Social context

In the previous unit we focused on how you might feel as an individual. The challenge of when to continue or discontinue life-sustaining treatments is also a major social problem – and needs to be understood in the context of modern medicine and how society operates.

A series of recent books by medics highlight problems with the ways in which we confront mortality and use life-sustaining interventions.

Neurosurgeon Henry Marsh, in his book “Do No Harm”, criticises excessive heroic intervention in the acute stage following brain injury. He writes that you can ‘rarely predict with absolute certainty from a brain scan what sort of recovery the patient might make. But if we operate on everybody (as some surgeons do), without any regard to the probable outcome, we will create terrible suffering for some of the patients, and even more so for their families.’

Sometimes surgeons operate even though they know that for 5 good outcomes, 95 people may survive with very poor outcomes (which, had they known lay ahead, they might have refused).

There is a well established social movement to ‘reclaim’ death and challenge excessive prolongation of life where that is driven only by the fear of death and the feeling that it is there to be conquered at all costs.

‘Dying Matters’ is a campaign which runs an annual Dying awareness week and the hospice movement has been key here (the campaign has been run by hospiceUk since 2017). Grassroots activity has also been vital, fuelled, in part, by personal experience of witnessing badly managed end of life. ‘Death cafes’ and ‘death dualas’ are part of this, and there have been ‘death festivals’ too. For example, back in 2013, Jenny Kitzinger co-ordinated a ‘Before I Die’ festival in Cardiff – over 700 people came along to discuss grief for lost loved ones, learn about the law, discuss ethical issues, and plan for their own future. Medical organisations have increasingly taken up this issue in recent years.

In February 2022 the major UK medical journal, The Lancet, launched a report called “The Value of Death”. This resulted from 4 years of commission enquiry into how decisions were being made about life-sustaining treatment and treatment at the end-of-life. One major conclusion of the report was that there has been over-medicalisation and failures to deliver person centred care. You can see the full report here: www.thelancet.com/commissions/value-of-death. This is an important intervention which shows how mainstream these concerns have become in the 21st century and underlines the urgent need for change.

Particularly interested in neurosurgery?

If you would like to know more about the decision-making by neurosurgeons you will enjoy  listening to a lecture by Henry Marsh.

We recommend you listen to the section 16 minutes after the start of his talk (until 23 mins). This is where he focuses on decision-making. He addresses questions about managing uncertainty and why surgeons sometimes operate when the outcome is highly likely to be one the patient would not want. He highlights data showing that some interventions increase survival rates, but also increase the number of people who survive in VS/MCS, and reflects on survey data showing many brain surgeons would refuse the interventions they, themselves, perform unless the odds of a ‘good’ outcome were much better than they are.

An optional 6 minute listen – start 16 minutes into the talk, and just listen to 6 minutes from there on