Committee for Bioethics, Polish Academy of Sciences, Warsaw
Academia: The suggestion of our magazine’s program board for our next issue to cover the theme of “Old Age” initially made us rather worried. After all, the word has ominous and sad connotations...
Zbigniew Szawarski: Aging as a term has many meanings, and it stirs powerful emotions. Positive and negative reactions appear depending on who discusses aging and in what context. It is also a political concept, as well as carrying certain ethical connotations. Let’s start by talking about some stereotypes. Here I have a book titled “Zdrowe starzenie się; biała księga” [“Healthy Aging: The White Paper”; Wydawnictwo Naukowe Scholar, 2013]. Have a look at the cover…
Smiling grandparents surrounded by grandchildren in a meadow – an idyllic setting.
You get the impression that the authors want to say, “You can get older slowly, easily and pleasantly. We will help you.” And it’s true that the book’s message is that contemporary medicine, medical technologies and healthcare systems allow elderly people to take their fates into their own hands. If you lead an active lifestyle, take the right medication, visit your doctor regularly and stick to their recommendations, it seems as though you will live forever.
Death is not mentioned – it’s as though it doesn’t exist.
And that is a spurious portrayal of aging – a modernist vision. Apparently we have such extraordinary technologies and achievements at our fingertips, and we are such an affluent society, that we are able to spend our retirement years traveling, sightseeing, and developing new and hidden talents. In short, this is the time when we can start living for ourselves. We are finally free of our previous obligations – such as work and childrearing – and we feel alive.
But the reality of aging is very different, and we only really see this when we look at our natural life cycles. The human circle of life is no different to those of other animals: we are born, and we pass through infancy, childhood and youth, then – gradually or quite suddenly – we mature and have children of our own. Eventually they flee the nest; we retire and enter the period of old age – biologically, socially, psychologically, morally. When you are ten years old, you have decades ahead of you, and you generally have a cheerful, hopeful outlook on the future. But by the time you’re 70, you know you won’t live for another 70 years. You have seven years ahead of you, perhaps ten. The exact number is impossible to predict, but in any case you know that the time you have left and your abilities will inescapably keep running out, until the day when you simply die. This means that old age is a very distinctive period in our lives. Asking about the meaning of life when you’re 75, 80, 85, 90, 95 takes on a whole new significance. A few days ago, I read a short article by Peter Singer titled “Choosing Death.” It recounts the story of Mrs. Gillian Bennett from Canada, a woman in her 80s, who has already spent three years suffering from dementia, fully aware that her condition has been deteriorating rapidly to the point when soon she will no longer have control over her own life. So she posts an online letter to her family and friends, explaining that she will end her own life around noon the following day, since she does not want dementia to defeat her...
This may seem shocking, but we all know that we will die one day. What we don’t know is how it will happen. Will we be plagued by cancer for weeks or months? Or will we be struck with Alzheimer’s, which will bring a point – rapidly, or slowly and gradually – when our worn-out bodies and minds are left for our children and grandchildren to care for? These are troubling thoughts, especially since how we die is important. It carries all manner of problems in terms of medicine, society and ethics. Should we live as long as possible at any cost? Or, as Epicurus was wont to say, should we instead have the right to exit our lives if we deem that to be the right choice? All this brings serious and often tragic dilemmas and campaigns promoting the right to die, to a dignified death, the right to opt out of having our lives extended with medical technologies. This is all the more important since the aim of medicine is not to prevent death – this battle is already lost. We elderly people should be able to die with dignity – or at least that’s my personal view. We should be able to die comfortable in the knowledge that just as there is a time to be born and a time to give birth, there is a time to die.
We are talking about a dignified death?
No, I object to that sort of phrasing. Facing death with dignity is a different thing to having a dignified death. When I talk about passing with dignity, I am mainly concerned with being aware of my own mortality. I know that I have to die one day; and while I don’t know when, I don’t want it to happen randomly. For example, I don’t want to be subjected to persistent life-prolonging treatment. I don’t want to be in a situation when everything is being done to extend my life, when it is hanging by a thread, by a week or two, and for this to be described as a triumph of modern medicine. For example, it’s possible to extend the life of kidney cancer patients by an average of four weeks. But what are the actual benefits? What’s their quality of life like? Do they feel joy and happiness, or a crushing depression? How much does this cost? And does it bring them suffering? Only those patients know. But there is this sense of a medical imperative: to preserve life at all cost and regardless of the consequences. I don’t think this is always a wise decision. For me, dying with dignity also means being aware that our bodies and minds will gradually become weaker. This is inevitable. Biological tissue is subject to aging processes, and the brain is particularly susceptible to this. What’s more, any considerations of my own passing should include thoughts about my family – their wellbeing, their wishes. For me, the most horrific way to end my life would be with Alzheimer’s and the dementia and loss of awareness that go with it. Just thinking about being in such a state makes me terribly embarrassed, ashamed. I wouldn’t want those closest to me to be in any way burdened by caring for me. And I also wouldn’t want the state and the taxpayers to cover the escalating costs of care and prolonging life which doesn’t really mean much anymore. The art of living is the art of dying, as an ancient Latin phrase goes.
The committee you run is holding a conference on the “Bioethics of Death and Dying.”
The program includes many topics we would like to discuss. If I remember correctly, the word “euthanasia” appears in it rarely, although one of our guests will be Prof. Gerrit Kimsma, who will talk about the situation in the Netherlands. I’m trying to avoid the word “euthanasia” because of its powerful emotional connotations and a rather ambiguous definition. What does it really mean, after all? What are the criteria of a good or bad death? I just finished reading “In Search of the Good” by Daniel Callahan, a pioneer of bioethics and co-founder – together with William Gaylin – of the Hastings Center in the United States. In one of the latter chapters, the author recalls his visit to the Musée d’Orsay in Paris in 2009, when he “began feeling lightheaded.” In fact he soon fainted, “out in an instant,” and ended up in hospital, having been diagnosed with and already treated for “ventricular tachycardia, a potentially lethal condition.” And he asked himself the question of what would have happened had he never woken up? After considering various possibilities, Callahan reaches the conclusion that if he had a choice of such a quick and painless death, that would be his preference over risking an uncertain, prolonged process of dying – and yet the medical intervention might be seen as having robbed him of a chance for the former. As an aside, we might note that he’s an outspoken opponent of euthanasia. He rose to fame in 1987 with his book “Setting Limits: Medical Goals in an Aging Society.” It included a shocking suggestion: all “physically vigorous persons” should receive medical treatment until they are 85 years old, but after that, the most advanced medical technologies for life prolongation should be withheld, as the alternative would have an economically crippling effect on society. I agree with his point of view; we are faced with a major problem of rapidly rising costs of healthcare and medical treatment. Published a couple of years ago, projections of rising costs of healthcare and medical treatment in the US reveal that taking into account new medical technologies appearing in the future, by 2082 such costs are likely to absorb almost 100% of gross national income. The figure is so shocking, I should cite the source as J. Appleby, “Rises in Health Care Spending: Where Will It End?” (2012, BMJ 345:e7127). We must either start thinking seriously about rationing limited medical resources – and rationing is not a politically correct concept – or start facing up to our mortality and the fact that we will all reach a point in our lives when medicine will simply run out of ideas; as such, I think we should all take a serious look at the prospect of our own death.
Is it possible to opt out of certain medical procedures in Poland?
Death and dying are still taboo in Poland, with our discourse pitched as an ongoing battle between a “culture of life” vs. a “culture of death.” We defend life vehemently irrespective of its quality, irrespective of the consequences, and irrespective of costs. And we fight death with no compassion for the patient. I think Poland is one of just two countries in Europe that have yet to ratify the Oviedo Bioethics Convention (1997). One reason may be the convention’s Article 9 on previously stated wishes; its exact wording is: “The previously expressed wishes relating to a medical intervention by a patient who is not, at the time of the intervention, in a state to express his or her wishes shall be taken into account.” This can be understood as sanctioning the concept of a living will, allowing patients to state explicitly and in advance that they do not wish to be resuscitated in certain circumstances.
Is there any legal framework in place regarding the way we die?
No, there isn’t. As I said, Polish society has not yet reached the point where it is ready for such a discussion. When I read reports from Canada, Switzerland, or the US discussing dying and dignity, I am struck by how these societies are able to prepare for the enormous ethical, social, and economic problems waiting just around the corner. All advanced societies are aging. I’m not even going to talk about the obligations this brings, or the shifting relationships between generations. Do younger people, our children, have a moral duty to care for us – the elderly? Or is this an obligation of the state, since we have spent our lives paying taxes? When the demographics become unbalanced and over half the population is elderly, this burden placed on people who are working, paying taxes and raising their own families becomes too great. But the fact remains that people grow older, and elderly people die. I think it would be right and proper if we were able to make our own decisions about how to end our lives. If this were the case, everyone would be fully aware of their circumstances and able to decide – one more week, one more month, or maybe another six months of living. Is it time to go? As Mrs. Bennett said, “I will take my life today around noon.”
Oh, and did she?
Yes, she did. But not many people die so aware of their own existence, of their own mortality, of their own quality of life, with a conscious sense of responsibility for our own wellbeing, that of their families and of society as a whole. The vast majority of people pass away without this awareness, and their passing is a prolonged process. This is a major problem. Currently there are around 150,000 people suffering from Alzheimer’s in Poland. They require constant, round-the-clock care. Their families are largely devastated, while the costs of managing this illness – which is incurable – continue to rise. Around 10 to 15 years ago, it was said in the States that the cost of caring for a patient with dementia was around $100,000 per year. This is significant; there are no profits in it. Our geriatric medicine and systems of palliative care, care for people with incurable physical illnesses or those affected by various forms of dementia, are far from perfect. And yet we don’t do enough to discuss these issues openly and fairly. The fear of being accused of supporting the “culture of death” seems to paralyze our minds.
So what is needed to shift this taboo?
Perhaps surprisingly, the roots of the medical and healthcare problems in Poland are not technological. What this means is that it will not be enough to invest more money, to buy state-of-the-art technologies, to reorganize the system. As the Americans put it, medicine is in fact a moral enterprise. We must start by considering the fact that we are all individuals; we all have sensitivities, feelings, needs. We have value systems we wish to follow; we have a consciousness; we want to live and die in a certain way. Our problems are of great ethical importance to us. Meanwhile, the ethical problems of contemporary medicine cannot be solved by increased spending or reorganization. And this requires a shift in our way of thinking: we need to acknowledge that we are all human, and that certain values are very dear to us – perhaps more important than biological life itself.
Interview by Anna Zawadzka
© Academia 3 (43) 2014