Assumptions about unbearable physical suffering in a life limiting illness are used as a significant reason for requesting physician assisted dying. However, the reality of why people request this do not suggest that this is a primary reason.
A study in Oregon in 2022 reviewed the reasons why people requested physician assisted dying. Top of the list at 89%, was the decreasing ability to participate in activities that made life enjoyable. Next at 86%, was loss of autonomy, with loss of dignity coming third at 62%. Worryingly, nearly half of people cited the burden placed on family and friends as their reason for requesting it. Only one third of people gave symptom control, or concern about symptom control, as their reason.
As it is currently described, a person wishing to end their life with the assistance of the new, future law will need to be over 18 years of age, be terminally ill and in the last 6 months of life, demonstrate mental capacity to make the decision, and request a doctor for assistance to die.
There is no mention of how this right and choice is to be navigated without the usual resources provided for other important life decisions, with accurate information, clarity of options, and access to relevant education.
Common offerings at the beginning-of-life that help us with decisions are designed to enhance health and wellbeing at this time of life – family planning, sex education, pre-(and post) abortion counselling, public health messaging, primary care consultation and advice.
Few of these derive from therapeutic traditions of counselling. Instead, they stem from the public health activities of health promotion – providing opportunities to share information, discuss options and choices, explore fears, identify anxieties, clarify errors or misconceptions, and reflect. And all these matters are rehearsed in confidence with someone who does not have a vested interest in any particular outcome such as a spouse, parent, or lover, for examples. We see these offerings as crucial, everyday supports in making important and informed life choices for our own healthcare.
We do not see any similar provision in current discussions for assisted dying. Not to begin planning for similar supports for the new clinical and legal offering of assisted dying would be seriously out of step with our wider public health responses to life and death. The decision to enter hospice and palliative care, or the decision to turn off life support, is never made lightly.
End-of-life literacy, as a form of public health education, is crucial in our decision-making when encountering our both own mortality and for those we love. Informed decisions cannot be made without education, discussion, and reflection.
If assisted dying is enshrined in British legislation and becomes a right, access to these kinds of public health support will be essential in making our choices informed ones.
This is the ’elephant’ in the room where assisted dying is debated. There needs to be someone placed at the footbridge between the patient who seeks assistance to die on the one side, and the location of the doctors on the other side who will assess severity of illness, prognosis, and mental capacity.
A critical friend, an existential companion, or a health promotion advocate (choose a label here) who is able to provide a crucial reflection opportunity as well as accurate information and clarity of options, will become the ‘safety net’ person for those wanting to make the decision of their life.
In the current end-of-life care world, the options are few. Clinicians from palliative care could be viewed as having a conflict of interest, while those from therapeutic counselling might be viewed as those seeking to misrepresent personal resolve or mental clarity.
The public health movement in palliative care champions citizen-participation, co-creation, and civic rights. From these ranks, we might draw our new counsellors and educators trained in the reflective and health promotion arts to support this new end-of-life literacy. At the very least, we may draw on this public health palliative care specialism to provide a national training program to prepare and then support those who wish to go into that night without rage, and without fear, safe in the knowledge that they have made the right decision for themselves and those they love, in the remaining time left to them.
And after all things are considered, and after all is said and done, we will choose our option on the basis of that support. In the end, isn’t that what we all want?
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