Thoughts on Dignity in Dying Bill 2020

 

The question of whether one should be able to choose how one dies has returned to Irish political discourse with the Dignity in Dying Bill which is being voted on in the Dáil today. The bill says that if one is terminally ill, that one has no treatment other than medication that relieves the illness and that if one has the clear desire to die that they can be assisted in dying. Assisted suicide is a difficult issue which touches on many thorny issues including how do we think of pain and suffering, what dignity means, how this affects how one thinks of being disabled, elderly and mental health.

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 One of the critical questions to this debate is what does dignity mean? Does dignity include a good death as the term euthanasia suggests? Like so many terms today it is critical that we define exactly what dignity means because today dignity is used mainly in two ways which makes dialogue difficult in this area. Labour leader Alan Kelly in his support of the bill said, “Now there is a public mood as regards giving people their dignity and that is why the Labour Party is supporting this legislation.”[1] The idea of dignity, that Kelly and many who argue for assisted suicide, is using is an understanding where dignity can be lost. Unlike the other understanding of dignity, the emphasis is on individuals’ sense of whether they have dignity and their autonomy. There is a danger with this understanding of dignity because it can be linked with one’s abilities. The author Terry Pratchett, who had Alzheimer’s,  in the documentary “Choosing to Die” (2010) said that “When I can no longer write my books, I’m not sure that I will want to go on living.”[2] Pratchett’s view is in many ways very understandable, how many of us feel that we want to be giving to others what might be regarded as the best of us. But there is an element in this understanding of dignity of ableism because our dignity is linked with our capacities. This ableism may not come from anyone outside of the individual, but it is still full of expectations about what means that one is worthy of the concept of dignity. As a disabled woman, I understand that it is important to affirm the autonomy of people with disabilities who so often are paternalised, but I cannot say that assisted dying helps in that respect. The other understanding of dignity which is used in human rights law and stems from Kantian and Christian ethics is that dignity means that humans are never to be used solely as a means. It assumes that all people, regardless of who they are, what religion, what their abilities are, possess dignity and it is inalienable. Dignity is to be assumed; it cannot be proven as it is a transcendental concept, like human freedom. Dignity is not a quality that we may or may not possess, but we are able to interact with people in such a way which speaks to their dignity and we need to really think whether assisting someone with their death is such an action?

 

The bill does not use the term consent but instead says that they have “made a valid declaration to end his or her life.”[3] It is important to consider that while consent is an important principle that there are reasons to recognise that it is not without flaws. In bioethics, it is expected that there will be informed consent, which is meant to protect people’s decisions so that with the knowledge provided by medical officials, one can reflect and make a choice. But people can be swayed by medical officials, to fail to grasp the consequences or the medical information and importantly, be influenced by other factors. I think in this argument most of these factors, like grasping the medical information and consequences, are ruled out but it is important to ask are they influenced by other factors? If one looks at another area of end of life care advance care directives, there is no recognition of what people might want in a positive sense as it is not viewed that there is a right to healthcare and therefore, the content is focused on orders such as do not resuscitate. But in countries like the United States, which I would argue objectively has a terrible health care system, where these advanced care directives are more common, it seems clear that there is the question do people really happy to die sooner or that they feel the pressure to not want to burden their family with the cost of care? I am not saying that it is the only reason, but we must be honest that people are influenced by their financial situations. As a result, it is vitally important that we help the elderly not to feel that they are a burden, that we make palliative care as accessible for as many people as possible so that it is nor a luxury and the family of those who have family in palliative care can take time so that they can spend time with their family. Being with people, even if they are not cognitively aware is not a waste but is in fact valuable. There are other concerns in relation to assisted dying which makes consent a problem, this may be a result of depression. Medical literature shows that 25-77% of that people with terminal illnesses have depression.[4] The fact that that people are clearly suffering and pain does not mean that we should be treating their depression and thoughts about suicide in a completely different way than other people with depression in the sense that we legitimise one group’s but not the other. Very few of us argue for complete autonomy, recognising that we can consent to things which are wrong and one of the main reasons to restrict autonomy is when it will harm people. We cannot simply accept things on the grounds of choice.

 

It is hard not to be aware that I am writing this in the time of Covid-19. When Covid-19 shut down the world back in March, there were many articles about how it would change the political landscape. It would lead to a society that emphasises more the importance of healthcare, that it would lead to a world that would be more accessible for those of us with disabilities and we would learn to see ourselves not as independent individuals but as people who are interconnected and that we need to lean on each other and care for each other. It is hard not to be cynical about this as one listens to people complain about the restrictions and the desire to return to normality, but I do hope we can be a better society. As someone with a disability, it can be a struggle to accept the ways that I feel dependent on others because that is not the norm and I hate the idea of being a burden. But the reality as disability rights activist John Kelly from Not Dead Yet has pointed out is that “we’re all interdependent, whether or not we acknowledge it.”[5] I would love if after Covid, independence is seen as a myth and that we attempt to accept others help as well as offering others support, that we can share with each other our struggles and suffering. I acknowledge that helping your neighbour buy food during lockdown is different to helping someone to go the bathroom or change them, but if we are to create a society that has space for people with disabilities and the elderly, we need to be open to being in uncomfortable situations. We need to treat people with dignity and that may mean helping your grandmother change her clothes. The Death with Dignity Act Report 2016 cites reasons for assisted suicide were “loss of autonomy” (92%), “less able to engage in activities” (90%), “loss of dignity” (79%), “loss of control of bodily functions” (48%) and “feelings of being a burden” (41%).[6] In an article on assisted suicide, Dan Diaz said, “If I find myself in a situation where I can’t go to the bathroom on my own, where someone has to change my diapers, where I can’t feed myself, where I can’t care for the people around me, where other people have to move me around to keep me from having bedsores, I would then submit, ‘Is that really living?’”[7] We need to affirm each other’s dignity, be willing to create a society where our understanding of what counts as living includes people with disability and those who are elderly. Covid-19 might change our understanding of the human person for the better, but we cannot accept the anthropology of assisted dying because it is ableist.

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[1] https://www.rte.ie/news/politics/2020/0914/1165121-politics-dying-dignity-bill/

[2] https://www.irishcatholic.com/terry-pratchett-and-the-right-to-die-debate-greg-daly/

[3] https://ionainstitute.ie/wp-content/uploads/2020/09/Dignity-in-Dying-PMB.pdf

[4](Note this article is from 2001) https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1291326/

[5] https://theminimiseproject.ie/2020/09/06/notes-from-the-rehumanize-conference/

[6] https://www.oregon.gov/oha/PH/PROVIDERPARTNERRESOURCES/EVALUATIONRESEARCH/DEATHWITHDIGNITYACT/Documents/year19.pdf

[7] https://www.washingtonpost.com/national/health-science/death-with-dignity-laws-and-the-desire-to-control-how-ones-life-ends/2016/10/24/6882d1e6-9629-11e6-bc79-af1cd3d2984b_story.html