Part two of our blog series on dignity in dying by palliative medicine consultant Chantal Meystre on the importance of planning for a good death.
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As a palliative medicine physician for 28 years I spend my days thinking about dying with dignity, but a clear definition of what that means is elusive
Google answers the query ‘dying with dignity’ by supplying 14 pages of sites devoted almost exclusively to: Right to Die; Physician Assisted Suicide; and Euthanasia. On page 14 there was a site dedicated to Dignity in Care. This seems to be a metaphor for the current hedonistic definition of dignity. It is undignified to be old, it is undignified to be ill, it is undignified to become dependent on others. Although we shun death, the embarrassment and shame about infirmity and suffering is lamented, even to the paradoxical point of early death being an acceptable alternative in a death denying culture. Plastic surgery thrives and our elders live in isolated loneliness fearing becoming a burden, and frustrated with the rule of law. Societal mores wrong foot us by, on the one hand being death denying, yet on the other defining a standard of dying as if it can be artlessly obtained.
One of the key ways that we allow people a dignified death is in proper planning. I believe we need to have many more conversations in our communities, get much more comfortable with talking about death and reflect on our own wishes. If people do not face the truth of their illness, and impending demise, the scramble to resolve the unfinished business of life can leave a scene like a poorly done DIY job. A young man needing symptom relief defers it to attend to his will and dies uncomfortably 2 hours later; a couple marry 3 hours after referral to palliative care in the last hours of life; and a mother refuses all symptom control until 11 hours before death, as only then was the genetic blood test obtained that may protect her daughter’s care in the future. The selflessness of these acts on behalf of family demonstrates dignity in relating, but their illnesses were not sudden onset, and acceptance of dying and consequent preparation only on the last day of life, did not allow a planned dignified ‘good death’.
Mankind has always died, and still remorselessly does but recently we have lost the words to use for it in polite society, replacing ‘dying’ and ‘dead’ with euphemisms such as ‘poorly’ and ‘passed on’. This lack of clarity potentially threatens dignity. A frequent complaint regarding end of life care is that the relatives were not expecting the death as the words used were not clear enough. We live thinking that we will never die, so when sickness strikes, and cure is unlikely, it is such a shock that, not only is the news hard for professionals to give, but on receiving it our denial defence is fractured and our mortality is discovered as a stark novel reality.
The ancients were more in touch with their mortality. Socrates, Greek philosopher cBC 470–BC 399, believed no true philosopher would fear death. Seneca wrote:
‘It takes the whole of life to learn how to live, and what will perhaps make you wonder more, it takes the whole of life to learn how to die.’
There is a danger of leaving learning how to die too late. Consideration and acceptance that we will die facilitates planning in advance, so one’s wishes for end of life care can be discussed. The benefit of sharing one’s preferences with family and professionals gives a greater chance of dying as one would choose, where one would choose, and brings comfort to the bereaved that things have gone how their loved one wished. These conversations will become more and more important as ageing baby boomers alter the demographics of the population. By 2040 a quarter of the population will be over 65 with the greatest increase being in the over 85 age bracket, as people live longer with more chronic diseases. The number of deaths will increase by 25.4% and the proportion of those deaths in the over 85s will rise from 38.8% 2014, to 53.2% 2040[1]. It seems inevitable that statutory services will struggle increasingly to meet the demand. Concerning as this is, we will not be quite on our own, but we do need to think ahead and be clear of our wishes and communicate them to family and loved ones.
So how might we address the looming care gap to ensure dignified deaths remain attainable? Compassionate Cities is a Public Health in Palliative Care initiative to reclaim the previous community expertise in caring for those dying in society from the current exclusive concern of professionals. By enabling our community we can all be ready to extend a non–professional hand to family, friends and neighbours to prevent isolation and distress in their last weeks and days.
In Kenilworth, Warwickshire, we run The Omega Course giving people, prior to the onset of illness, the opportunity to talk about death and dying in a supportive environment. We aim to demystify dying and, by community education, raise a cohort that are enabled to tolerate another’s mortality because they have thought about and accepted their own.
The personal outcomes are derived from 4 evenings looking at different aspects of the awareness and experience of death, and advance planning for it. The community outcomes derive from a day of communication skill training by roleplay, when participants’ own examples of difficulties talking about death and dying, are discussed, and options for managing the conversation are tried out by the group.
Discussing options for advance care planning well in advance allows time to think without the panic that frequently sets in once death is known to be approaching. The relief of preparation can turn the panic period into a new appreciation of living, right this minute, prepared and with that preparation communicated and agreed.
I believe that dying with dignity is dying as one would wish, as comfortable as one could be, in the place of one’s choosing, with one’s close persons prepared, provided for, and present. As with births and marriages, deaths are single events, but with a lifetime of preamble. The best take a lot of planning.
[1] Etkind et al. BMC Medicine (2017)15:102 DOI 10.1186/s12916–017–0860–2
