Holding space for death, and finding meaning in it

While doctors wish to send every patient home well, death is a reality that both patients and medical staff must deal with every day. And, of course, one that every person faces eventually.

People often go through the dying process with family or friends by their side. Increasingly though, people don’t have anyone to keep them company at their bedside.

In these hard situations, the team from No One Dies Alone (NODA) steps in.

We talked with Reverend Ute Schmidt of Baystate Medical Center Spiritual Services and volunteer Carolyn Zaikowski about what the program means for everyone it touches.

Being There in the Final Hours

NODA was started by a nurse at Sacred Heart Hospital in Eugene, Oregon and has since been adopted by more than 400 hospitals across the U.S. Baystate Medical Center started the program in 2015, led by team members from Spiritual Services, Volunteer Services, and Palliative Care.

Since then, the program has trained over 120 volunteers. Many of them are employees of Baystate Health who want to give back.

“In 2015, we became aware of several situations where patients died alone with no one to hold their hands. As spiritual caregivers, we were heartbroken. We know that we wouldn’t be able to fix this by ourselves and sought out volunteer services and palliative care as partners to develop the No One Dies Alone program at Baystate Medical Center, “ says Schmidt.

How NODA Works

NODA is a program that offers companionship and support to patients who are nearing death and have no family or friends to sit with them at the end of their lives.

When a nurse or other staff member recognizes that someone is likely in their final hours, they reach out to the program to find a volunteer.

All volunteers complete an orientation and training before their first visit. After training, each volunteer is on call on certain days of the month and can be called to be with a patient at the hospital.

NODA training follows the curriculum of the first NODA program and includes information about the dying process, how to create a calming environment, and the use of music and touch.

“We incorporate a lot of self-reflection and each volunteer is invited to share their own perspectives and experiences with dying and death," says Schmidt. "We often partner with our nursing colleagues to speak to the new volunteers about specifics to expect when accompanying a dying person.”

Why End of Life Care Matters

It might seem obvious that caring for dying people is important. But in our daily lives, we tend to avoid talking about the end of life. And depending on spiritual and personal preferences, the average person may not be closely involved with rituals surrounding death.

Thankfully, programs exist to help us navigate the dying process. Baystate Medical Center offers help for families saying goodbye to loved ones. They suggest rituals like making handprints, offering a lock of hair, and gathering a remembrance circle around the bed. Staff send condolence cards and conduct bi-annual services of remembrance. Families are even offered a print out of the last heartbeats shown on a EKG.

Carolyn Zaikowski, an author and volunteer with hospice and NODA, says “ If we accept or even embrace death as the normal part of the life cycle that it is, as opposed to something to be "solved" and cured, the result is that this helps us rearrange our priorities while we're still alive so that we have more grounded, fulfilling, and compassionate lives here on earth,” she says.

What it Means to Volunteer with NODA

Zaikowski started volunteering for NODA in part because she saw a need to acknowledge and “hold space” for death.

“Death and birth are the only things that happen to all of us, and we celebrate birth but deny death, often leaving people alone in it,” says Zaikowski.

Some patients who are visited by NODA volunteers want to talk about their life and memories. Some cry. Others laugh. Some like to listen to music. Others prefer silence, with the presence of a volunteer like Zaikowski.

When asked about her first experience sitting vigil with a dying person, Zaikowski—a Buddhist meditator— says it was most similar to the feeling she gets leaving a meditation retreat. “You are required to hold a level of compassion and presence, and to put yourself down in ways we generally don't in everyday life,” she says.

Learning to sit with death

Zaikowski believes that talking about death can actually mean having a better life.

NODA volunteers often discover that death is sacred and normal at the same time. In quarterly debrief meetings, NODA volunteers share their experiences with one another as a way of honoring the persons they accompanied.

When asked how her experiences with NODA have shaped her thoughts about death, Zaikowski reflects that seeing it as something that happens to everyone and everything has had a big impact on her.

“There has to be some wisdom in admitting this. Being with dying people has really driven this point home for me on a gut level.”

In the end, the NODA program helps not only patients but also volunteers and the nursing and medical staff to understand the death process and to feel a stronger connection to the present moment.

Zaikowski suggests that we allow death to help us learn about our own humanity.

“A lot of lessons can be learned from this about what it means to be a human. To just hold space and be a witness for death is an incredibly powerful and important thing to do in order to get back to the root of what it means to be humans together, while we are alive.”

We're grateful to all of our volunteers. Learn more about volunteering at Baystate Health.

Volunteer Spotlight

Carolyn Zaikowski is a volunteer in both the Baystate Hospice and NODA programs. She is an English professor at Holyoke Community College and a writing instructor at Pioneer Valley Writers Workshop and Grub Street in Boston. Carolyn is also a novelist, poet, and essayist whose work has been published widely. More about her can be found at carolynzaikowski.com.