By Alison Ramsey, IAHPC Newsletter Editor
History is filled with examples of single-minded individuals who brought about social change. This is a slightly different story: how a single cancer patient inspired an Australian couple to devise a program that strengthens social bonds to achieve, free of charge, a primary goal of palliative care: a good death.
Dying At Home is an innovative palliative care program particularly suited to economically struggling communities ill-served by medical providers. All care is provided by the community, initially guided by a volunteer leader. It has thrived in Limpopo, South Africa; Chin State, Myanmar; and Maucatar, East Timor. And this is just the start.
“It was the experience of supporting a patient, Bill, at home in his last days” that sparked the idea, says Dr. Helen-Anne Manion, a palliative care physician whose recently-deceased husband, Gerald, was a cancer counselor. “It was a tipping point in our careers.”
“Bill’s sharing immediately connected with our deeply held conviction that the care of the dying person must change from an exclusively medical focus, to care in the home by family, friends, and neighbors whereby all are enriched.”
“Everyone will die once, so we have to get it right the first time.” Dr. Richard Chye
Together, the couple forged a compact, go-anywhere program — ideal for areas with scant or non-existent medical resources, but apt for high-income countries too.
Dying at home, a tradition lost in high-income countries, is rebounding. For the first time in decades, the most common place of death in the U.S. has shifted from hospital to home, according to a study published in the December issue of the New England Journal of Medicine.
The Dying At Home program is run by a small, tight-knit group: Dr. Manion, her son and media expert Anthony Mannion, and Kathleen Dansie, a school teacher who designed and helps implement the training programs.
Privately run and financially beholden to no one, Dying At Home asks for nothing but participation. It goes only where invited and each country or region is researched to incorporate local culture, customs, needs, and resources. But no amount of preparation can predict all challenges.
“We adapt on the fly,” says Dansie. “When we got to Maucatar there was no water, no electricity, the roads were horrendous. It wasn’t until the second day that I realized our hosts were going out at 5 a.m. to walk a kilometer to collect water for us to use... I knew they had lots of power outages, but I also knew they had a generator — which was broken down. We didn’t bring enough power packs or bottles of water.”
Adjusting included a trimmed program. “We did one-day programs with different groups of people, picking the most important aspects.”
“The training was wonderful,” recalls Dr. Manion. “Adults came with babes in arms, and even the high school children had the day off to attend.”
“When people come to us, we know that they’re at the end of their life. But their life has not ended.” Dr. Helen-Anne Manion
Sister Gilbert, the director of a maternity clinic and Mother Superior of her Order in Timor Leste, and has taken over training there. Follow-up, now, consists mostly of keeping her supplied with Dying At Home booklets for carers (translated into the user’s language), including “Free Medicines” that details how to relieve pain and discomforts experienced by the dying.
“It’s a simple program that, followed step by step, has profound effects,” says Dr. Manion. “It’s all about love. That’s the power that drives it.”
In village visits, a leader teaches the program to the family caregiver and helps prepare The Gathering, which brings together everyone who will take part in caregiving. Needs are listed and duties distributed among those who attend. They are aided in their work by the booklets, which expand their understanding of how much they can do for the person who is dying.
“This is one of the best programs for the people of Timor,” reports Sister Gilbert. In a culture that is so uncomfortable with death that the dying can be neglected, Dying At Home has changed lives. “People who had felt alone now feel the joy of having others near,” and are comforted by tangible, daily care.
“It was a social and an emotional event in our family, and we will treasure it for the rest of our lives.” Dr. Fiona Stanley, who enacted Dying At Home for her husband.
When first launched, in the 1980s, “it was daring for people to say they wanted to die at home in Queensland,” says Dr. Manion. “There was no support.”
Today, Rev. Dr. Mawi Van Ro has trained more than 600 teaching families in Myanmar; the Limpopo District of South Africa brought Dying At Home to those with HIV/AIDS; and around 200 people have been trained in East Timor — a number that is ever-expanding.
“Leaders are coming in increasing numbers to teach in their villages... As several of our trainees have said, we have brought a new culture of compassion for the dying and especially for their family caregivers, which we have seen as a most significant aspect of Dying At Home everywhere,” says Dr. Manion.
Dr. Manion has advised a palliative care program in the Ukraine, is now in discussion to bring the program to Mexico, and hopes that Dying At Home will spread soon to Latin America and North America. She invites anyone interested to visit the website, then email: firstname.lastname@example.org
“It’s the most humane way for you to die.” Dr. Fiona Stanley
Learn more about the Dying at Home Program in the IAHPC Global Directory of Palliative Care Institutions & Organizations. Dr. Helen-Anne Manion is an IAHPC member.