Dying alone

Guest commentary by Ann Conklin – This piece was written during her participation in a Louisville Institute grant project, “Congregational Life and the Dying: Renewing Resurrection Hope in a Medical Age,” which is facilitated by J. Todd Billings.

What would it mean for our path of dying to reflect our life in Christ, centered on liturgies of Scripture, prayer and presence with the suffering? Can the church provide an alternative to the cultural liturgies of medicine, tests and never-ending treatment, which so often lead to dying alone in a hospital or care facility?

Nobody wants to die alone. Nobody wants a beloved friend, family member or fellow congregant to die alone. It was therefore both unfortunate and regrettable that Edward, a member of the congregation I serve as pastor, died alone.

The congregation steadfastly supported and surrounded Edward in his life. We brought meals, arranged for home health aides, visited him at home and in the hospital, sent cards, called him when he moved away to be with family and visited him upon his return to our area when he, again, became hospitalized. Due to his multiple medical needs, Edward’s family was confronted with what Atul Gwande, in his book “Being Mortal,” starkly notes: “Rarely is there nothing more that doctors can do.”

Already on dialysis, after being resuscitated multiple times Edward was then artificially ventilated. This series of interventions, in combination with Medicaid health insurance, led to his isolation and, ultimately, his dying alone. You see, there were no facilities in Edward’s home state that would accept someone with these complex medical needs and this type of insurance. He had to be transferred to another facility in a neighboring state.

Four of us visited Edward in the days leading up to his transfer to a place where he had no family and no friends. We shared memories and even laughter, but there was a heaviness in the room as the unspoken reality of this most likely being our final visit hung in the air.

We were with Edward during his life, but we were not able to be with him in his death. We had hoped to visit him again in his new location, but this never came to pass. Precisely because of the “heroic” medical efforts to extend Edward’s life, he died alone.

As Edward’s pastor, I wonder what those final days were like. I wonder if he had anyone with whom to share his long and fanciful stories of life in Ghana before he immigrated to the United States in the early 1980s? I wonder, trained as a nurse in Ghana and then working in respiratory therapy in the U.S., what his experience was in being on the receiving end of this kind of life-sustaining medical care? I wonder if he sensed God’s presence with him and found hope in his belief in the resurrection of Jesus Christ?

Our forbearers in the faith from Erasmus to Luther depict Satan visiting the deathbed to “perform a scrutiny of faith,” (according to Christopher Vogt in “Patience, Compassion, Hope, and the Christian Art of Dying Well”) and many feared a struggle with forgetting God at the end of life. One of the aims of the medieval tradition of ars moriendi (the art of dying) is “fortifying the dying in faithfulness.” This is the role of the faith community and one that is too often extracted from us as more and more people die in hospitals rather than at home, as was the case with Edward.

Doctors and other medical personnel are beginning to take note of this, and surely the hospice movement has helped to provide an alternative course. However, the church itself needs to reclaim its critical role in the dying process and understand anew the importance of being present with and for the dying.

The last days and final moments with a loved one or someone with whom you have worshipped alongside are precious and often quite poignant. An opportunity to say goodbye, shed tears together, read Scripture, sing and pray together and offer a final word of comfort, blessing and love is something to be treasured.

The thought of being alone at the end of one’s life can be terrifying, unearthing other fears such as isolation and exclusion as well as uncertainty about what lies beyond the grave. Whether we acknowledge it or not, the fear of death is very common.

We find comfort in imagining ourselves surrounded by loved ones, encircled by friends and family in our last days while drifting off peacefully into whatever lies ahead. Indeed, we were created for relationship, in life and in death. Formed in the image of our relational Triune God, we have an inherent need and a deep longing for relationship with God and with others for the full duration of our days.

This all becomes very real and pressing when faced with one’s mortality. As we find ourselves living in an increasingly medicalized age, we would do well to think about the details of our dying: how, where and with whom we would like to enter into our last days, if given the time and opportunity to make such decisions. Otherwise, we may find ourselves or our loved ones unexpectedly caught up in “the seemingly unstoppable momentum of medical treatment.”

As Gawande also notes in “Being Mortal,” the issues of how we want to die and how much medical intervention we want to receive have gotten attention lately due to the exorbitant expense of end of life care. Indeed, “in the United States, 25% of all Medicare spending is for the 5% of patients who are in their final year of life, and most of that money goes for care in their last couple of months that is of little apparent benefit.” Research has shown that patients who receive life prolonging treatment such as mechanical ventilation or electrical defibrillation actually experience “substantially worse quality of life in their last week than those who received no such interventions.” Equally significant is that their caregivers were three times as likely to suffer major depression after their loved one’s death.

As Christians, this is clearly not what we would desire at the end of life. And cost, though important, should not be our central concern.

We want our final days shaped by Christian liturgies of Scripture, prayer and presence rather than the cultural liturgies of medicine. As those who belong to Christ, we can help cultivate and prioritize these liturgies, rehearsing them in worship and bringing them to the bedside of the dying. When we live well, we are more likely to die well, and “dying well is not possible alone,” says John Witvliet in “Worship Seeking Understanding.” Witvliet, the director of the Calvin Institute of Christian Worship, points out, “Dying is a social act. In the Christian community, one never dies alone (or at least the Christian community should not let this happen.)” The Christian community ought to face death together.

Though not limited to the church, this is something we as the church have to offer, and it is a gift of grace. We can help people to practice the art of living in preparation to enter into the art of dying. We can help cultivate Christian liturgies of dying to replace the secular and medicalized liturgies of our day. After all, central to our faith is the story of Christ’s death and our hope lies in his resurrection.

We weren’t able to do this for Edward. My prayer is that we can more often do this for those whom we love and serve as we proclaim the life-giving and hope-filled gospel of Jesus Christ.

ANN CONKLIN currently serves as pastor at Eastminster Presbyterian Church in Grand Rapids, Michigan. Prior to her call to seminary, she had a career as a physical therapist. Ann and her husband, Peter, have been married for 29 years and enjoy being parents to Lily (20) and Lewis (17).