Attitudes toward death and dying differ from culture to culture and person to person. At the same time, emerging trends can be seen as the U.S. population continues to age. For example, a majority of Americans now choose cremation over burial. After a years-long fight, Medicare now covers end-of-life planning conversations with medical providers. And thousands of Death Cafés take place all over the country, helping to destigmatize dying and give people the opportunity to talk about any aspect of death they may choose to explore.
Another trend that’s grown in recent years is the use of death doulas, people who are trained to provide a range of services to patients nearing the end of life. Death doulas, also called end-of-life doulas or death midwives, can offer practical help with living wills, funeral arrangements or other paperwork that an overwhelmed individual or family facing death might find useful. But for many people the doula’s most important role is to visit and offer a comforting presence to someone who is terminally ill.
While these services are obviously valuable, the cost of a professional death doula, which can range from a few hundred to a few thousand dollars depending upon the circumstances, is surely beyond the reach of many people who could benefit. That’s why I was delighted to learn about the Doula Program to Accompany and Comfort (DPAC), a New York City nonprofit that recently gave a presentation to ICS staff.
DPAC trains volunteers to become death doulas and matches them with people nearing the end of life who have limited support from family or friends. There is no charge for these services and since the program began more than a dozen years ago, hundreds of New Yorkers facing the end of life have been befriended by DPAC volunteers.
To become a death doula volunteers undergo eight weeks of training. While volunteering they receive ongoing supervision, and have regular opportunities to meet with their peers.
Bill Keating, a retired attorney with every advantage – good health, a secure income, and an active social life – was one of the first DPAC-trained volunteers back in 2004. Lew Grossman – someone who had “never felt good in his life” was the first person Keating was matched with as a volunteer. Over more than a year before Grossman died the men bonded over food, daytime TV, and Big Band Music. Two people who on the surface had little in common grew close and Grossman, who had no friends or family to speak of, got to enjoy many pleasures that he otherwise would have missed out on as his life drew to a close.
Another volunteer doula, Mara Altman, applied to the program in an attempt to face down a long-held fear of death. Her experience with one particular patient taught Mara the folly of having a fixed idea about what being with a dying person would be like.
“I was accepted into the program, attended an eight-week course, and prepared to meet an elderly man who read Herman Wouk books and spoke of Nietzsche. Instead, in autumn of 2009, I got Jethro,” an AIDS patient in a wheelchair who Altman thought was too young to die. Jethro made fun of Altman at every opportunity and refused to do much else except stare at the nurses’ station when she would visit.
“To break the monotony,” Altman wrote, “one day I brought a deck of cards. I dealt a hand and we started playing blackjack. It didn’t matter who won. I realized what he really loved was the trash talk. He seriously couldn’t get enough.
“‘I’m going to beat your ass, Jethro.’
‘You’re crazy,’ he’d say. ‘CRAZY! You think you gonna win!?’ His favorite was when I called him a jerk. . . .
“Apparently, he loved being seen as feisty and mischievous, which is something that’s hard to maintain as a wheelchair-bound patient. I was able to give him back a piece of himself and little did I realize at the time, he was also introducing me to a new side of myself.”