Volunteers assure that patients don’t die alone
Frances Iacobucci was exhausted and worried. Her husband of 64 years lay semi-conscious in a hospital bed. Knowing he may not have long, she tossed and turned in a bedside chair until sunrise, not wanting to leave him. But now her children were insisting she go home and sleep.
There to take her place by Michael’s side was Sharon Cusack, a 57-year-old teacher’s assistant from two towns over — and a complete stranger. Cusack, who volunteers for a program designed to ensure that patients do not die alone, was one of two volunteers who sat with the 89-year-old retired television repairman during hours his family could not.
During Cusack’s Saturday night shift at Milford Regional Medical Center in October, about a half-hour after Frances drove home, Michael Iacobucci passed away. Cusack left a note:
“I talked to him about the Pats game tomorrow evening and kept my hand on his shoulder to let him know he had company,’’ she wrote in a journal given to his wife.
Milford Regional is part of a wave of hospitals nationwide that are implementing volunteer programs with the goal of making sure patients have companionship when they pass away. About one-third of all deaths still occur in hospitals, despite efforts to discourage this.
Boston Medical Center, which treats many homeless patients who are estranged from their families, adopted a similar program about two years ago. BMC recruits its own employees for vigils, including the hospital’s associate general counsel, an executive assistant, and a manager in information technology.
The idea emerged 15 years ago at Sacred Heart Medical Center in Oregon, where Sandra Clarke worked the night shift as a critical care nurse. A pale, elderly man, near death, without family and fearful, asked Clarke to stay with him. He was one of her seven patients that evening and she was busy.
“Sure, as soon as I check my other patients,’’ she told him. When she returned 90 minutes later, he was gone. “I felt awful,’’ she later wrote in a newsletter about end-of-life care. Nurses have sometimes filled this role, but as Clarke’s experience shows, they often don’t have time.
The Sacred Heart program now has 50 volunteers, with 70 more people on the waiting list, and the concept has been adopted by more than 100 hospitals, many in Texas, California, and on the East Coast, said Anne Gordon, coordinator of No One Dies Alone at Sacred Heart, which is owned by PeaceHealth.
Milford has 56 volunteers who sat with 25 dying patients last year. BMC has 14 volunteers who participated in 24 vigils in 2015.
Yvonne Girard, 67, who manages a surgical family waiting area at BMC, enrolled a year ago after “just seeing how many patients have nothing, have no one.’’
Don Schumacher, president of the National Hospice and Palliative Care Organization, said hospices have provided volunteers in patients’ homes for this purpose for decades — though often it is part of a longer term relationship with the family. It helps with bereavement, he said, easing worries and guilt that the person was suffering and no one was there to address problems.
“People don’t want to walk away to get a cup of coffee and have their mom die,’’ he said.
Over the past two decades, there has been a strong push by patient advocates and policy makers for patients to die at home or in hospice, which is less expensive and often takes a more holistic approach to patients’ needs. But this has made only a small dent in the number of people who die in hospitals.
The Centers for Disease Control estimates that 715,000 Americans passed away in hospitals in 2010, down from 776,000 in 2000. Still, both figures represent about one-third of all deaths.
The reasons are complicated, said Schumacher. Some patients have chronic diseases that make them ineligible for hospice, severe illnesses that require intensive care in a hospital, or families who are afraid to have them die at home. This means there likely will be a need for hospital volunteer programs for a long while.
Volunteers attend three to seven hours of training depending on the hospital and must meet certain requirements. BMC turns away people who have had a significant loss in the past year — though many volunteers have sat with a dying relative and know it is something with which they are comfortable.
Unlike BMC and Milford Regional, Sacred Heart provides companions only for patients with no involved family, for fear of burning out its team. Volunteers, who fill two- to three-hour shifts, are given basic information about the patient, if known, such as favorite sports teams and music, and are provided with a tool kit that contains poetry books, journals, and candles.
People say it’s “kind of morbid. ‘Aren’t you like Dr. Death?’ ’’ said Monica Watson, an executive assistant and program volunteer at BMC. “No, it’s something to cherish.”
Still, Watson has taken breaks from volunteering when it’s become emotionally overwhelming. She watched one patient who suffered a traumatic brain injury wither away for five days. She then left at 7 one night to pick up a prescription for her husband and go home to her family. He died about seven hours later, in the middle of the night. Though someone was with him, she was upset. “I felt I had let him down,’’ she said.
Amanda Wright, a BMC social worker who initiated the Compassionate Companions program there, said she tries not to judge families who are not there. At BMC, volunteers have sat with a 50-year-old homeless woman who died of head trauma, a patient who had a heart attack during a major snowstorm that prevented his family from coming, and a 31-year-old man whose family did not want to be there when he died.
Wanda Martinez of Chelsea made a similar choice to keep some distance. Her brother Jose Martinez attempted suicide in July and suffered an irreversible brain injury. His family and his girlfriend ended up in a two-month legal battle over whether to disconnect life support. His family prevailed and his breathing tube was removed Sept. 30. Wanda Martinez was the only relative nearby — his mother and another sister had returned to Puerto Rico — and asked Wright to stay with him.
“I made the decision not to be there,’’ she said. “I didn’t know what to expect and I didn’t want an image in my mind that was going to really affect me.’’
Iacobucci’s husband had been sick with a heart condition for about one-third of their marriage, running through three defibrillators and four pacemakers. In October, he began falling at home and eventually could not walk. Once he was at Milford Regional, nurses gave her several options, including a nursing home, hospice, or the hospital’s end-of-life unit, where they eventually moved him. The first two or three nights, she tried to sleep next to him. Staff then mentioned the volunteer program.
No one was available the first night, but volunteers Cathy Sullivan and Cusack signed up for the next night, Oct. 17.
“I was feeling guilty as it was,’’ Iacobucci said. “This gave me peace of mind.’’
Cusack, who had cared for both her father and mother on their death beds, said sitting with a stranger is not that different; you are there to comfort. “My hand fit very nicely on his shoulder,’’ she said.
Two weeks later, Frances Iacobucci sent a thank-you card to Cusack. “I wish I could have met you in person to show my deep appreciation for such kindness,’’ she wrote.