Magazines 2021 May - Jun Living with dying

Living with dying

17 May 2021 By David S. Robinson

What does the body of Christ look like after medical assistance in dying (MAiD) has been legalized in Canada? A theological ethicist offers another, ancient way forward

Starting in March 2023 MAiD will also become permitted when mental illness alone is the reason.

The legalization and current expansion of medical assistance in dying (MAiD) has radically reshaped the way we die today. It affects both those who opt in and all others as well, "since those others will now be doing something they were previously not doing, namely choosing not to die," as ethicist Michael Banner argues in The Ethics of Everyday Life (Oxford, 2014).

To go on living in the face of debilitating illness, physical or mental, now requires justification, especially if we are "costly" patients.

MAiD legislation was authorized by the Supreme Court in 2015 with certain safeguards in place, but the passage of Bill C-7 in early 2021 shows that access is swiftly expanding. In brief, the bill removes the clause that a candidate’s natural death must be "reasonably foreseeable." Starting in March 2023 MAiD will also become permitted when mental illness alone is the reason.

Bill C-7 represents not only a discrete law, but a broader change in medical culture. As a group of Canadian physicians recount in an article for the World Medical Journal, the introduction of MAiD has led some doctors to deprive severely disabled patients of care. Other doctors show ambivalence about resuscitating patients who have attempted suicide.

Advocacy will continue on both sides of the issue. But merely calling for change in the Canadian public can neglect the fact the Church is a public in its own right, called to live out a fuller theological ethics of dying. Such an approach requires discerning the cultural changes that have made MAiD thinkable. It also takes us beyond reaction into faithful and creative discipleship in a culture where the practice has become a reality.

To those ends we begin with the significant moral task of describing the situation. To know what to do, we must know what is happening.

Truthful speech amid euphemism

Christians are called to tell the truth. We are committed to telling the truth of the gospel, the Good News that God is healing our sickened world in Christ. We also pursue truthful description in public speech, not least to show ourselves as trustworthy witnesses. This work involves challenging misinformation and conspiracy theories, and also involves thinking critically about political and legal terminology.

Such a task requires careful discernment. Because MAiD is a deeply personal issue with life and death stakes, some condemn the practice in extreme terms. But sheer denunciation, if it has not first discerned the reality it addresses, is too weak. Condemnation of a practice someone clearly doesn’t understand will be easily dismissed as simply off target.

living with dying

ILLUSTRATION: JANICE VAN ECK

However, our connections in the body of Christ can help us discern the reality the term MAiD represents and think wisely about it. As a theologian I have my own expertise, and I have been given an immensely resourceful community of fellow believers, including health practitioners, professional ethicists, legal scholars, and of course, an array of elders with profound life experience.

This body includes those who know chronic or even intolerable pain and so speak in extremis. In their company I often must simply sit as Job’s friends, in their week of silent, shared grief. These people can help us discern something about the complex issues surrounding the end of life. To speak truthfully we need to have truly listened. The mouth can’t say to the eye or the ear, much less to the nervous system, "I have no need of you."

Once I have learned what I must, there comes a time to speak. Speaking requires reckoning with how our terms for death have changed. It’s hard to think of a more innocuous acronym than MAiD, a term that also refers to a young woman or a personal attendant. How could anyone question the desire of a dying person to call for the "maid"?

With a change in terminology, we have suddenly come a long way from the more accurate "physician-assisted suicide." MAiD also now competes with palliative care, which is its own form of medical assistance to those who are dying.

The euphemism did not begin with MAiD. Euthanasia means, from its Greek roots, good death. So what is a good death in the eyes of our society today? In brief, autonomy – being a law unto yourself. This is central to most arguments in favour of MAiD – the practice supposedly upholds autonomy because the patient can choose when and how she or he will die. Compassion seems to require that we enable such choice.

To be sure, relative autonomy is a value Christians should uphold. God’s sovereignty does not merely override human agency, but sustains, empowers and guides it. So there is good reason to honour autonomy at the end of life.

However, is the choice for MAiD truly autonomy at work?

With this presumed act of autonomy, the patient and physician foreclose on all future autonomy. The dead no longer decide. The choice also suggests the patient is not treating herself as an end, but as a means, as philosopher Immanuel Kant argues. Some other end comes to displace the self’s existence, whether that be a tolerable condition, an unburdened family or productive membership in capitalist society. While self-sacrifice in some circumstances is praiseworthy, in others it reveals systemic sin.

Does everyone actually have access to such autonomy as the privileged classes conceive of it?

One of the striking contrasts of our technological society is that some are starting to pursue socalled radical life extension, while others, with fewer resources, feel pressured to opt for medically assisted death.

Who is the autonomous actor who opts for one instead of the other? To answer that question truthfully, a patient’s physical and psychological states should not be treated in isolation from their social and material conditions. That means deliberations over MAiD also require a hard look at economic inequality, racism and prejudice against persons with disabilities.

While truthful speech is critical, as Christians we do not merely describe social trends. We are immersed in a network of relationships, and another person’s unbearable pain has a claim on us. As those who frequently keep death out of sight and mind, are we willing to live with the dying?

How we can face death together

"My mother is dying a painful death, and it has everything and nothing to do with Covid-19." So begins LeRhonda Manigault-Bryant’s powerful New York Times essay on the experience of familial separation because of pandemic restrictions.

"I can’t be near her, touch her, cook for her, kiss her or tell her all the things that I don’t yet know I need to say," writes the Massachusetts professor.

Her mother remains alone with a fatal illness, but without medical insurance, an elder care facility or a hospital. This is not an isolated case, however, for "hers is the body of all the Black people at the bottom of the pandemic."

The longing expressed in Manigault-Bryant’s essay has been deeply felt across our societies. Having grown accustomed to a certain removal of death from view, the novel coronavirus has reminded us of death’s power and immediacy while restricting our access to those who are dying. Many of us have been reacquainted with our desire to accompany our loved ones through the processes of sickness and death.

Such a resurgent longing puts us in a good position to recall earlier forms of social accompaniment in death, for we die differently than Christians in the past have died.

Chicago bioethicist M. Therese Lysaught demonstrates that dying has been relocated in three ways in the late-modern era.

First, there has been a change in social location. In contrast to the early 20th century, dying now occurs more frequently in medical institutions than in homes and communities.

Second, there has been a change in spatial location. In comparison with the Middle Ages when hospitals were first being established, medical institutions today are no longer architecturally connected to churches and monasteries.

Third, there has been a change in temporal location, as dying has gone from being a process that involved years of preparation to a narrow concentration on deathbed decisions.

As Christians we are not only the passive recipients of these shifts, nor are we merely objectors. We have a God-given autonomy, empowered by the Holy Spirit, to live anew as the body of Christ. We are also entrusted with a living and active Word. So how can we change a culture, perhaps even make a culture, in a way that effectively responds to the challenges posed by MAiD?

A Christian culture, which we are as the Church, will be one that opts for compassion. But this is a compassion that costs us. We do not only enable another to die, but seek to sustain them through their pain, even their despair.

to approach dying as an art
 

To that end, we have to retrieve the ethics of an earlier era. Even though the New Testament was written centuries ago, by God’s Spirit it is ever timely. One key passage whose social power is often overlooked is 1 Timothy 5:3–10 where Paul calls for the creation of a list of widows. These people were often older, acquainted with grief, and socioeconomically vulnerable because of the loss of their immediate family support.

While there is an element of ministry to widows here – they were incorporated into the Church and provided with material assistance – to stop there is to miss the true power of the priesthood of all believers.

In practice they became an order of ministers in their own right, which is fitting because Paul addresses them in-between his qualifications for elders. They are to be so honoured, in part, because of their reputation for good works including their hospitality and help of the afflicted.

In light of this biblical precedent, and as an ethical response to the relocation of death in late-modern culture, Lysaught calls for the formation of a new ministry of accompaniment. This would involve some form of communal living for a group of varying ages and abilities. Perhaps located in a house or building near the local church, it could include a hospice room for the care of dying members.

"No longer isolated in their homes or farmed out to siloed retirement homes," Lysaught writes, "through architecture, ministry and liturgy, the aging and dying would be more visibly incorporated into local congregations."

This is one way the Church can creatively respond to issues of impoverishment, marginalization and loneliness among an aging population. In so doing, it would create a context of mutual service and spiritual formation within which to ask the hard question that confronts us each in turn – How do I die?

How we can prepare for death

Given the complexity of end of life ethics, many theologians and ethicists have been looking back to the Christian tradition of ars moriendi, the art of dying. In the 15th and 16th centuries, there were several popular manuals on preparing to die which contain valuable wisdom for our current challenges.

But is it appropriate to speak of dying as an art? If so, it is not to suggest that death is a kind of technique, as in a technological fix. Nor is it intended to conceal the terrifying reality that death is, biblically speaking, an enemy.

What these books show is that the dying process, awful as it often is, can be communal. Take for example the Reformed preacher William Perkins’ Salve for a Sicke Man (1595), one of the most popular English books on dying. Perkins speaks of two duties – the duty of all Christians to visit those who were dying, to show compassion and encourage hope, and the duty of the dying person to appeal for others’ help in renewing their faith and repentance.

The art of dying tradition also shows us the process of preparing for death is lifelong and not to be narrowed to a decision. Foresight extends well beyond any advance directive to encompass a steady growth in Christian virtues. The idea is that we spend our lives cultivating these virtues – faith, hope and love primarily, but also humility, courage and a disposition to forgive – that will sustain us in the end.

As we abide in Christ through the many instances of suffering in life – chronic illness, unemployment, relational pain – we become more adept at endurance for the time when we become in the end a patient.

To approach dying as an art is not to be confused with self-making or virtue acquisition for its own sake. It is about keeping, and being kept in, company with Jesus. "I want to know Christ," Paul writes in Philippians 3:10, "yes, to know the power of His resurrection and participation in His sufferings, becoming like Him in His death."

Consider Jesus’ final words from the cross. He is immobile and in excruciating pain. His breathing is constricted, so speaking is laborious. Yet He forgives, sustains others in need, laments, seeks help, cares for His family and commends His spirit to God. The powers of God flow through Him, manifest in abject weakness.

Our sufferings differ, by God’s grace. But that same abundant life is ours, both now and at the hour of our death.

David S. Robinson of Coquitlam, B.C., is adjunct professor of theology and ethics at Regent College, and author of Christ and Revelatory Community in Bonhoeffer’s Reception of Hegel (Mohr Siebeck, 2018).