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‘It’s the doctors who desert the dying': The changing role of the doctor in palliative care

Dying and the Dead module

This post continues our series from students on ‘Death, Dying and the Dead’, an MA history module at the University of Leeds. This post, by Rónán Cowley, focuses on debates around how much and what to tell patients about their terminal conditions in the 1950s and 1960s.

Woman in wheelchair, with Dying Matters logo

Dying Matters, the leading campaign around end of life care today, is part of Hospice UK.

Life and death, the only two certainties that will arise for every living organism. Out of the two, death is the most prominent within social culture. From books to television, from films to video-games, death is an unavoidable fact of life that constantly seems to be lingering just over the horizon. The obsession surrounding human mortality may be, in part, due to the fear of what lies beyond our earthly plane, or perhaps due to the fear of pain and discomfort (either physical or emotional) that results from the end of life. Either way, our modern society is littered with the imagery and description of death, that we probably see every day, without even comprehending it.

The increased attention placed upon the concept of death, and especially the dying themselves, is a relatively modern conception. The idea of palliative care and hospices, although incredibly prominent in modern society, arose out of Cicely Saunders' concept of what end-of-life care could and should be. Prior to her campaigning in the 1950s and 60s, death and terminal illness was seen by many as a form of medical failure, and yet now, thanks to individuals such as Saunders, the NHS are spending billions annually on cancer and palliative care.

Prior to the rise of the hospice movement in the mid 1960s, the period previously is presented by some theorists, such as David Armstrong, as the ‘regime of silence and denial’. Within this era, the role of the doctor and their relationship with the dying came under reassessment and redefinition, with many focusing on the elongation of life rather than the quality of it. If the patient was unable to recover, be it a terminal illness or one final stroke of bad luck, the concept permeating through the British medical field was one of denial. As Dr Ian Grant, a GP from Glasgow, noted in 1957, ‘after more than 30 years in general practice it still amazes me to see how few patients are aware they are dying’.

This concept was mainly in part to two factors: firstly, as previously mentioned, death and uncurable illnesses were viewed within the profession as a medical failure. Doctors during this time, rather than viewing themselves as a carer to their patients, helping their passing be as easy and painless as possible, saw themselves as medical experts focused solely on the preservation of the individual. Their job was to heal, and if they couldn’t do that, they were not doing their job. The idea of denial further permeated through the medical field into their academic literature during the period, as historians Irvine Loudon and Mark Drury comment ‘we know very little about the care of dying in general practice before the 1960s, except that its was shrouded in silence. Few talked about it, wrote about it, or were taught anything about it’.

A further factor as to why this culture of silence continued to remain so prevalent within the British medical field was that there was no obligation for the doctor to inform the individual at all; the discretion lay entirely with the practitioner. The reasons behind why doctors withheld information from the dying varied from doctor to doctor, and patient to patient. However, in his 1957 article in the British Medical Journal, Dr Grant gives invaluable insight into why the silence may occur. He mentioned that it is the role of the Doctor to ‘gauge, and correctly gauge, the temperament of the patient’ and how they would take the news. A  further concept that I personally found interesting is raised by Grant in regards to the role of ‘hope’ within treatment. He noted that ‘great tact must be exercised, and never should a case be pronounced completely hopeless - serious, yes, but extraordinary recoveries are on record, and it is only the foolish who are completely dogmatic’.

Hope is an incredibly powerful feeling, especially during times of desperation, and Grant’s concept of maintaining hope within the face of death was a stark alternative to the medical protocol of the era. At a time when medicine's desire for knowledge was subordinating the relief of the suffering and the dying, hope was very real emotion that the patient could grasp onto.

However, hope, especially for the dying, could be seen as a very alien concept. Whereas now with the rise of palliative care - end of life treatment is some of the most affectionate and emotive areas of medicine - up until the 1960s those going into hospitals faced ‘the place of solitary death’, as David Armstrong put it . The infrastructure for the needs of the individuals was not there within the British health system, and it was even worse outside of the hospital.

Two major surveys, the Marie Curie Memorial Survey (1951), and the Glyn Hughes survey (1957/58), investigated the circumstances of palliative cancer patients and general end-of-life patients respectively. Both surveys were incredibly emotive, and both called for major reforms to be enacted within the NHS to focus on the comfort of palliative and geriatric patients. The Curie Foundation surveyed over 7000 people, and discovered that just under half of the patients had no hot running water, and that 39% of them had no access to a toilet, whilst being terminally ill. The surveys commented on the levels of ‘squalor’ as well as the isolation, and pain that individuals were subjected to before their passing (bearing in mind that within 10 years of these surveys the hospice movement would have been cemented in health care). Dr Grant offered his support to reforms being made within the NHS within his article. He notes that ‘more hospital accommodation should be available’, that ‘It is wrong that so many die in crowded and squalid surroundings often with young children crying or playing in the death chamber’.

Grant’s opinions are a way of understanding the changing role of the doctor within end-of-life care. Written in 1957, right at the inception of the modern hospice movement, Grant represents the shifting conceptions held by members of the medical profession. Grant challenges the concept of elongation verses quality of life, in which he comments although ‘it is the duty of the practitioner to bring contentment and comfort to his patients… this does not mean necessarily that he should seek merely to prolong life’. Furthermore, his call for reforms and protection offered to palliative patients may look a given by today’s moral standards, but during the 1950s, when palliative care was proving to be such a controversial concept, it is vital that we reflect on the actions of all individuals who helped pave the way for the modern palliative and terminal care that means so much, to so many.