End-of-Life Doula Program at Valley Hospice is a First for NJ

You might think it takes a special person to voluntarily stay by a stranger’s side while they pass from life to death, but to the three and a half dozen people serving in the Valley Hospice End-of-Life Doula program, to do so is both a privilege and an honor.

The program, created by Henry Fersko-Weiss, LCSW, offers hospice patients and their families a tour guide through the dying process. Instead of death being cold and clinical, as in a hospital setting, the dying can remain home for their final hours, while the family is assisted by volunteer doulas sitting vigil in shifts around the clock.

The doula’s primary objective is to help the patient achieve a “good death” while also providing a measure of comfort as the family enters unknown territory.  All of the doulas in the program agree it is a gratifying experience.  “You are welcomed into the family to share a very intense and intimate time with them,” one EOL doula said. “It is an honor to be invited in.”

“People are so anxious and nervous about death”, another added, “and having a doula to guide the family and the patient makes such a difference.  It releases a pressure valve of fear for the family.”

The volunteers in Valley Hospice’s End of Life doula program come from diverse backgrounds. Some have worked as hospice nurses, others as birth doulas and others have no medical background. The one thing they share is a feeling of being called to serve in this capacity.

“After going through this with someone you love, you realize you could do this for a stranger,” one member said. “It gives you strength and courage to do it for others, so they don’t have to be afraid.”

Fersko-Weiss Henry Fersko-Weiss, manager of social services for Valley Home Care & Hospice,  created the first End-of-Life Doula program in 2004, while working at a New York City hospice. Upon coming to Valley Home Care and Hospice in 2007, he brought the program with him, creating the first and only program of its kind to New Jersey.

“A friend was becoming a birth doula and I saw the parallels,” he explained, noting as a field social worker he had seen too many unfortunate deaths. “When we started doing this work, I realized this is so right. Every death should have a doula.”

The methods used by EOL doulas are often similar to those of birth doulas:  guided visualization and affirmation, light therapeutic touch, aromatherapy, and rituals. Similarly, both doulas work to alleviate fear in the process.  Instead of a birth plan, the dying and their family create vigil plans.

“People are helped through conversation about their final hours to face dying with truth and courage,” Fersko-Weiss explains.“The emphasis in the vigil plan is on the kind of dying process and atmosphere the person and their family want.”

In this busy day and age, you may wonder how people find the time to volunteer for a program such as this. After the initial training, which takes place over three evenings and two Saturdays during a two-week span, the time constraints put in depends on the involvement each volunteer wants.  Once a month, members get together on for a meeting. When a vigil comes up, the 40 members on the team volunteer to sit for shift that depends at the time on what is possible given their other responsbilities and their lifestyle.

The team communicates through email and phone calls, and when they are needed, they are eager to help. Vigils typically last 30 to 50 hours. The shortest vigil lasted less than an hour and the longest lasted a week and involved 23 volunteers.  The doulas noted that when it is time for a vigil, many of them find the time. If they don’t have time to spare, they decline, but all are at the vigil in spirit.

“We are the only people there for no reason other than wanting to be there,” one doula noted. “We have no agenda other than wanting to help. There’s no professional or personal agenda, no family bond, just a genuine desire to help.”

A new round of training is coming up in June, consisting of three evenings and two Saturdays. June 2 from 6 to 9 p.m., June 4 from 9 a.m. to 6 p.m., June 6 from 6 to 9 p.m., June 10 from 6 to 9 p.m. and June 11 from 9 a.m. to 6 p.m.

To learn more about the program or to register for training, contact Maria Salerno, Coordinator, Volunteers and Bereavement Services, at msalern3@valleyhealth.com or at 201-291-6243.