I thank the Chairman. I am delighted to be asked here. To give some background, as well as being a geriatrician for over 30 years dealing with people at stages of vulnerability enmeshed in networks of care, I have also been involved in the development of heath care ethics in Trinity College and in Ireland setting up the first interdisciplinary course in health care ethics, which is the standpoint I would like to come from rather than from that of the law, the law being anethical and ethics being about what it is to do the right thing through virtuous thought and action. I am also the co-chair of the medical and health humanities strand in Trinity College, which is about trying to understand what it is to be human, to be ill, to be well and to experience the health services by a broader vision through film, television, literature, ethics, philosophy and theology, this being a very important part of what we call epistemology, which is knowledge. It is important to have a broader grasp of a broader sense of the knowledge sources we need here. This is not about quantitative science or empirical studies only showing X number of this or Y number of that. It is about teasing out what it is to be human, the value we put to life and the meaning of words we use such as "dignity". Dignity is very important here.
We need to look at dignity in places where it has been stress-tested. For example, the first line of the constitution of the Federal Republic of Germany reads: "Die Würde des Menschen ist Unantastbar", which translates as "human dignity is inviolable". It is interesting that the literal translation of "Menschenwürde", the German word for "dignity", is "the worth of being human".
The importance of health care ethics is that it is a broad reach of knowledge that includes that which is good within tradition and that which is evolving. People often refer to the phrase of the philosopher Santayana that those who forget history are condemned to repeat it. However, the first part of that statement which is etched on the library of Congress is that progress, far from depending on change, depends on conservation. As the German philosopher Hans-Georg Gadamer stated, within traditions very often lies embedded an unarticulated wisdom. The reason my submission includes a quotation from T. S. Elliot is that this discussion is a new venture for us and "a raid on the inarticulate".
The reason I address this issue from a health care ethics point of view is that we need an articulacy to tease out the complexities of the care of life with disability because prejudice against disability is widespread, occult and overt and perhaps one of the motivators for the wish of some for assisted suicide. It illuminates the challenge of recognising prejudices such as those based on age, gender, race or disability in public discourse on health care and allows us the challenge of recognising what autonomy is - an issue touched on last week by Dr. Regina McQuillan - because it is being pushed to the forefront and out of equilibrium with other elements of health care virtues that are important, for example, beneficence - doing good to people - and nonmaleficence - not harming people. It is interesting that one of the earliest statements in this context is from Hippocrates, namely, primum non nocere or first do no harm. To this has been added primum non tacere, or first do not be silent, which is of particular relevance if we consider not only the silence but also the collusion of German health care professions with the T4 euthanasia programme and the role of the Swedish medical profession during the long period in which there was enforced sterilisation of people with a disability. It is welcome that the committee is allowing the professions to address it. This is by no means an extension of the bad old days of paternalism, but it is related to a broader sense of what it means to be unwell and the importance of care to our moral development, both as a people and a society. Caring is an intrinsic part of human nature and human development.
To return to the issue of assisted suicide, I am very interested in human rights, specifically established rights such as the right to life and the right to the highest attainable level of health care. Sometimes in the public domain we fret more about phrases such as the right to die than the ethical issue of the right to the highest achievable level of health care. One of the key issues in this debate is an artificial and inappropriate attempt to divide out two forms of suicide. The high level of suicide in Ireland is a major concern. While it has thankfully dipped, more people continue to die by suicide than in road traffic accidents. Suicide causes extraordinary distress. Somehow or other, we have come to a point where, within public discourse, we have bad suicide or that about which we feel sad and grievous and wish to do everything we can to prevent it. As members are aware, there are several hundred charities devoted to addressing the issue of suicide. When people wish to engage with it as a source of stress and concern, we seem to close our eyes to the fact that it is effectively the same. There are simplistic tropes that somehow or other the suicides we wish to prevent in our suicide prevention strategies are somehow irrational. We do not have to go far in the literature to see that it is not the case that people who died by suicide all had a psychiatric illness and were not in their right minds. When we are looking at strategies to prevent suicide and support and nurture people who feel suicidal or have attempted suicide and to help people to deal with the aftermath of suicide, what we are looking at are the stressors and motives that drove them to it and what can we do to support, help and sustain people.
I have been in the public domain with the Irish Human Rights and Equality Commission. It has always struck me as interesting how Ireland and England have dealt differently with human rights. The Irish Human Rights Commission has predominately been headed by lawyers, whereas the human rights commission in England and Wales was headed by a distinguished philosopher. It always struck me that the discourse at the UK body was significantly different from and more nuanced than that at the Irish commission. The decriminalisation of suicide was not intended to establish it as a human right but to destigmatise and remove any shame associated with it for the families involved and, in particular, to help those who were feeling suicidal or whose attempt at suicide had not been carried through. There was no sense of it being a societal desire to extend access to suicide as a human right. We have to keep this comparator all the way through. For me this has parallels with my work with older people and is the challenge which arises from people trying to portray negativity in later life, for example, without looking at the denominator, the classic example being loneliness. In our society loneliness peaks between the ages of 15 and 35 years, but it is constantly portrayed in the media as an attribute of later life. While we do not want people to be lonely in later life, we must view loneliness as a denominator. The idea that there are two types of suicide, one which we might consider appropriate and another which we would not, is a serious challenge and contradiction. Emerson stated an unremitting consistency was the hobgoblin of a small mind. This is not something, however, about which we are talking with unremitting consistency.
The second issue is that of an idealised vision of unfettered autonomy. What I find strange in this regard - there are a number of very helpful contributions in this area, including from Ms Onora O'Neill and in a recent paper from University College Dublin - is how much this vision shares with the free market, neoliberal vision of humans as creatures of autonomy, choice and control, rather than being embedded in a framework of care. As Pellegrino says, all autonomy is exercised in the embrace of others. Ms O'Neill speaks about the danger of seeing ourselves predominately as consumers. When I hear this discourse, it immediately makes me think of the type of limited human being Ayn Rand, the darling of the alt-right, demonstrates.
Medicine has advanced to the point where every patient in this country will be asked for consent. They will not be asked to undergo what they consider to be burdensome treatment. As I will show, there is evidence from a range of jurisdictions that the vast majority die deaths that are considered to be deaths with dignity. The vast majority of people in nursing homes are not subject to cardiopulmonary resuscitation and do not die on ventilators. There is compelling evidence that there is a significant move forward in advance care planning. We have strongly encouraged this development and been part of developing an advance care planning course to train doctors. I have written a book entitled, Ageing and Caring: A Guide for Later Life, which includes an advance care plan, entitled "A Kinder Future". Unlike some advance care plans, A Kinder Future allows people to ask for what they would like, as well as what they would not like. One of the challenges in some of the advance directive work is that it is exclusively about not having something rather than having something.
As one of my colleagues in UCD has said, operating solely from a primacy of choice logic negates the interdependencies in care relations and assumes that all patients are independent and autonomous, even at moments of high vulnerability. There is a danger that end-of-life care is framed as abstracted rational choosers, ignoring that they are relational, emotional, and embodied human beings. Indeed, if I have illustrated this, I hope the British Medical Journal, BMJ, review of Terry Pratchett visiting Dignitas in Switzerland has been helpful in illustrating the enormous strains that this puts on our relational elements. To refuse care is a challenge and much of this discourse fails to recognise that we sometimes find it much harder to receive than to give. Choice logic may also lead to the prioritisation of performance and control over compassion and care. One of my early papers was on how we live in a hypercognitive productive society and how we have allowed ourselves be seduced by some of these tropes. Very helpfully, one of the fathers of both modern medical humanities and modern ethics is a wonderful man called Ed Pellegrino. He has talked about our concept, as physicians, as moderate autonomists and moderate welfarists so that we see that broader picture and the experience. We have certainly moved away from paternalism but autonomy must be seen in a broader context and cannot be given an idealised space. People are vulnerable and they are hurt. One of the real worries is around the information they get and also the prejudices they may harbour about future care.
This is most marked in younger older people. This is a key constituency around assisted suicide in the tiny minority of jurisdictions where it is allowed. The worry here is not so much that we impact on the disabled and the vulnerable today but we set a matrix and a paradigm where their life is considered to be less worth living. Recently, I had to do an editorial and write on a paper from Finland which asked older people from 70 upwards who among them wanted to live to be 100. It was like the old George Burns joke, which is about somebody who is 99. It showed that people in their 70s were very ambivalent about later life but actually people in their 90s said yes please, give me more. Indeed, I was at a meeting in Oslo a few years back where Norway's oldest man was present, a Mr. Falck who was 108. When asked when he thought it was a good time to die Mr. Falck said he used to think 110 but 112 was looking better.
We have many papers showing that people say that they would rather die than have a severe stroke. I have been dealing with stroke for over 30 years. We have a positive proactive compassionate appropriate development towards stroke. In 30 years not one of our patients has chosen this pathway. Without being a Pollyanna or a sentimentalist, what has been impressive is the resilience of patients and their families and the evolving of care networks that has brought this about. A turning moment for me was when on the Gay Byrne radio show there was a rather controversialist general practitioner, GP, who proudly boasted of how a friend of his had a severe stroke. The friend had said that if he ever got a severe stroke that he wanted to be given the big injection. The day after he got a severe stroke, the GP gave him this injection. I was horrified because I have seen people with a severe stroke turn around within 48 hours, within four weeks and within six weeks. This prejudice against disability is enormously powerful.
This is where my medical humanities hat comes out. In popular culture, I ask the committee to turn toward "Million Dollar Baby", the film with Clint Eastwood and Hilary Swank. One could feel within the media and popular discourse a sympathy towards the euthanasia that he carried out. However, as a carer I was horrified. She had pressure sores. One does not get pressure sores in good care with a paraplegic. She was clearly clinically depressed. She was in a horrible environment and Clint Eastwood's character could have put her into a wheelchair and brought her out to a ball game or a concert. What we saw was mistakenly construed as some kind of a noble deed, when what we actually saw was an ignoble response to dreadful care. One could say the same thing about Michael Haneke's most recent movie "Amour". Again, the intelligentsia very often lauded it as somehow noble. For those who are interested I can pass on the details. However, this was very clearly a case of poor care. The woman had a speech problem. When in her last moments the woman said "mal" those who speak French know that might be existential angst or it might be that she had a pain in her leg.
Our concern is that portraying certain conditions as worse than death undermines disability. We have seen this with Joanna Trollope in England saying that she would rather die than go "gaga", a horrible way of describing life for people with dementia, whose internal quality of life is generally maintained. Katie Hopkins is somewhat similar. However, people say that if one quotes Katie Hopkins what can one expect? The impact of how we frame our care network and our relationship has been beautifully outlined by Susan Sontag in her Illness as Metaphor. This was written in the 1980s when she had breast cancer. Care for cancer then was poor. She twigged, as a sensitive commentator on the human condition, that if we have a negative popular discourse about a condition it feeds into how we relate to it and the conditions. She wrote
Illness is the night side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick....It is impossible to take up residence unprejudiced by the lurid metaphors with which this it is landscaped.
This is all too current. Even within the medical profession people may be blind-sided by this. There was a recent RTÉ documentary by relatively young doctors who went to the Netherlands. I was quite horrified by one of the cases. The justification of the assisted suicide was that the patient had a progressive dementia and she would have to be fed with a tube. Again, I nearly hit the radio. We know since 1999 that tube feeding in dementia is not associated with maintenance of life, or suffering of pressure sores, but actually may be worse because people reflux. We would never have considered giving this woman a tube unless she asked for it. Papers from Belgium and the Netherlands, and Belgium in particular, around psychiatry patients, show that the sort of things that bring people towards assisted suicide in this type of set-up are very similar to those that bring them towards suicide, the suicide that we deplore, that we wish would not happen, because it robs us of some of our fellow citizens.
I come back to dignity. It is about realising that people often talk about how undignified it is for a patient but it usually is about how undignified the care setting is. Our role as sentient, aspirational human beings is to improve care. I was the first medical director of the Alzheimer Society of Ireland. I have been involved with the promotion of better standards at Leas Cross. I am very heartened by the current HSE programme about us identifying our common existential vulnerability and a common fate with people with dementia, rather that portraying it as Joanna Trollope does.
Much of the impetus for seeking assisted suicide is a complex nexus of fears over loss of locus of control. Certainly, from the point of view of the health care professions we can reassure people that we will maximise choice and autonomy over fears that one’s voice will not be heard, misperceptions of care paradigms - as I have spoken of several times already - occult and overt prejudice against disability and age, denial of the resilience of the human spirit in the face of adversity, and a failure to contextualise autonomy as one component of our relational framework of care and support through life.
Public and private discussion with regard to assisted suicide should be seen to represent concerns over adequacy of treatment and support as well as existential concerns relating to the future: these need to be proactively addressed. To ask doctors to run counter to this by killing patients short-circuits and undermines our impetus to care, comfort and support and damages our framework of care. Current and future patients need to be reassured that the response of the healthcare professions to distress and pain is one of compassion and care, addressing the needs at a range of levels - biological, psychological, social and spiritual - while respecting wishes to the greatest extent possible.
