Why is talking about dying such a challenge?
BMJ 2014; 348 doi: https://doi.org/10.1136/bmj.g3699 (Published 06 June 2014) Cite this as: BMJ 2014;348:g3699
All rapid responses
Rapid responses are electronic comments to the editor. They enable our users to debate issues raised in articles published on bmj.com. A rapid response is first posted online. If you need the URL (web address) of an individual response, simply click on the response headline and copy the URL from the browser window. A proportion of responses will, after editing, be published online and in the print journal as letters, which are indexed in PubMed. Rapid responses are not indexed in PubMed and they are not journal articles. The BMJ reserves the right to remove responses which are being wilfully misrepresented as published articles or when it is brought to our attention that a response spreads misinformation.
From March 2022, the word limit for rapid responses will be 600 words not including references and author details. We will no longer post responses that exceed this limit.
The word limit for letters selected from posted responses remains 300 words.
It is often the duty of the junior doctor being on the shop floor to communicate with patients and family regarding end of life decisions and we are often reasonably comfortable at doing so with the increase in palliative care in the medical school curriculum. As juniors however we cannot make decisions to terminate active treatment or DNAR patients and the difficulty often lies when seniors deflect or often fail to recognise that end of life care should commence.
Competing interests: No competing interests
I don't have any problems talking about dying. In theory, my GP doesn't, as he also works in a hospice. However, it's not something you can cover in a ten minute consultation, that is, if you can get one in the next three weeks. Lack of access to a health professional just adds to the sadness.
Competing interests: No competing interests
Re: Why is talking about dying such a challenge?
Patients wanting the sort of open discussion about their impending death that Boyd and Murray advocate will have one topic denied them; taking their own life should palliative care prove ineffective. This option is important as the medical literature clearly demonstrates the limits of even the best palliative care. [1] The medical and religious establishments accept this, but contend that the suffering of a small number of individuals is a necessary price to protect the vulnerable [2],[3]. Discounting real daily suffering against hypothetical risk seems dangerously complacent without knowing the numbers involved. How small is this small number? Society needs to understand the full price it is requiring some of its members to pay for the general good.
There are to date no surveys that directly examine the frequency of such refractory suffering. However the latest National Bereavement Survey (VOICES) of end of life care in England offers a way into the question. Even in hospices, where we can surely assume that excellent palliative care is available, more than 2% of patients with pain were reported as experiencing no relief during their last three months of life. [4] Figures for poor pain control and poor relief of other symptoms in the last two days of life are similar.[5] Extrapolating from this, excluding sudden deaths and those with only a short preceding illness, suggests that at least 6000 adults would experience severe distress while dying, every year in England, even if excellent palliative care were universally available. This seems a high price for society to pay, and certainly one that requires better informed consent by the public. This level of suffering would help explain the degree of public support for the option of an assisted death, in spite of the acknowledged excellence of our palliative care services.
These figures require confirmation, and the obvious way is to undertake a proper study, to inform the public and its legislators. The risks of changing the law on assisted dying are theoretical; the daily suffering is real.
Dr Graham Winyard CBE FRCP FFPH
Dr Liza Macdonald FRCR MA
References
[1] Macdonald, E. (2013). Dying in Distress: the limitations of good palliative care.
London: The Commission on Assisted Dying.
[2] British Medical Association. (2014, June 16th). http://bma.org.uk/practical-support-at-work/ethics/bma-policy-assisted-d....
[3] Catholic Bishops Conference. (2014). Sense and Nonsense on Assisted Dying.
Department for Christian Responsibility and Citizenship , London.
[4] Office of National Statistics. (2013, July). National Bereavement Survey VOICES 2012. Q31 Retrieved from http://www.ons.gov.uk/ons/publications/re-reference-tables.html?edition=...
[5] Office of National Statistics. (2014, April 22). Relief of pain and its relationship to quality of care Table 5 Retrieved from http://www.ons.gov.uk/ons/about-ons/business-transparency/freedom-of-inf...
Competing interests: Member Dignity in Dying Board and Healthcare Professionals for Assisted Dying Steering Group