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We Need to Empower Laypeople to Care for the Dying

As religious affiliation drops, we need more lay caregivers for the dying.

Key points

  • During this unprecedented year when more than 600,000 have died from COVID, we have finally begun to discuss death as a society.
  • Historically, many Americans have died with the support of clergy. Today, many people are not religious and need help from others during death.
  • Many laypeople and clinicians are training as end-of-life doulas to help their friends, family, and community members with the death transition.
Image by David Mark from Pixabay
Mountains in the sun
Source: Image by David Mark from Pixabay

Over the last 20 years, pregnant women started inviting doulas into the delivery room to support their labor. The use of such helpers has grown exponentially, and the concept has been well-received. Now, those at the end of life are looking to “death doulas” to help support the terminally ill and their families.

Birth doulas come in to support mothers and families at a time of joy, while end-of-life doulas get involved with families at difficult times. Yet, death doulas and experts in end-of-life care can provide needed social support for families. While the acceptance of such helpers is growing, more can be done to encourage the use of these supporters during the difficult time of death.

Changes in our relationship with death

The need is increasing because our relationship with death is changing. Before the Civil War, Americans died most often at home. Many were connected to Christian institutions and had the support of clergy as they died.

Historically, some of the first secular assistance for the dying occurred during the Civil War, spearheaded by Clara Barton. This nurse, the “angel of the battlefield,” heroically cared for wounded soldiers, often using her own resources to ease their pain and feed them. She is well-known for founding the American Red Cross, a service agency that helps those in need, especially during times of national emergencies.

Now, 150 years after the Civil War, with fewer Americans affiliating with any organized religious institution, there is a need for social support of the dying. Palliative care and hospice approaches have helped many who need care and comfort as they die.

Generally, persons who accept services from hospice have been determined to have a predictable death course. Clinicians prescribe pain medications and hospice staff, such as nurse’s aides and chaplains, help make the dying person comfortable. Healthcare workers provide a reasonable amount of support before a patient dies, but assistance from professionals is lacking after a death. And there are needs besides medical issues around the time of death.

Training laypeople to aid the dying and their families

So how do we empower laypeople to both learn about care during death and embrace a holistic approach to dying? Many of us were affected by death this year as we learned of contacts dying from SARS-CoV-2. Some Americans felt at a loss, unable to navigate the death process, especially when hospitals were restricting visitors. Family and friends can provide emotional support but may not feel equipped to give appropriate assistance. Many of us felt helpless in the face of such overwhelming loss, with over 600,000 Americans dying from the virus.

Clergy and other religious workers are not going to be appropriate providers of care for everyone around the time of death, and clinicians have a limited scope during the dying process. Fortunately, new resources abound for training lay workers in how to aid the dying and how to support the family after a death occurs.

First, there are death cafes. As the name implies, these are social places where people come together to drink tea (perhaps virtually) and talk about death. Leaders don’t mandate an agenda, but they facilitate discussions about death and dying. The founder, Jon Underwood of the United Kingdom, died of leukemia, but his work carries on.

Second, resources and courses are proliferating. New reflections by a group of death experts inform us about this difficult but important topic: a collection of experiences called Bold Spirit Caring for the Dying, a primer for laypersons; Handbook for Mortals; and the classic book Dying Well. Experts boldly encourage talk about death, even sharing their own experiences as did Kim Acquaviva, a hospice and palliative expert who showcased the death of her wife.

And third, laypeople and clinicians are training as death or end-of-life doulas to help family, friends, and people in their community. The industry grew during the pandemic, as persons from other professions took the time to get trained during the various shutdowns. Doulas train to comfort, to listen, to reflect. They peacefully help with the death transition.

The time is ripe for trends to change and for Americans to influence good dying outcomes. The Better Care Better Jobs Act introduced to Congress in June proposes that funding be available for more home care. Ideally, this initiative will make a multitude of resources available to support Americans as they die, at home or at a hospital.

Americans often have a can-do spirit and feel that they can conquer any obstacle. However, death can never be completely conquered. It is an uncomfortable subject, and as a society, we have not prepared as we should. We need to strengthen social support during the death process in any way that we can.

Acknowledging that social support — emotional and tangible support — may help families negotiate death transitions is crucial. Initiatives to increase social support are often successful when intentional. Let’s commit to advocating and training community members to support the death process. After all, death affects us all.