TALKING ABOUT DEATH AND DYING – What are the cultural and historical and reasons for not talking about death? Today, we have a philosopher’s perspective on the silence that is seeing so many die without dignity.
A decade into the 21st century, a number of people still die unjustifiably delayed, painful, poorly supported and undignified deaths in Australian hospitals and other health-care institutions.
This happens despite considerable progress in the area of official statements and legislation designed to give greater control of dying to individuals, and to make the dying process as comfortable as possible.
The progress has resulted from the interaction of many factors, including the education, the relative secularisation and democratisation of society, and the rejection of traditional authorities (including medical paternalism).
All states in Australia have guardianship legislation that provides for substitute decision making and, in most cases, advance health directives, both of which extend individuals’ decision-making powers beyond their loss of competence.
Medical codes of ethics and clinical guidelines explicitly indicate the importance of respecting patients’ rights, goals and values, as well as good communication, advance care planning, and recognising when continuing treatment is more harmful than beneficial.
A crucial turning point
Why then, despite these developments, do bad deaths continue? And why do the conversations that need to happen prior to, and during the dying process, fail to take place? The short answer is that while important cultural forces have in recent years been challenged, they continue to exert considerable influence.
The complex interaction of a group of ideas, beliefs and practices supports a medical and social culture that, often unwittingly, and indeed, usually in good faith, continues to resist the completion of the work begun.
Western societies avoid talking about death, in part because we have lost faith in transcendent life. Somewhere deep down we know that death is really the end of existence – who wants to face that?
Ironically, the official teachings of churches don’t insist on treatment at all costs, but we have developed a general psychological and social resistance to talking about death, and seeing it as a natural part of life. This was part and parcel of life prior to the Enlightenment.
At that time, the philosopher Descartes determined, on the basis that he could doubt everything except the fact that he was doubting (and therefore thinking), that the only thing of which he could be certain was the mind, which must therefore be distinct and different from the body, whose existence he could doubt.
He therefore “split” the body from the mind, and this dualistic picture of humanity was to have enormous influence.
Despite Descartes’ philosophical doubts about the body, splitting it from the mind “released” it to those who wished to investigate it, from the church which retained sovereignty over the mind, or the soul.
The drawbacks of progress
Where once the church exerted authority over everything, science moved in to claim nature as its legitimate territory. Science and technology, including medical science and its relentless technological progress, developed apace.
But this progress occurred more or less in isolation from the soul or the mind, and from the emotions and the values that the church had retained responsibility for. This had two results.
Despite the fact that those with a belief in the afterlife may not be as desperate to cling to this one as those without such a belief, the sanctity of life continued as an important value in what initially continued to be strongly religious societies.
Second, medical practice expanded its technological successes in the absence of a balancing or integrating focus on matters of the soul – those individual values, emotions and wishes. Until recently, the idea of refusing treatment advised by one’s doctor was unheard of.
Difficult habits to break
Medicine’s traditional ethic has been to benefit patients by treating them and not “giving up”, certainly not transgressing the idea that life is sacred and ought not be brought to an end.
The potential harms in this singular pursuit have been difficult for the profession to acknowledge, in part because being responsible for death has been regarded as a far greater harm. Medicine is all about curing disease, and saving and preserving life.
Hence, the great difficulty in talking about death, in recognising the point at which treatment harms begin to outweigh benefits, and in participating at the end of life in ways that suggest any active and responsible role in death. Because this has been a matter of professional cultural anathema for a significant time, the calls for change have not produced immediate results.
Ironically, it’s intensive care physicians who have been in the vanguard of the medical profession’s internal movement for change.
One might think that those who use the highest technology to support patients would be the last to surrender their therapeutic and social power. But intensivists are more able to see the whole person, who may be harmed by further interventions after having come so far and spent so long in the medical system.
Some super-specialists, on the other hand, are focused on the organ of their speciality – the heart, the kidney, the brain and so forth – and don’t see the bigger picture.
“Organologists” know they can bring about improvements in organ function, and so they do, and there’s no need to talk about death. Indeed, to do so would imply to the patient that you’ve lost hope, and medicine traditionally is the bringer of hope. It’s certainly the case that some specialists remain loathe to refer patients to palliative care services, as this would mean giving up and failing to continue to offer hope.
Finally, there’s said to be a measure of collusion between society and medicine, orchestrated via the media’s unrealistic and unbalanced portrayal of medical progress and success.
Expectations of continuing therapeutic options in the face of overwhelming disease serve to delay the inevitable conversations crucial in developing a mutual understanding of how dying should occur.
Despite important progress, cultural forces affecting both patients and doctors continue to prevent us from talking openly about the end of our lives. Much work remains to be done.
This is the fifth part of Talking about death and dying. To read the other instalments, click on the links below:
Part Three: Curing or caring: the importance of being honest
Part Eight: A personal account of life with terminal cancer