Medicine's awkward relationship with death

24/Jun/2016

Palliative care eases the suffering of the terminally ill, but many doctors neglect it. Why? By Susanne Wenger

(From "Horizons" no. 109 June 2016)​​​

​Mr Lazaroff was in his mid-60s and suffering from metastatic prostate cancer. He had no hope of a cure, but was nevertheless subjected to two operations. Two weeks after the second, he died in intensive care. "If he was pursuing a delusion, so were we", writes the American surgeon Atul Gawande self-critically in his book 'Being mortal'. "We could never bring ourselves to discuss the larger truth about his condition or the ultimate limits of our capabilities, let alone what might matter most to him as he neared the end of his life".

Relief – the primary concern

This is where the concept of palliative care comes in. Instead of trying to extend life at any cost, its main therapeutic goal is different: giving the terminally ill the best possible life in the time they have left.

In Switzerland, the federal government and the cantons only set up a national palliative care strategy in 2009. Terminal care is still a young academic discipline here. The first chair in palliative medicine was only created in 2011, at the University of Lausanne. Since then, four further chairs have been created: an additional one  in Lausanne and one each in Geneva, Bern and Zurich – the last of these being at the Theological Faculty.

Things are changing, and yet until now supporting the terminally ill seems to have been neglected, even stigmatised in the medical world. It has been a separate field, only brought into play when a patient is deemed to have exhausted all other possible therapies. "Our field is the enemy of curative medicine: dying", explains Stefan Eychmüller, a professor of palliative care at the University of Bern. In the highly specialised field of medicine, healing is the only goal, and death is often regarded as mere failure, a defeat.

Countering fantasies of omnipotence

It's thanks to the impressive progress made by curative medicine that our life expectancy has almost doubled. But medicine sometimes seems to imagine itself to be omnipotent, says Gian Domenico Borasio, a professor of palliative care at the University of Lausanne.

By contrast, palliative medicine accepts that medicine can't heal every disease. It asks uncomfortable questions: is everything meaningful just because it's possible? "Too much treatment at the close of a life is a huge problem in our health system", says Borasio. Not just ethically, but also financially. It's not just doctors who are responsible for this, but society as a whole. It's a fact that excessive treatment allows a lot of money to be made. The Swiss health system "is organised on a business model", confirms Eychmüller. A dying person who refuses expensive medical procedures soon becomes a negative cost factor.

Spiritual care is needed

It was only recently that palliative care was established as part of a doctor's general training programme. Often it's equated with mere pain therapies in the dying phase. According to Borasio, however, it's about "a lot more than just morphine and holding hands". The control of physical symptoms, such as pain and shortness of breath, is only half the story when it comes to the clinical reality. The other half is just as important: psychosocial and spiritual care.

Doctors are afraid of accelerating death by prescribing morphine. But the life-shortening effect of it "is generally overestimated", as the Swiss Academy of Medical Sciences notes in its guidelines on palliative medicine. There are other interventions that also require doctors to weigh up different factors, adds Eychmüller. "The seriously ill can also die from an emergency operation or from an experimental chemotherapy that was intended to alleviate their suffering".

At the end of a life, collegial teamwork is needed that goes beyond the usual hierarchies. Doctors work with experts in the fields of nursing, psychology, social work and pastoral care. Research, too, has to cross disciplinary boundaries. However, because medicine is oriented on principles from the natural and technological sciences, anything that doesn't fit the usual course design runs the risk of being ignored as 'soft data'.

"We still have to develop a common language in palliative research", says the theologian Simon Peng-Keller, a professor of spiritual care at the University of Zurich. As part of the National Research Programme 'End of life' (NRP 67), he investigated the strong images experienced by people close to death. Fear is a topic here, but so is trust. Spiritual care is especially important in the case of limiting illnesses: "Questions of meaning arise. People want to be perceived as a whole person, also by their doctor". Peng-Keller has discovered "a gratifying openness" among his students, both those in medicine and those in theology.

Life-extending care

In recent years, two studies from the USA and Japan have shown that the terminally ill who are given palliative care live just as long as those who are given the usual chemotherapies – and in some cases even longer. And they enjoy a better quality of life, too.

Such findings, says Borasio, help to bring palliative care from the margins into the centre, and allow medicine as a whole to be designed in a more patient-centred, communicative fashion. This would seem to be becoming ever more important, given that people in Switzerland often refuse life-extending measures. But not all doctors include their patients and their environment in their decisions, as shown recently by a study that was conducted as part of NRP 67. According to its co-author Georg Bosshard, a geriatrician at the Zurich University Hospital, we have to expand this comprehensive concept to encompass the growing number of chronically ill people.

To be sure, even palliative medicine doesn't have any generally valid criteria for a 'good death'. Dying is as individual as living, says Gian Domenico Borasio: "The goal is to allow every person to die their own death". Some decide in favour of assisted suicide because it is the right way for them. "But when people are given expert palliative care, only few of them choose that way out".

 

Susanne Wenger is a freelance journalist in Bern.

Palliative care according to the WHO

"Palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual".