Commending Life’s End to God: The ELCA Message on “End-of-Life Decisions” After Two Decades

[1] Luther’s sermons and letters of pastoral counsel speak eloquently about the ability of faithful Christians to face death confidently trusting God’s promises in the Gospel. In that spirit, the ELCA adopted a social message on “End-of-Life Decisions” in 1992 that picks up this tradition of speaking honestly and faithfully to issues faced by the dying and their loved ones. As a hospital chaplain, I want here to both appreciate the gifts of the 1992 message and ponder what issues and questions might need further work from a Lutheran perspective given the changes in technological, medical and social climate over the last two decades. (The message is available at www.elca.org/socialmessages; then click on “End of Life Decisions.”)[1]

[2] It is obvious that the sixteenth century is not the twentieth century. Indeed, the twenty-first century is not the 20th and in the two decades since the ELCA addressed the issues, rapid technological advances in end-of-life care means that these questions have only gotten more frequent and more complex. Decisions about end-of-life issues, especially if advanced care planning has not been done, are made in times of extremely high emotion, making clear thinking (theological or otherwise) difficult.[2] More than ever before, on a daily basis, individuals and families are facing bewildering and complex end-of-life decisions for themselves and their loved ones.

[3] Why is this so? It is so because the lines between what constitutes “normal means” of medical care and what is “extraordinary” means of treatment at life’s end are now extensively blurred. Part of this blur follows from the greater sophistication of medical technology. Another part of this blur, though, comes from often unrecognized cultural and systemic forces that make advanced care a highly profitable enterprise in the U.S.[3] In my experience as a hospice chaplain, many families would ask me to help them determine the “faithfulness” of a particular course of treatment. The availability of technology that has the capacity to prolong life clearlylead to resistance to any suggestion that faithfulness to God’s grace could lead to a decision to do anything other than pursue all available treatments to keep the patient alive. The availability of technology often seemed to them a way to give God “time to work a miracle” and a way to “show respect for life.” One can read the Bible and know from the 23rd Psalm that God promises to be with us so that “when we walk through the valley of the shadow of death, we shall fear no evil.” However, neither the Psalmist nor Jesus, nor any Biblical writer mentions what to do with ventilators. In many cases, the issues of what constitutes a “burden” or a “benefit” of any specific treatment or course of action are difficult to identify. As doctors know all too well, in most cases, medical prognostication is an uncertain science.

[4] The uncertainty is deepened because most Protestant denominations, including the ELCA, do not offer specific guidance for the use of medical technologies such as those involved in end-of-life care. (In contrast, Roman Catholic moral teaching on end-of-life care has continued to make specific pronouncements for or against the use of specific technologies.) Unfortunately, that lack of specificity, while understandably done in the name of Gospel freedom, blurs lines even more. It can seem of little comfort in the waiting room of an ICU when a family is trying to make a decision about whether to provide treatment A or treatment B at 2am.

[5] We could say that in the social message on “End-of-Life Decisions,” we see the spirit of Luther’s sermons and letters. The message speaks of what it means to die as a Christian with confidence in God’s promises of mercy, grace, and salvation. The focus for the ELCA message is not, then, a casuistical ethics of burdens or benefits (that is, an approach to morality that weighs exact negatives or positive calculations to determine what’s right), but rather it focuses on providing a framework of faith to guide decisions. This gift, despite other shortcomings, remains as relevant today as in 1992. I quote here the basic framework offered early in the message (p. 2):

[6] “Our faith as Christians informs and guides us in approaching personal and public decisions about death and dying today. Among the convictions that should orient our approach are [numbering here is added]:

1. life is a gift from God, to be received with thanksgiving;
2. the integrity of the life processes which God has created should be respected; both birth and death are part of these life processes;
3. both living and dying should occur within a caring community;
4. Christian perspective mandates respect for each person; such respect includes giving due recognition to each person’s carefully considered preferences regarding treatment decisions;
5. truthfulness and faithfulness in our relations with others are essential to the texture of human life; and,
6. hope and meaning in life are possible even in times of suffering and adversity; a truth powerfully proclaimed in the resurrection faith of the church.”

[7] The decision to offer a theological framework rather than specific guidance can be frustrating in cases of uncertainty, especially for clinicians. Still, it does also allow individuals a foundation from which to think about what it means to act with a firm awareness of life’s finitude. Lutherans traditionally share the classical Christian belief that our final end is eternal communion with God and that we are but “aliens and sojourners” during our embodied, and finite life on earth. Lutheran ethicist Gilbert Mielander notes that “if the deepest desire of our hearts, imitated by all our loves, is for God, the fullness of whose (sic) presence cannot be enjoyed in this life–even its indefinite prolongation–could not satisfy this desire.”[4] It seems to me that the message encourages such openness that life in and of itself can be released when it becomes too burdensome.

[8] While those six principles remain extremely relevant, I would like to offer a set of corollaries or questions that emerge from my work to help elaborate them a bit more. In regards to principle 1, no serious Christian theologian would argue against the proposition that “life is a gift from God to be received with thanksgiving,” but we also must stress that communion with God, not life per se, is the greatest good. This recognition strengthens the willingness to not hold onto life at all costs, certain of our final resting place with God made possible by our Baptism.

[9] “The integrity of life processes which God has created should be respected; both birth and death are part of these life processes” (p.2). The question here is, what does it mean to respect the “integrity” of the life process? Does a pacemaker represent an interference with a life process where a heart loses functionality? Does long-term dialysis interfere with a “God given” process where kidney function declines? More needs to be detailed about the faithful use of medical procedures and technologies at all stages of life, and not simply at its end. There remain serious questions about the role of medical technology in relationship to human finitude. We should think carefully about these questions from a theological perspective and not simply defer to medical practitioners views on what is “ethical” or “right.”

[10] The message notes in principle 3 that “both living and dying should occur within a caring community.” To which I say “Yes!!” Congregations should hold Sunday school discussions about advanced care planning (all the congregations where I have taught such classes have welcomed it). End-of-life decision-making should be discussed in the faith community before death draws near, even though such discussions are difficult. Do-not-resuscitate orders should not simply be undertaken with hospital administrators the night before a major medical procedure. Congregations could organize “Circles of Caring” to assist and be with the dying who may not have families.[5] This is about the “consolation of the saints,” an idea that was so important to Luther, and a living out of the priesthood of the believer. But I have known too many Christians, life-long members of congregations, who because of dementia, or other long-term illnesses become separated from congregational life. Pastors and other lay leaders must continue reaching out to include them in the circle of care of the congregation.

[11] The message notes that “a Christian perspective mandates respect for each person; such respect includes giving due recognition to each person’s carefully considered preferences regarding treatment decisions” (p.2). I think this assertion, more than any other, begs explanation. What about the Gospel should cause Christians to affirm the principle of autonomy, which has become the sine qua non of secular bioethics?[6] If autonomy is to be an important principle for Christians, we need to ground it theologically, and autonomy, in the message, seems to be a secular principle barely baptized. I think there can be and are deep resonances between Luther’s concept of Christian freedom and secular notions of autonomy, but I do not believe that they are identical. In my judgment more work needs to be done that helps us think theologically about autonomy, not simply take the secular principle–developed out of philosophers such as Immanuel Kant–and make it a theological principle without thinking about how the concept might function differently. ​As for Principle 5, “truthfulness” can be a complex matter at the end of life. How often are hospice staff asked by tired or anxious families “how long” a family member has to remain alive. We give the honest answer, which in most cases is that we just do not know. And truthfulness about uncertainty seems to be something that many in the medical community often struggle to embrace. At times, families want to protect their loved ones from the “truth,” they do not want them to know that they are “dying.” I have often found that such “protected” individuals know “the truth” full well and that their inability to name that to their families is quite painful. The issue gets even more complicated when one takes into account cultural differences in dealing with death. In my experience, in certain cultures individuals are not told the truth about their condition as a matter of custom, and at times, in a secular healthcare setting, we defer truthfulness for the sake of cultural respect. However, even while respecting cultural differences we should also give serious consideration to people’s religious identities. It seems to me that in the case of the Christian tradition in which I stand, our Christian identity calls for truthfulness about matters of life and death, and that should be taken seriously also.

[12] Finally, principle 6 notes that “hope and meaning in life are possible even in times of suffering and adversity a truth powerfully proclaimed in the resurrection faith of the church”(p. 2). This is true; how we approach the end of life in our hearts makes a huge difference in the sorts of care we can give if we are caregivers, and the sorts of relationships we can have if we are ill. However, notably absent in this discussion is the ways that dementia, an increasingly common problem at the end of life (especially severe dementia, which makes difficult the expression of a person’s wishes, hopes, dreams and fears) affect how end-of-life issues are approached “in our hearts” and how relationships can be sustained. How might those with dementia maintain Christian hope? The answer might not be easy or even one that can be empirically demonstrated, but more thinking needs to be done about theology and ministry toward patients at the end of life.

[13] While I continue to appreciate the 1992 message because of its overall approach, I find some notable omissions that perhaps could have been addressed then, but certainly need attention now. For instance, how might the Lutheran concept of Christian freedom be applied to decisions made at the end of life? Might those who are willing and able to make the decision to forgo extensive therapies at the end of life do so for the sake of the conservation of medical resources for others? What might it mean given the intensifying discussions of health care spending amid an aging population and rising costs? Might one be able to “let go for the sake of the neighbor” for economic reasons? While this sounds like rationing, I do not think a personal decision to forgo treatment to conserve scarce medical resources would have to be.

[14] Also noticeably absent in the 1992 message is an in-depth discussion of palliative care, which admittedly, was not as widely practiced as a field, even in most major hospitals in 1992. Now it has significantly expanded in important ways. Palliative care aims to reduce pain and suffering through various means, relying heavily on the use of increasingly sophisticated pain control drugs. Studies show that it is often the fear of uncontrolled pain that leads some individuals to think about the possibility of physician assisted suicide. [7] The fear of the loss of independence is another reason, but if the Christian community can support individuals who are ill and their caregivers, this fear can be mitigated as well. In certain cases, better pain management can increase a patient’s ability to interact with their family, although in many cases better pain management does make patients less alert. I find the message also remiss in the absence of discussion on “palliative sedation,” which is to say, pain control so strong that it does indeed lead to death. Some bioethicists consider this practice a form of Physician Assisted Suicide, others do not, citing the principle of “double effect.” (For example, the effort to relieve pain can hasten death as a side or “double” effect.) Given the prevalence and relevance of this discussion, it’s unfortunate that the message is silent on that matter.

[15] Finally, the comfort promised by the hospice movement is deeply Christian. It was, after all, the Hospitaler Knights of Saint John who founded the first “Hospitum” or resting place for the sick in the 13th century. Caring for the sick is an ancient Christian practice. The American hospice movement has grown exponentially and figures largely in contemporary life, although issues of access still exist, especially in many highly rural areas. It seems to me the message could have done more to explain how caring for the sick and the suffering is done in imitation of Christ.

[16] There is much to celebrate in the 1992 message; it is a foundation on which to build. It reminds Lutherans that we approach end-of-life decisions with trust in God who justifies and saves us through the promises of Baptism. As technology changes and becomes more costly, and as the medical system offers us more treatment “options,” which we must think about before we accept or reject them, we have more work to do. We need to speak openly about how we wish to live our last days in faithfulness, and what sorts of advanced and costly treatments we might forgo to live our last days with peace and at home. The message rightly reminds us that dying is a process that includes the dimension of faith and that it should involve not only the presence of the pastor but also the compassionate accompaniment of other members of the faith community. We need to speak the Gospel into the ears of the dying so that they might continue to trust the promises God made them in their Baptism, that we die in Christ knowing that we too shall rise with him. We need to do this as the body of Christ, and when we do so, we will help all live and die with the freedom and comfort given to us by a gracious God.

   
NOTES

[1] It might be helpful to the reader to have the social message in hand while reading the present article.

[2] During my first unit of Clinical Pastoral Education, I struggled with how to best respond to questions about dying and suffering at the bedside. Prof. Margaret Farley reminded me that the best approach was to think about suffering and its relation to faith before one entered the room. That practice, she suggested, would prepare me with resources and reflection on which to draw when I had to think about how to act or respond in the face of a particular person. I found her advice to be very helpful.

[3] For a detailed and persuasive study about how an increasing number of high-tech treatments to extend life for the elderly have become “normal practice,” not because of ethical or theological analysis, but because of lobbying by pharmaceutical and medical device companies, see Sharon Kaufman, Ordinary Medicine: Extraordinary Treatments, Longer Lives, and Where to Draw the Line (Durham: Duke University Press, 2015).

[4] Mielander, Gilbert Neither, Neither Beast Nor God: The Dignity of the Human Person (New York: New Atlantis Books 2009) 72.

[5] Some bioethicsts claim that “advanced directives” are not really valid since they are made by people who attempt to imagine and bind a future self (which they really do not understand because it is only hypothetical) by the present self which they do understand because it is actual. However, even though it is true that we cannot imagine how we might feel in a later and lesser condition, I still maintain the validity of advanced directives, because I believe that our moral values can persist across time regardless of our mental condition.

[6] Autonomy has become a part of the so-called “Georgetown Mantra” of bioethical principles, and a school of bioethics called principalism. Beauchamp and Childress have continued to refine their arguments for the primacy of autonomy in medical ethics in Principles of Biomedical Ethics (7th Edition Oxford: Oxford University Press, 2012).

[7] See for instance the qualitative study in Keith G. Wilson, et al. “Attitudes of Terminally Ill Patients Toward Euthanasia and Physician Assisted Suicide” Arch Intern Med 160 no. 16 (2000) 2454-2460.