“A time to live – time to die”: a document by Community of Protestant Churches in Europe on death hastening decisions and caring for the dying[1]
End of life issues on the European public agenda
[1] End of life issues have repeatedly been high on the agenda of public and political debates in Europe. In January 2015, at the time this presentation was delivered, Germany was debating whether to make it permissible for medical doctors to assist in suicide, the Parliament in France was considering legalising what is often labelled terminal sedation, and the Belgian court system was handling a request from a prisoner sentenced to life-time imprisonment for grave cases of sexual and violent assaults to have his life ended by a lethal injection, due to unbearable suffering and life conditions. These are only a few, recent examples.
[2] The legal regulation as well as political discussion of these issues vary a great deal among European countries. Some countries have no specific regulation of euthanasia and assisted suicide other than what follows from the criminal law, typically prohibiting taking life other than in self-defence, as well as aiding someone in taking their own life, or not preventing someone from doing so. Other countries have introduced legal institutions which in effect legalise euthanasia and/or assisted suicide, or at least exempt it from prosecution, provided certain conditions are met.
The objective of the document “A time to live – a time to die”
[3] Community of Protestant Churches in Europe currently has 94 Lutheran, Reformed, United, and Methodist member churches, ranging from large, Nordic majority churches to small minority churches in Southern and Central Europe. From its early days in the 1970s the community under its previous name of “Leuenberg Church Fellowship” focused primarily on doctrinal discussions. But at its General Assembly in Belfast 2001, the now renamed “Community of Protestant Churches in Europe” decided that it should be able “to give a clear Protestant witness on important current questions of politics, society and ecumenical matters, in a way which is more prominent and up-to-date than it has previously”.[2] An upshot of this decision was to intensify the Community’s involvement with social-ethical issues and public policies, with the ambition of articulating a Protestant contribution to public and political debate at a European level.
[4] The document “A time to live, and a time to die” must be seen in this perspective.[3] In a political, legal and public context where end of life issues are repeatedly being debated, the Community considered it relevant to explore and articulate a Protestant approach to these questions. Its ambition is to offer, as the subtitle indicates, an aid to help orient the CPCE member churches, as they are confronted with end of life issues in their own contexts and faced with a twofold task or mandate: a public as well as a pastoral. First, the churches have a responsibility to engage with and participate in ongoing public debates on legislation and policy-making. Second, they have a pastoral mandate to accompany members who are confronted with these questions in their lives, be it as family, heath care professionals, legislators, politicians, or parishioners, who are coming to terms with their own future death.
A protestant approach to end of life issues?
[5] The overall point of the document is to explore what caring properly for the dying might mean, and in particular whether certain specific, often controversial or ethically difficult actions and practices, can or ought to be part of this care. An adequate articulation of a Protestant response to this question must, according to the document, bring together on one hand key components of Protestant theological and ethical tradition, and on the other the complexities of the actual reality, being deeply attentive to the concrete situations and their contexts. This concern for an ethical and moral reflection which is sensitive to the concrete reality is not only an epistemological or ethical point, it is also a theological point, and as such in line with fundamental convictions of a Protestant legacy, as will be explicated below.
[6] The document first lays out a theological and ethical framework, starting with a basic understanding of human life. It emphasizes the fundamental determination of human beings through their relation to God. Created, justified and renewed through God’s loving action, and thus defined as the image of God, the human being is endowed with a basic dignity, which rests not in any innate capacities, but in what is ultimately received as a gift from the hand of God. Relationality is thus a basic, constitutive and thus inescapable condition of human life, manifest also in the multiple ways in which human beings are embedded in and dependent on worldly relations. And this dependence on relations to something and someone other than oneself is intrinsically associated with human dignity, rather than something which is in conflict with human dignity. This defines human life as life in response, basically in response to God’s initial action in creation and justification, from whom life, its fulfilment and goodness is received.
[7] Two important things follow from this: First that responsibility as a moral category referring to human action and performance is secondary to what is received from God as a gift. This disconnects moral responsibility from achievement of fulfilment and perfection of human existence. Instead, it frees the human being to serve the neighbour and to be attentive to the neighbour’s well-being, not as a general or abstract idea, but as the neighbour is encountered in everyday life and within its many mundane tasks. Importantly, this also implies that the notion of Christian freedom is cast quite differently from the modern notion of autonomy. Consequently the triad of responsibility, freedom and love is viewed as a fundamental figure of Protestant ethics in this as well as other texts on ethics from the CPCE. Second, it follows that goodness and value in human life ultimately flow from God and God’s action upon the world, rather than from human will, preferences or the human activity of valuing.
[8] There also follows more specifically ethical perspectives from this basic understanding of human life. First that there is a basic duty to protect human life against harm and violation. This could not, however, be reversed into an obligation for the person to live at all costs or to prolong life as long as possible. Recognising life as a gift also implies recognising and accepting its finitude. Second, care and compassion for the sick and dying are emphasised as longstanding key duties and virtues in the Christian tradition. The seriously and terminally ill human being should be cared for also when there are no possibilities of recovery or improvement. Moreover, care ought to recognise and attend to the multidimensional character of human life, its physical, mental, social, relational, existential and spiritual dimensions. In sum, regard for the patient, in terms of being attentive towards the unique character of his or her life, concrete experiences of illness, distress and loss, biography, social relations, self-understanding and history, is an essential implication of the idea of responsibility and neighbourly love. Viewing the patient in light of standardised images of what serious illness might mean, or what an ideal way of dying is, neglects the unique particularity of the patient.
Withholding or withdrawing life-sustaining treatment
[9] The question about under what circumstances to withhold and perhaps especially to withdraw life-sustaining treatment is probably experienced more regularly than questions about euthanasia or assisted suicide in the everyday clinical practice, although the latter are in general higher on the agenda in media and public debate. This question has, as discussed in the document, two somewhat different dimensions. First, it is a question about procedure, more specifically how a legitimate and warranted decision is reached in a concrete situation: who should be involved in the decision-making process, who should eventually decide, and based on what? Second, it is obviously also a question about the ethical concerns and values that are relevant in order to approach and address these situations.
[10] Regarding the question about procedure, the question about how to reach a legitimate and warranted decision about whether or not to discontinue life-sustaining treatment obviously becomes particularly acute in situations where the patient can no longer form or articulate his or her own wish. In cases where the patient is conscious, well-informed and aware of the situation and has expressed such a wish, life-sustaining treatment should not be administered against the will of the patient. This is obviously in line with the central principle of autonomy in medical ethics, but it also corresponds with ideas of personal integrity and the importance of protecting it against unwanted intrusions and infringements. But often the patient’s will can not be obtained directly, either because the patient is not able to articulate his or her wish, or is unable to form a well-considered decision, due to mental distress, severe depression or dementia, or other conditions incapaciting the patient. How can a warranted and legitimate decision regarding discontinuing treatment be reached in these situations?
[11] An instrument often mentioned as a solution to this type of situations is advance directive, a declaration where a person, while still being in sound mind, expresses in writing his or her will regarding life-prolonging treatment in situations where he or she is no longer able to form or express an opinion. In such cases, should a patient’s advance directive always be respected? A possible objection is the difficulty in deciding in advance concerning an entirely different life situation from the present one, and the fact that people might have a very different perception depending on whether they are contemplating a future life of grave illness, or are actually experiencing it. Making advance directives absolutely binding for decisions about discontinuing life-sustaining treatment, does not allow for this possibility of changes in experience, perception, valuations and life plans. An alternative approach would be to view an advance directive as one factor among several in the decision-making process, giving greater weight to the advance directive the more recent or renewed the directive is, or to add an additional requirement that there is no reason to believe that the directive no longer expresses the will of the patient.
[12] Another way of deciding would be by proxies, either in terms of familiy members, or in terms of an appointed legal guardian, who may or may not be a family member. Family members, such as the spouse or partner, children or siblings, might have intimate knowledge of the patient’s beliefs, values and overall life-plans, as well as the best interests and wellbeing of their loved one at heart. But clearly there are situations where neither is the case, where family members disagree, or where the patient does not have any close family. A legal guardian might be appointed by the patient to formally represent and take care of the patient’s best interests and wellbeing when the patient is no longer able to do so him- or herself. Legal guardianship could – and normally should – be combined with careful consultation with family members. A point made in the document is that in these situations, following upon a thorough and carefully conducted process of inclusive communication and deliberation, involving family members, health care personnel treating and caring for the patient, counsellors, the final decision ought to rest with the medical doctor responsible for treating the patient, rather than with family members. However, it is emphasised as vital that communication before the decision is made is given sufficient time and space. This is especially so in cases where the patient is a child, allowing parents and other family to come to terms not only with the traumatic event of loosing a child, but doing so in a way that involves a decision about whether or not to discontinue life-sustaining treatment.
[13] In sum, it is emphatically the understanding of the document that moral concerns and evaluations pertain not only to the decision about whether or not to disconnect life-sustaining treatment, but very much also to the process that leads up to the decision. An ethicallly warranted decision should not only have certain substantial qualities, but also procedural ones.
[14] With regard to their substance, decisions about continuing life-sustaining treatment in situations where the patient’s will can not be obtained have typically been understood as a decision about whether or not continued life-sustaining treatment has become futile and burdens the patient more than it benefits him or her. The relevant situations, presented in a taxonomy in the document, range from cases where an – in any case imminent – painful dying process is prolonged by hours or days, without any prospect of alleviation or other form of beneficial expression of life, via cases of persistent vegetative state, where vital functions such as respiration and circulation are in place, but with irreparable brain damage and without any conscious sense of self or ability to relate to surroundings, to states of irreversible coma.
[15] In its reflections on the question about futility of further life-continued treatment, the document tries to strike a balance between making the decision about maintaining biological life on one hand, and on the other maintaining life with a minimum of quality. It rejects that continued biological life in itself without any consideration of the more specific qualities and conditions of this life, should be considered an overriding good. But at the same time it opposes a widespread argument in the common debate, namely that treatment is futile unless it sustains a life with a persistent sense of the self, a minimum of capacity for agency and possibility of forming and pursuing plans, projects and interests. Inspired by its initial description of human life and its dignity as basically embedded in relations of receiving and dependence, life-sustaining treatment might be worthwhile rather than futile also when it does not continue a life of self-asserting agency and control, for example by continuing a life able to receive with some degree of awareness sensory impulses such as touching, light or sound.
[16] In this context the Catholic distinction between care and treatment, and the corresponding claim that life-sustaining forms of care could not under any circumstance be discontinued, has been heavily debated with regard to whether or not it might be acceptable to discontinue artificial nutrition. The document underlines that given the strong ideal of Christian ethics to care for human life also where no cure or improved medical condition is possible, there is a similarly strong presumption in favour of continuing life-sustaining forms of care, such as artificial nutrition. But it denies that this can be an absolute rule, disconnected from considerations of how the patient is affected, and whether or not upholding nutrition simply exacerbates rather than relieves distress and pain.
Euthanasia and assisted suicide
[17] Euthanasia and assisted suicide are considered to raise partially similar, partially different ethical concerns and questions. What they have in common is that the permissibility of these actions under specific conditions is typically justified by a combination of two arguments, namely autonomy and beneficence: that there might be certain conditions of serious illness, pain, distress etc. where it might be compatible with the patient’s best interest to have his or her life ended, and if in those situations the patient expresses such a wish, respect for autonomy implies that it can not be wrong to accommodate the wish. The document discusses the merit of these two arguments, suggesting that they are insufficient for overriding the very strong presumption in Christian ethics against deliberately taking innocent life.
[18] With regard to autonomy the document offers an internal as well as external critique of the way the argument is typically constructed. Internally, it points to the difficulty of obtaining a truly autonomous choice and decision from a patient under conditions of severe and possible terminal illness, distress and agony, situations where the will to live is known to fluctuate considerably. Externally, it argues that the understanding of autonomy which underlies this argument, is one of self-determination and self-governing. This concept of autonomy, however, is alien to a Protestant notion of freedom as described initially, where freedom is intrinsically related to responsibility and love, and grounded in relationality and dependence, rather than self-sufficiency.
[19] Thus, the document does not accept the argument that assisted suicide might be acceptable even if euthanasia is not, because assisted suicide should allegedly be a more “pure” form of autonomous action, death being brought about by the person him- or herself, and not a third party.
[20] With regard to beneficence, “A time to live, and a time to die” refers to studies of the reported reasons for requests for euthanasia, which show that only in very few cases is intractable, physical pain the sole reason for requesting it. Far more dominating are reasons where some form of self-perception or -interpretation is prominent, such as sense of loss of dignity, fear of being a burden to others, etc. But these kinds of self-interpretations in situations of serious and terminal illness are to a large extent also mediated through the patterns of valuations and images of meaningful human life offered through symbolic representations and structures in a wider cultural context. Clearly such images and values can not be changed at will in a short time, and thus the requests of euthanasia that they might produce, are unlikely to go away. But the point is that acknowledging this background questions the argument that the patient’s best interests and well-being is best served by accommodating his or her wish for euthanasia or assisted suicide. Offering language and symbols allowing different interpretations and perceptions of a life coming to its end would be an alternative strategy of response to the request.
[21] That said, namely that the document does not find the frequently advanced arguments in favour of euthanasia and assisted suicide convincing, it also strongly emphasises that churches and congregations have more than one task and responsibility when confronted with these issues and requests. First of all it is underlined how churches as well as their local parishes, ministers and pastors, diacons, and members, recognise the deep agony, despair and suffering that might underlie wishes and requests for euthanasia and assisted suicide. The distress and anguish experienced by patients and their close ones in these situations should not be easily bypassed by quickly resorting to ethical arguments and too quick rejections of the requests. Nor should churches be too quick to seek refuge in the argument that suffering is a part of human life in this world, and that suffering can even be a locus of meaning and exercise of a Christian calling. Rather they should be willing to fully listen to and share in the experiences and stories of the deep agony that might lead people to contemplate hastening their death.
[22] A consultation with representatives from many of the CPCE members churches held in 2011 as part of the finalising process of the document pinpointed how this is particularly important to realise when churches live and work in contexts where euthanasia and/or assisted suicide have become legally institutionalised and widely accepted practices. Where people, including church members, see no other way out than embarking on a choice which the church finds it hard to defend on ethical grounds, this should not result in the abandonment of the patient. The choice of the church is not one between either becoming an accomplice in euthanasia or assisted suicide, or abandoning someone who sees no other way out. Rather its obligation is to continue to accompany the patient with care and the comfort of the word of God, prayer and the rich liturgical and ritual tradition of the church, as well as counseling and guidance where that is asked for.
[23] In conclusion, the Protestant churches in Europe recognise the many dimensions of moral concerns and judgements evoked in situations of end of life. There is a clear mandate to celebrate and defend the gift of life by the Creator, which includes pursuing an existence of dignity and fulfilment for each person, and accompanying those who go through grave experiences of suffering. There is an undisputed mandate to engage in the practice of care for each and every human being, to alleviate human suffering, and to stand by and accompany those who wrestle with pain and despair in the last phase of their lives.
NOTES
[1] Based on presentation delivered at the Lutheran Ethicists Gathering, Chicago, January 7 – 9, 2015.
[2] Leuenberg Church Fellowship, “Final Report of the 5th General Assembly of the Leuenberg Church Fellowship (19–25 June 2001 in Belfast).” http://www.cpce-assembly.eu/media/pdf/Vollversammlung/2001/Final-report-Belfast.pdf (accessed March 29, 2015), 1.
[3] Community of Protestant Churches in Europe, Council, A time to live, and a time to die, 2011. The text can be downloaded at: http://www.leuenberg.net/time-live-and-time-die
Ulla Schmidt is professor of practical theology at Aarhus University, Denmark. She is also a member of the Community of Protestant Churches in Europe’s expert group on ethics.