Ethics, Euthanasia and the End of Life
Presentation at The Forum on End of Life in Ireland, Ethics Workshop
11 November 2009
Dónal O’Mathúna, PhD
Ethical issues at the end of life are challenging to address because they raise many difficult and emotional issues. People close to the end of their lives often want nothing more than to be relieved of their suffering, to be at peace, and to have a say in how their lives end. It is then very hard to hear others claim that some of the possible options are unethical. But there are times when what we want, when what we believe we should be free to choose, is still not the right thing. In spite of what we honestly believe, what we want may not be what is best for us or, what is best for others and for society.
At the same time, discussions about ethics and the end of life need to occur. Increasingly, the ethical and legal issues are being examined in Ireland. I have been involved in recent debates about euthanasia at student societies in Trinity College Dublin and University College Cork. The October issue of the Law Society of Ireland’s Gazette featured euthanasia on its cover (Herron 2009). The way some people in Ireland have died has made the news and raises ethical questions.
Ethical issues at the end of life, and particularly topics like assisted suicide and euthanasia, raise important questions. While ethical issues are often addressed from an individual’s perspective, the social dimensions of ethical issues must also be considered. The early ethics literature, from the ancient Greek philosophers, focused on developing the good society. What values and practices are necessary to build a good society? When considering end of life ethics, two very different visions of how to build a society are being promoted. Part of what makes the debate over assisted suicide and euthanasia so important is that we are being presented two very different approaches to social ethics.
Underlying this debate are tragic stories about terrible situations that people in Ireland have faced at the end of life. This Forum has heard too many stories of an Irish system that fails people when they reach the end of life. As tragic as these examples are, however, they do not mean that we need to accept, promote or legalise assisted suicide or euthanasia. Before going further, I need to define these terms carefully. We are talking about three different things:
Assisted suicide is where patients intend to cause their own deaths and receive help from a healthcare practitioner. This help may come in the form of information, drugs or equipment. After receiving the assistance, however, the patients themselves take the fatal dose or otherwise end their lives.
Active euthanasia (often abbreviated as euthanasia) is similar in motivation and goal, but here the physician (usually) actively causes the patient’s death. At practiced in the Netherlands, for example, the patient requests death, and the doctor gives a lethal injection of medication (or some other method) to end the patient’s life.
Withdrawing or withholding medical technology covers the difficult decisions that are made regularly in Irish hospitals every day. This terminology must be clearly distinguished from the two previous terms because of their ethical differences. A decision not to begin a treatment or to discontinue some medical technology may be made when that intervention is overly burdensome or unlikely to have any benefit. These decisions are made during difficult circumstances and should be made carefully and after much consultation. They remain ethically very different from assisted suicide and active euthanasia because the intentions of those involved are not to cause death. Instead, the primary focus is on relieving suffering, or avoiding unnecessary and burdensome treatment or technology. The ethical distinction rests on the importance of intentions, which are foundational to our notions of ethical and legal responsibility.
Decisions about withdrawing or withholding medical technology are difficult, but they are made appropriately every day in hospitals all over Ireland. The decisions are always challenging, sometimes unclear and rarely made with total certainty. A decision to withdraw technology should never mean that care is withheld. Part of the transition during the end of life is from medicine focused on curing to medicine focused on caring only. Because healthcare professionals in Ireland are not permitted to end life, we can be more confident that their focus remains on promoting what is best for patients, not wondering about whether it is time to end their lives.
While problems remain with how people die in Ireland, many die with dignity because of the care that can be provided. We do not need euthanasia or assisted suicide to provide good care at the end of life. I have watched as a friend goes from being strong and healthy to weak and frail. His family and friends had many questions, wondering what was next, wondering why. He pursued treatment as long as he could, and then realised when it was no longer helpful. He stayed at home, cherishing every moment with his family, in spite of the challenges, the sadness, and eventually the loss.
I have sat with another friend, looked forward to retirement, but finding himself consumed by cancer. I have read with him, wondering what he could hear, feeling embarrassed myself about what I doing, and then feeling ashamed that I thinking about myself at all. Later I learned that he did have lucid moments and talked about the joy he received from the different people who read to him and prayed with him.
We are faced with two totally different approaches to death and to life. Euthanasia and assisted suicide confront us with having to choose between different approaches to life and how we build our communities.
Death with dignity is something we all want. Unfortunately, some people find death with indignity, hooked up to all sorts of tubes, and pumps and machines. Some find themselves alone, ignored, and left in their own fluids. Sometimes it seems like there is a medical treadmill running out of control. We don’t seem to know how to get off the treadmill safely. So, some say, we need the big, red stop button provided by euthanasia.
But why would anyone think that we can fix the healthcare system by adding the power to kill innocent people? Adding lethal injections to the doctor’s medical bag is not the answer. We need a society where we promote people’s dignity in dying, but without promoting death as our ally. Death is not a friendly partner. In countries which have legalised active euthanasia or assisted suicide, the partnership is not working well.
In the Netherlands, doctors can give competent patients lethal injections or assistance in suicide. The law requires that the patient is well informed about the situation and that the request is voluntary and well-thought out. Yet every year hundreds of patients are killed without giving explicit consent. These illegal deaths are known from research in which doctors were guaranteed anonymity (for what are called the Remmelink Reports). In 1990, 1995 and 2001, almost a thousand patients were killed annually without consent; in 2005 the number had dropped to about 550. Proponents of euthanasia respond to these findings by claiming that people are killed without consent more often in countries where euthanasia is illegal (Herron 2009). Dutch research does not support this claim (Rietjens 2009).
Switzerland has legalised assisted suicide, but not active euthanasia. This has led to what is now being called ‘suicide tourism’ where people travel to countries where they can receive help in dying legally. As of May 2008, five Irish people are known to have travelled to the Swiss assisted suicide group, Dignitas (Herron 2009). However, concerns have been expressed that Dignitas will help anyone commit suicide. Its founder, Ludwig Minelli, has stated that, ‘every person in Europe has the right to choose to die, even if they are not terminally ill’ (Leidig 2005).
Minelli makes it clear that underlying the push for legalised euthanasia and assisted suicide is a drive for personal autonomy and control. Pain and suffering come in many different forms, but adequate pain control and hospice care can address much of this pain. When palliative care is inadequate, the solution is to improve that care, not introduce euthanasia. However, surveys have found that even when pain can be treated, euthanasia and assisted suicide are sought as a means of taking control over one’s life.
Yet part of the challenge of life is that it is not under our complete control. Pain and illness confront us with this fact of life. It is at that point that we start asking deep questions about our lives. As the Law Society article notes, people asking for assistance in dying or euthanasia are seeking ‘a merciful release from a life that has become a meaningless burden’ (Herron 2009). Yet if we provide help in dying, we are saying, “You’re right. Your life is not worth living. Let me help you end it.”
People at the end of life may say that they feel like a burden, and don’t want to be a burden on caregivers. If we as a society provide euthanasia, we are saying, “You are a burden. And we don’t want you burdening us.” A right to die can quickly become pressure to die. Prominent British ethicist, Baroness Warnock, stated recently that elderly people with dementia have ‘a duty to die’ (Beckford 2008). She claimed that those with dementia are wasting the lives of those who care for them and ‘wasting the resources of the National Health Service’ (Beckford 2008). With all the economic pressures of these days, is this the message we want to send those who are sick and disabled?
Those with full control over their lives may be able to resist any pressure to end their lives prematurely. But many other people are vulnerable and less able to withstand inappropriate demands. Advocates of euthanasia and assisted suicide claim no one is harmed by an individual’s decision to die. Yet legalising these practices could put many people at risk. Over 1800 cases of elder abuse were reported in Ireland in 2008, most of which were inflicted in people’s homes by family members (Roche 2009). Making euthanasia or assisted suicide available in the midst of such dysfunctional situations could be disastrous. Even outside of abusive situations, people who feel like they are a burden on others could be pressured into ending their lives. Asking vulnerable or dependent people to consider whether they should end their lives is an additional burden we should not ask them to bear.
Advocates of voluntary euthanasia also claim, “It’s my life. I should be able to do what I want with my life.” Yet careful reflection quickly reveals that this is not the case. How did we get ourselves from birth to our first birthday? To get through our early years, others provided for us, protected us, taught us and encouraged us. For many people, this includes seeing their lives as a gift from God. But even those without religious beliefs should acknowledge that their lives have come as gifts from many others.
Again, there are two views being promoted here about our lives. If we view our life as something we have earned, then we may claim that we can do with it as we want. This view easily fosters individualism and a focus on what I want to do with my life. Yet when we see our life as a gift, we approach it with gratefulness for whatever we receive, even with the limitations and restrictions of illness. Such a view also includes looking at the responsibilities that come with the gift, particularly the responsibilities we have towards others and society. Accepting such responsibilities is important in building a society that does not need euthanasia. We cannot simply say ‘Don’t legalise this or that’. We have to get involved in building the sort of society we see as ethically preferable. To do this requires that we all engage with others in our communities, guided by certain commitments.
Compassion must be promoted in the way we care for the dying. We need to carefully consider what euthanasia would do to our healthcare professionals and our health service. At the moral centre of healthcare has been the call to cure when possible, but always to comfort. Do we want doctors and nurses who will care for us up to a certain point and then kill us? It would change people deeply to include killing as part of their practice. This is why the Irish Medical Council (2009) states that a doctor ‘must not participate in the deliberate killing of a patient by active means.’ Similarly, An Bord Altranais (2000) states ‘that every effort should be made to preserve human life.’
Companionship for those who are dying means that all of us need to be involved with those who are frail or older. Are we willing to be a society in which people call on their neighbours, visit their relatives and keep an eye out for others? Are we willing to sit with people and enhance their dignity by reminding them that they matter? The pressure for individualism is great, and resisting it requires a lot of effort.
Conversation with those who are dying or moving in that direction needs to be open and honest, even when the medical news is not good. Sometimes needs are not addressed because people are not asked about the adequacy of their food, fluids, comfort or pain management. After asking, people should be listened to carefully. All this involves a commitment to the person and who they are as significant individuals.
Continuity with one’s spiritual life is very important at the end of life. Religious beliefs are sometimes said to close down discussions about euthanasia by offering a loud, No. Yet, religious and spiritual beliefs can bring many resources to help at the end of life. Instead of despair over the end of this material life, such beliefs provide hope for an after-life. They can then help lessen the fear of dying. In addition, a sense that our lives have been given by God for a purpose can bring much meaning. We need to help people belief that their lives can bring significant good, no matter how weak or disabled or short that life has become. How we die can be our last gift to others and show them our willingness to persist even in the face of serious difficulties.
In many areas of life, we put restrictions on what people are legally allowed to do. People of sound mind may claim they are able to handle a car going 200 km/hr along the motorway. Yet we place restrictions on them saying the risk is too high of killing innocent people on the roads. In some countries they claim that someone found guilty of heinous crimes should be put to death. They argue that enough checks and balances can be put in place to avoid mistakes and problems. In Ireland, we say that we will not legalise the death penalty because the risk is too high of killing innocent people.
Some now argue that people of sound mind who are suffering at the end of life should be permitted to end their own lives. They claim we can put enough checks and balances in place to avoid problems. I disagree. No one in society should be given the power to kill innocent people. Doing so is inherently unethical. In addition, legalising assisted suicide or active euthanasia puts at risk the lives of other innocent people who don’t want to die.
The alternative is challenging, though. We need to work hard at developing a society in which all people are valued and cherished. When anyone feels like their life is meaningless, they should be helped to see where it has value. When anyone feels like a burden, they should be shown the importance of interdependence. When anyone is in pain, they should be given the best care available and shown that we will be there with them in their suffering. We should commit to being a society in which we will hold one another’s hands in our dying, and be there with one another when we take our final breath and pass on to whatever comes next after death.
An Bord Altranais. The Code of Professional Conduct for each Nurse and Midwife. 2000.
Beckford, Martin. Baroness Warnock: Dementia sufferers may have a ‘duty to die’. Telegraph. 18 September 2008.
Herron, Michaela. Live and let die. Law Society Gazette. October 2009, vol 103, issue 8, pp. 16-21.
Irish Medical Council. Guide to Professional Conduct and Ethics for Registered Medical Practitioners, 7th ed. 2009.
Leidig, Michael. Dignitas is investigated for helping healthy woman to die. BMJ. November 2005, vol 331, p. 1160.
McCartney, Jenny. Dignitas and the awful truth about ‘happy endings’. Telegraph. 4 April 2009.
Rietjens Judith AC, et al. Two decades of research on euthanasia from the Netherlands. What have we learnt and what questions remain? Journal of Bioethical Inquiry. September 2009, vol 6, issue 3, pp. 271-283.
Roche, Barry. Reported cases of elder abuse top 1,800. Irish Times. 3 February 2009.