The Sense Of "Lack Of Dignity" At The End Of Life

Dr Paulina Taboada
Profesor Centro de Bioetica
Pontificia Universidad Catolica de Chile
Alameda 340 Correo Central 1
Santiago, Chile

Recent empirical data on euthanasia and other end-of-life decisions in The Netherlands suggest that – in spite of having learned better ways to alleviate symptoms at the end of life – most Dutch physicians still think that euthanasia cannot be avoided by providing adequate palliative care (Cf. Onwuteaka-Phillipsen, B. et al.: Euthanasia and other end-of-life decisions in the Netherlands in 1990, 1995, and 2001, The Lancet, published online June 17, 2003: http://www.thelancet.com). This evidence poses the question about the reasons for euthanasia requests. In contradistinction to the first Remmelink Report (1991), the latest study does not inquiry into the reasons for the euthanasia requests. So, if we look at the data provided by the Remmelink Commission in 1991, we realize that 56 % of the patients asking for euthanasia in The Netherlands did so because of a sense of "lack of dignity". The data is striking since "lack of dignity" has never been listed among the conditions for ‘justified euthanasia’ in The Netherlands.

This empirical evidence confronts people working in palliative care with the question how to reconcile human dignity with imminent death? The answer they give to this question has important practical consequences for their conversations with patients who are subjectively experiencing a ‘lack of dignity,’ and for shaping their concrete behavior in such situations. Indeed, an important ethical question in palliative care is how basic ethical principles of respect for human life and dignity can be applied in the context of dying persons?

It is well know that in defining the specific goals of palliative care, the World Health Organization states that "palliative care... affirms life and regards dying as a normal process,... neither hastens nor postpones death." This definition corresponds to a conception of the so-called ‘right to die with dignity’ not as a ‘right to die’, but rather as a right to a specific ’way of dying’. In fact, there cannot be a ‘right to die’, but rather a ‘right to receive care’ during the dying process. This difference is extremely important, because it points to the concrete ethical challenges that occur when patients are dying. The main idea is that the human process of dying poses certain ethical demands on the medical personnel as well as on society. Palliative care is conceived as a concrete active answer to these ethical demands. In fact, one of the fundamental moral attitudes orienting the praxis of palliative care can be expressed as an unconditional respect for the dignity of each human person, even in situations of extreme weakness and unavoidable death.

There seems to be general agreement about the fact that to artificially prolong the agony is contrary to the dignity of the dying person. Moreover, the Judeo-Christian tradition affirms the existence of a moral duty to accept death. In this conception, the right to die with dignity is considered as a constitutive part of the right to live. It is well known that - in contradistinction to the way in which most proponents of euthanasia and medically assisted suicide understand the expression ‘right to die with dignity’ – the Judeo-Christian tradition absolutely excludes the possibility of intentionally taking ones own life and/or helping others to do so. But it also excludes the so-called ‘medicalization of death’, arguing that this is contrary to the dignity of the dying person and to the so-called ‘moral duty to accept death’. This statement suggests the notions of a good and a bad death, in the moral sense of the expression.

From an ethical point of view, to speak about a good or a bad death presupposes an understanding of the act of dying as an act in which human freedom can be exercised (actus humanus) – at least to a certain extent - and not as a merely involuntary act (actus homini). In other words, the idea of the existence of a good and a bad way of dying rests on a conception of death as something that does not merely happen to us (mere passivity), but as an act that our free will is able to sanction: we are free to accept or to reject death. Nevertheless, experience shows that death is not something we can decide about. We are not able to choose whether or not we want to die. But in spite of the inevitability of death to the human condition, we are actually free to choose an attitude of acceptance or rebellion in the face of imminent death. Kübler-Ross (1969), for instance, describes five kinds of emotional reactions observed in patients facing death: anger, denial and isolation, pact or negotiation, depression and acceptance. The existence of various attitudes toward inevitable death suggests the possibility of a personal free choice in this regard. And it is precisely this inner attitude toward imminent death that becomes ethically relevant for a conception of a ‘good’ and a ‘bad’ death. People working in palliative care should be able to help patients in this regard.

Nevertheless, health care is a cooperative enterprise that brings together people from different cultural and religious backgrounds. In the hospital, we die surrounded by people that have very different views of what a good life and a good death means. One’s views about what is considered as a ‘good’ death is influenced by the moral commitments one holds. Laín Entralgo (1979) sustains that death cannot be regarded as a primarily medical or scientific event. Death has a deep cultural, moral and religious meaning. Cultural, moral and religious views of death shape how it is understood and determine what is considered as the appropriate behavior, both for the dying person and her family, as well as for the caring personnel.

The strong orientation toward cure characterizing contemporary medicine may encourage aggressive treatment - even if not clinically appropriate and/or contrary to the patient’s wishes - in order to avoid any perception of under treatment. To be involved by such a cultural trend, as well as by its opposite - i.e., the growing acceptance of the practice of euthanasia and physician-assisted suicide - may impose grave moral dilemmas on dying persons, not allowing them to die in the way they consider the right one. For instance, the results of The Study to Understand Prognosis and Preferences of Outcomes and Risks of Treatments (SUPPORT, 1995) suggest that medical efforts to prolong life too often merely prolong dying, even against the explicit desires of patients. Although the study did not address the particular reasons why patients and/or their families rejected certain life-supporting measures, its results suggest that contemporary health care standards are not sensitive enough to the moral and religious dimensions that should shape our attitudes toward life and death. Health care workers too often fall into the temptation of using all available technology in order to avoid imminent death. They seem to have special difficulties in accepting human finitude and death. In this cultural context, people working in palliative care face the challenge of being able to help the dying to ‘master their own death’, in the sense of being able to reach an inner attitude of acceptance in front of the increasing limitations experienced usually at the end of life.

Dr. Paulina Taboada, MD, PhD
Palliative Care and Bioethics