Kevin Flemen confronts a topic we all need to talk about.
A few years ago, on a training course we started to discuss death. Surprisingly this wasn’t on the drug-related deaths course, where such discussions could be expected to take place.
This was on an NPS course, and the conversation related to a worker struggling with a young person whose high-risk polydrug use and apparent unwillingness to take on board harm reduction measures left the worker desperately worried and stuck.
We discussed the idea of the young person writing a ‘what if…’ letter to their parents. ‘You think you are going to be OK,’ the worker said. ‘And hopefully you will be. But if something bad happened, maybe you might want to write a letter to your parents now. Just in case. You can leave it with me, so I could pass it on to them.’
Further down the line, the worker got in touch saying that after having this discussion with the young person they came in two weeks later, saying that they hadn’t used at all. The enormity of sitting down with a piece of paper saying ‘Dear Mum and Dad, if you get this then…’ was, for this young person, a catalyst for change.
While my initial interest in this may have started with discussions around risk and mortality as a part of motivation, it isn’t now my primary interest. Instead it’s the realisation that drugs workers should be discussing the risk (and ultimately the inevitability) of death far more than we do.
Drugs work is fundamentally an optimistic occupation. It seeks to reduce harm, reverse overdoses, promote and achieve recovery, help people reach their turning point, to change and grow, to rise phoenix-like.
But people can, do and will die. Some very prematurely, some less so. In our optimism what discussions can, and should, we have with our clients about mortality? How do we balance these discussions (which could be considered pessimistic) with the need to inculcate our services with positive messages of hope?
Many people who use drug services are isolated from family. They may not have close contact with ex-partners, their children, siblings or their own parents. Obviously this won’t be true for all, but it’s painfully true for some.
This isolation may be compounded by professional isolation – limited access to GP care, recurring episodes of homelessness, transience, periods of incarceration.
Given this personal and professional isolation, drugs workers can have a key role in representing a person’s wishes and intent regarding end-of-life care and their death.
For example, has the person considered their wishes in terms of advance decisions (living wills)? If they’d overdosed, been deprived of oxygen and could be maintained on a ventilator, what would they want? Has anyone asked them? Has it been recorded anywhere?
Beyond these discussions, does the person want to write and lodge letters for estranged family or friends? Have they considered writing a will if they have possessions they wish to pass on? How do they want their funeral to be conducted?
For some people these conversations will be much more ‘what if…’ They could take place with people who have significant risk of overdose, or who had recently experienced and survived an overdose.
For other people, with multiple, chronic and serious health problems the discussions may be less ‘if’ than ‘when’. We would have these conversations in elderly care settings. We would have them in cancer care and other serious illness contexts. We are starting to have the conversations with older dependent drinkers. But few agencies are having the conversations with older and at-risk drug users.
It’s probably worth restating the dual nature of these conversations, and introducing a note of caution. They could on the one hand be a catalyst for change. But they can also form part of a package of care for a planned and dignified death, where the person’s end-of-life wishes are known and can be respected. Workers engaging with such discussions should be clear in their own heads why they are having the discussion and the purpose of it.
In the relentlessly optimistic world of hope and recovery from addiction, such conversations may seem – literally – morbid. But they are long overdue and our reluctance to have them deprives drug users who die the dignity and rights we afford to other members of society.
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