find it difficult to express their preparedness for death. Families can be bound up by the strength of their emotional bonds and sense of obligation — they cannot move forward and they cannot go back. They often feel unable to vent their distress, or even perhaps to acknowledge it to themselves, because to do so would be considered a betrayal of their obligations and be seen as heartless, unfeeling or self-centred.

Our biological and social evolution has not prepared us for prolonged dying and unrequited grief as an unforseen consequence of modern medical care. As a community we find it very difficult to discuss limiting the availability of health care that might delay dying.

It is time to accept that death in old age from degenerative diseases is normal and inevitable, and to acknowledge that, at times, even younger people will die.

I will always remember that look on the husband’s face as a reminder that the way we approach death has consequences that extend beyond the patient, with repercussions across families and down generations. I have also seen the faces of those who, while they may be sad about loss and separation, go peacefully to their death, accepting of its inevitability and reflecting on the life they have led.

As a community we can — in fact we must — re-learn to accept death as normal and stop spending vital resources on burdensome treatments that, with little or no benefit, delay the inevitable. It will take fine judgement, careful thought and open discussion about our values.

We might then understand how better to live life to its normal and natural end.

Associate Professor Will Cairns is the director of the Townsville Palliative Care Service, Queensland.