Taking Care: A Recap of The Center's 26th Annual Summer Conference

As finite, mortal human beings, we must all face the fact that, like every person that has come before us, one day our life on this earth will come to an end. With that recognition—that death is a question of “when,” not “if”—comes certain questions and responsibilities. What does it mean to die well? How should we prepare for our own death? What are the rights and responsibilities of the dying person, and what are those of the caretaker? If we are all going to die eventually anyway, are there any problems with accepting or even hastening our own death? These are just some of the many questions addressed by the speakers at The Center for Bioethics & Human Dignity’s (CBHD) 26th annual summer conference, Taking Care: Perspectives for the End of Life.

Lydia Dugdale opened the conference with an address entitled “Reclaiming the Lost Art of Dying” in which she examined the history of dying within the Christian church. In the 13th and 14th centuries, Europe was in crisis. Plague was decimating the population and the church was in turmoil. People were scared and desperate; death was a constant, immanent threat, and they had no good way of approaching it. Out of these conditions arose the ars moriendi, Latin for “the art of dying.” The ars moriendi was a “dummy’s guide” to dying well. Often taking the form of picture books (in order to be accessible to a mostly illiterate population), it demonstrated the kinds of temptations faced by those nearing the end of life as well as the biblical answers to them, encouraging people to approach death “willfully and gladly.”[1]

The ars moriendi traditional became hugely influential, and knowledge of it was expected of every good Christian, Catholic or Protestant, for the next several centuries. However, by the end of the 19th century, the popularity of the ars moriendi began to fade. Today, Dugdale argued, we no longer die well, while those who came before us did. And, though our society is different than those of years gone by, the example of the ars moriendi as a systematic, culture-wide preparation for death remains relevant for today. She hopes that through bioethics, we can learn to combat medicalized dying, recognize and accept our finitude (both individually and as a society), and build better senses of community around those who are dying. Bioethics, then, could become a vehicle for an ars moriendi for today and the future.

D. A. Carson then took a step back to reflect on the wildly conflicting views on death that have arisen in our diverse society. He posited that Christians are often more influenced by their surrounding culture than they might think, and that this twists and distorts the biblical view on death that Christians should hold in common. Instead, American Christians often consider a good death to mean “painless” rather than one which brings glory to God. After one particularly egregious example of a couple struggling with these issues, Carson stated that “the social pressure of well-meaning Christians was robbing [them] of Gospel comforts.”[2]

Carson went on to discuss eight theological “givens” that Christians must keep in mind when speaking about death: (1) humanity is made in the image of God, (2) the reality of sin and the fallen nature of the world, (3) the tension between death as both natural and deeply unnatural, (4) Jesus’ incarnation as both God and human man, (5) Jesus’ own death as the God-man, (6) the promise of eternal life for the believer, (7) the overarching flow of salvation history, and (8) the unfolding storyline of history, which allows us to establish the things of the kingdom of heaven as more important than worldly concerns. These interrelated, interacting “givens” must undergird any considerations of death and the end of life in order for the approach to be truly Christian. Only with this robust Christian understanding can we hope for our own reflections to transcend our cultural influences and be truly biblical.

To open the second day of the conference, Tracy Balboni offered an empirical perspective on end-of-life care. She began by tracing the relationship between the practice of medicine and spirituality, demonstrating that while the two have long been intertwined, the rise of empiricism during the Renaissance and Enlightenment, followed by the materialism and reductionism of the modern era, has led to their divorce, with the practice of medicine now firmly concerned with the physical alone. This disconnect is well represented by a study of lung cancer patients, their caretakers, and their doctors. When asked to rank seven factors based on importance, patients and caregivers ranked spirituality second (after the ability of a treatment to cure their disease); doctors ranked it last. Sadly, this separation has led to a medical practice that often feels sterile and dehumanizing; in the words of one dying women, she felt as if her doctors saw her as nothing more than “a body full of tumors that are killing me.”[3]

According to Balboni, “there is a huge need for spiritual care as a core component of end-of-life care.”[4] One way to reintegrate the two is through using the language of empirical medicine to show just how important spiritual care is at the end of life. A survey of cancer patients showed that 90% ranked religion as at least moderately important to them. Another demonstrated that religious belief assisted with coping with their illness, as did prayer and being part of a religious community. Spirituality also plays a key role in patient’s quality of life, especially at the end of life, with those receiving spiritual support from their medical team (not just their religious community) experiencing more hospice, less aggressive (and usually futile) intervention, and fewer ICU deaths. Thus, Balboni hopes that by utilizing a language (empirical research) that doctors understand, they will be more willing to add spiritual care to their arsenal of treating patients, especially those at the end of life.

No discussion of modern end-of-life care would be complete without consideration of euthanasia and physician-assisted suicide, addressed at this conference by Theo Boer. Focusing on his home country of The Netherlands, Boer recounted the history of euthanasia and some the requirements in his country. These requirements include a request from the patient, unbearable suffering with a hopeless prognosis and no viable alternatives, a consultation with a second physician, and regional review committees to evaluate each case. Despite these safeguards, however, Boer expresses great concern about what isn’t said. “Unbearable suffering” and “hopelessness” are not defined, and there are no restrictions based on life expectancy or foreseeable death. Relatives are not required to be notified. Patients do not have to be conscious when the euthanasia takes place. And, despite the supposed focus on “autonomy,” the responsibility is put on the physician to kill the patient, rather than the patient being required to perform the act themselves.

Boer shared several more things that alarm him regarding euthanasia in The Netherlands, including (1) that the number of people seeking it has been increasing; (2) that the number of reasons for which it is sought has increased; (3) that the Dutch public has begun to see euthanasia as a right, and that doctors thus have a responsibility to participate without regard for their own convictions; and (4) that criticism of euthanasia is largely silenced—not only is 90% of the population in favor, but there is now a taboo regarding speaking out against it. He also spoke about the fact that suicide rates have risen in tandem with increases in euthanasia, leading to a poignant question: “Can one and the same state facilitate suicide and prevent suicide?”[5]

As opposed to speaking directly to end-of-life issues, John Tilburt played off of the conference theme of “taking care” to talk about “caretaking” in the context of secular bioethics. He describes the general attitude of Christians towards secular bioethics as an “ideological swamp in need of some holy draining,” and while he is sympathetic to the concerns leading to that assessment, he prefers to think of it as “a bewitched world with decaying intellectual structures, methods, and ideologies.”[6] What does caretaking look like in this environment?

According to Tilburt, it is not a full-frontal assault on secular beliefs and assumptions with Christian beliefs. Rather, it involves gentle engagement, planting seeds and concepts, and engaging collegially in the social practice of bioethics. A caretaker Christian sustains a Kingdom presence by engaging in various modes of discourse: ethical, policy, narrative, and even prophetic. These do not generally advance the kingdom rapidly, but incrementally. As Christians, we should live lives that reflect our Christian walk. This forms an implicit argument as convincing as anything explicit we might say. It is not up to any one of us to do everything, but through these discourses we participate in the important work of culture care.

Returning to the theme of end-of-life care, Patrick Smith turned his gaze to those who are often overlooked in our society—the poor, the marginalized, and the oppressed. In these communities “on the margins,” poverty and race often combine to result in worse health outcomes and stark disparities—these people are dying poorly. Exacerbating this is these communities’ historic distrust of medical systems, which results in lower utilization of hospice and palliative care. Smith asserts that we must come to grips with the social dimensions of sin—it is ingrained in our social, political, and institutional practices. The stark disparities across time and generations cannot be reduced to personal responsibility. Behind the impersonal statistics are real people to whom we have responsibilities; when the focus is on personal responsibility, we risk losing sight of the people who are image-bearers of God.

To value life at the end of life means fighting against racial and economic health disparities throughout the lifetime. This should be a particular concern of Christian bioethicists and pastors. Disparities violate shalom, the presence of physical, material, spiritual, and relational well-being between people, animals, and God. Just as God through Christ is reconciling the world to himself, Christians have a ministry of reconciliation that may include evangelism, but also requires a commitment to justice and social relationships. For Smith, “reconciliation is an invitation to bear witness in a deeply embodied way to a new vision of seeing the world and reevaluating its multidimensional relationships. Hence there is a deep connection between the biblical vision of reconciliation and the pursuit of community and justice in the here and now.”[7] He does not offer any easy solutions or series of steps to follow. Rather, Smith reminds us that to value life at the end of life we need to value life before the end of life through the ministry of reconciliation, attending to Jesus and the grace found in the Gospel which informs and empowers our work.

In the closing address of the conference, John Kilner, who is retiring due to health issues, gave a moving, personal lecture on issues at the end of life through the lens of human dignity. In order for a dignified death to be realized, we must avoid two extremes. On the one end, we must not under-treat those at the end of life. It is not our job to determine when a life should end (such as through physician-assisted suicide); this demonstrates a disregard for the value of life and the hope that is always there when life is still present. At the other extreme, we must avoid over-treatment, which often violates human dignity. There is nothing more spiritual about artificially extending the dying process; doing so reflects our idolatry of technology and a self-centered focus on autonomy and control.

In contrast to these extremes, a Christian’s final days should be marked by prayer and care. For the one dying, prayer could result in healing (even if this healing is only temporary, or reflects an easing of the dying process rather than a full recovery). Prayer reminds us of the peace Christians can experience in the face of death by drawing us closer to our savior. And, prayer can orient us to giving, even at the end of life. Despite the weakness that accompanies the end of life, it is a time when we can give glory to God and a testimony of our reliance on him to those around us. For those of us not yet at the end of life, care for the dying should be a hallmark of the church. Taking care of those whose time on earth is at a close is an opportunity to show the love of Christ and present to the world one of the things that we as Christians are for, rather than just what we are against.[8]

The conversation around end-of-life issues does not end with these sessions. Through paper presentations, workshops, networking, and even informal conversations, participants were able to dig ever deeper into the crucial questions and Christian responses. We are so grateful to all those participants, from speakers to students to attendees, who made this event possible. We hope to see them all again next year!

References

[1] Lydia S. Dugdale, “Reclaiming the Lost Art of Dying” (plenary address, The Center for Bioethics & Human Dignity’s 2019 Annual Conference, Taking Care: Perspectives for the End of Life, Deerfield, IL, June 20, 2019).

[2] D. A. Carson, “Biblical and Theological ‘Givens’ for Responsible Christian Thinking about Death” (plenary address, Taking Care, June 20, 2019).

[3] Tracy A Balboni, “Empirical Perspectives on Care at the End of Life” (plenary address, Taking Care, June 21, 2019).

[4] Balboni, “Empirical Perspectives on Care at the End of Life.”

[5] Theo Boer, “PAS and Aid in Dying: Lessons from the Netherlands,” (plenary address, Taking Care, June 21, 2019).

[6] John C. Tilburt, “Care Taking in Secular Bioethics,” (plenary address, Taking Care, June 22, 2019).

[7] Patrick Smith, “Eyes to See, Ears to Hear: Seeking Shalom for Those Dying at the Margins,” (plenary address, Taking Care, June 22, 2019).

[8] John Kilner, “Dignity and Life on the Line: Ending Well,” (plenary address, Taking Care, June 22, 2019).