Suffering and Autonomy at the End of Life – University of Glasgow Conference April 2018

Published on: Author: josephwood2 2 Comments

Cicely Saunders once stated that ‘suffering is only intolerable when nobody cares’. Yet suffering is a broad concept with many aspects. Members from the Glasgow End of Life Studies Group recently attended a two-day philosophy conference entitled ‘Suffering and Autonomy at the End of Life’. Speakers came from a range of academic disciplines – including philosophy, architecture, social science, and nursing – to discuss how the suffering of someone who is dying can be understood through ideas of autonomy. There was also a session on policy with Richard Meade,  Head of Policy and Public Affairs, at Marie Curie Scotland.

 

As part of my first blog for the End of Life Studies Group, I’d like to pick out a few of the sessions which I thought were particularly valuable or provocative.

 

Our own David Clark opened the conference with a discussion of some of the approaches used within our team. He started by talking about how palliative care is often very good at dealing with individuals through its emphasis on person-centred care, yet often it lags behind when trying to make larger scale interventions such as policy changes or structural improvements. David described how we are currently thinking about the different levels at which palliative care functions in terms of micro, meso and macro. Palliative care attends to the micro dimensions at an individual level and is capable of looking at statistics and making wholesale changes at a macro level. However, there is little research that tries to help link these two levels by thinking about the meso level of smaller scale social interventions. David then introduced the team’s own taxonomy of interventions and framings at the end of life (available open access here) which tries to suggest ways that decision makers can think about making changes in palliative care by incorporating local considerations into a more reflective wider approach.

 

Jane Clossick, from the Cass School of Architecture and Design, London Metropolitan University gave a very personal talk about her own experience of a busy London hospital when visiting her uncle John who died in November 2017. Jane’s contribution was interesting because she does not have a background in end of life care research. Instead, she brought to bear her architectural expertise about how people use space in an urban environment and showed how the space of the hospital, which is optimised for medical treatment, could have better served the caring and social needs of her uncle. I found Jane’s ideas about how thresholds within the hospital (doors, reception desks, and other less tangible barriers) mark levels of privacy very compelling. As you got closer to John’s room, fewer people were allowed to go through each threshold – anyone is allowed through the main hospital door but only friends, family and staff were allowed into his room. While this meant John could have a private social space, it also meant that it was difficult for someone with mobility issues to get out of the building and be in the world. In the discussion, I mentioned how many of Jane’s suggestions for how spaces can best serve those at the end of life are similar to the conclusions Cicely Saunders came to when she founded St. Christopher’s Hospice.

 

While analytic philosophy often focuses on assisted dying, several speakers from that field spoke about how it can be relevant during other end of life situations, including two members of the wider Glasgow End of Life Studies Network:

 

Ben Colburn is interested in autonomy, the capacity to be at least a part author of your own life. He gave four aspects that he supposed typified the End of Life (which not everyone agreed with!) – approaching death, incapacity, pain, old age – and discussed how each of these might affect your autonomy. I had an issue particularly with his inclusion of old age and the suggestion that the ‘weight of one’s life’ might stop you being able to make decisions, because I think it might equally allow you to fall back on past experiences to make informed decisions.

 

Jennifer Corns is an expert in the philosophy of pain but she wanted us to move away from thinking in terms of pain (which is very difficult to define) and to think instead about how problems can be negotiated by thinking about suffering and agency. Jennifer spoke about how we can understand suffering as being when our agency is significantly disrupted so that we are no longer able to fulfil a certain part of our identity. There are necessary trade-offs when we try to alleviate suffering: which kinds of agency should we maintain and which should we let be disrupted? My own PhD project looks at the historical and intellectual background to Cicely Saunders’ idea of ‘total pain’ which Jennifer, like some palliative care physicians, suggested could be more useful to think of as total suffering.

 

I was pleased to attend this conference because it was my first since starting my PhD in October 2017. The event was a great way for me to make connections with others working on a similar topic and gave me an insight into how certain philosophical and spatial approaches might be useful for my own thinking. I also got a chance to meet the organisers, Jennifer and Ben, who are part of our Network and I hope to work with them both in the coming years.

 

Joe Wood is in the first year of a PhD in English Literature funded by the Art and Humanities Research Council through the Scottish Graduate School for Art and Humanities, and is part of the University of Glasgow End of Life Studies Group

2 Responses to Suffering and Autonomy at the End of Life – University of Glasgow Conference April 2018 Comments (RSS) Comments (RSS)

  1. Very interesting and constructive I agree about architecture but you must include those with decades to live who are in total pain (pain is not difficult to define at all) as they suffer chronic Central pain (Central Sensitisation). There are 70 million of us in Europe so this subject needs attention I know of no UK or US sufferers who still have their agency or their basic human rights. All of us are on palliative care for life yet we are the scapegoats of the C21st as cancer sufferers, HIV Patients and Lepers were in the past. Our friends desert us as they don’t know what to say, NHS staff and police lie and assault us and we cry into the wilderness. Nobody would treat cancer patients as they do us, it is a disgrace. Please stop ignoring us and maybe try studying the philosophy of pain patient abuse because there is a lot of it going on. The science is there but services are totally inadequate and most of us have no civil rights and no agency left.

    • Thanks for you comment Ann. And apologies for not replying sooner – I hadn’t set up the notifications on comments properly.
      The architecture of places where people die is very interesting, and if you’d like to know more this blog post is a good place to start: https://cicelysaundersarchive.wordpress.com/2015/12/14/st-christophers-hospice-a-space-for-dying/
      I agree with you that holistic ideas of pain need to be spoken about more widely and that those with chronic pain are bound to experience the multi-faceted pain experience that Saunders is talking about when she talks about ‘total pain’. Partly, I hope that my own PhD study on ‘total pain’ helps to get conversations like that going.
      In terms of defining pain, I meant it is hard to define within the constraints of analytic philosophy. Cicely Saunders herself wrote the following in 1982: ‘Pain has always been a difficult word to define. The definition, “it is what the patient says hurts,” is clear and simple but not adequate unless we are ready to pick up communication of distress and suffering in ways other than what the patients say directly. We must be ready to appreciate the complexity of what they are enduring’ (from Medical Clinics of N. Am, Vol.66, No.5). I would add that the ‘it is what the patient says hurts’ idea is also not adequate unless doctors are able to listen to and to really hear what their patient is saying.
      I also agree with you that more work certainly needs to be done in exploring what is going on in encounters between chronic pain patients and doctors when two understandings of an experience of pain interact, and how we can facilitate better discussions and treatment of those who, as you say, feel they have no agency left.
      Thanks again for your comment Ann,
      Joe

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