PROVINCETOWN — Ever since Dawn Walsh arrived in Provincetown she has been working to take fear and ignorance out of the experience of death.
She founded the Day of the Dead Festival in 2016 and soon after that began organizing “death cafés” to foster conversations on the taboo topic. (The next one is Dec. 11 at 6 p.m. at the Provincetown Commons.) A certified death doula, Walsh will begin teaching the Art of Dying as part of Provincetown’s Winter Wednesdays series.
Now, Walsh, who is a program coordinator at the Fine Arts Work Center, and two friends — Paula Erickson, a community resource navigator with Outer Cape Health Services, and Hannah Ewart, a hospice nurse — have much bigger plans. They have created a nonprofit organization and are starting to raise the money to open the Lily House, a home where people who are dying can spend the last few months of their lives. They are seeking donations, including a donation of the property itself, to replicate a model of care that exists all over the country but is uncommon in Massachusetts.
Their vision is to provide a home-like environment for three to five people, offering 24-hour care from trained volunteers in conjunction with existing hospice nurses and aides. Elsewhere in the country such homes are called comfort care homes, homes for the dying, and social model hospice homes, according to the Omega Home Network, which lists hundreds of members. The Lily House will be one. The plan is for services there to be paid for through optional payments from the patients themselves, although free care would also be supported through donations.
Why are such homes necessary? Currently on Cape Cod, which has a high concentration of elderly people living in isolated areas, there is a wide gap between what is available through Medicare-funded hospice and the needs of those dying at home, Walsh said.
Medicare pays for hospice services for anyone with a diagnosis of having six months or less to live, said Ewart. Hospice provides equipment, medicines, nursing care, home health aides, a chaplain, a social worker, and bereavement support. Cape Cod has three main hospice organizations: Beacon Hospice, Broad Reach Healthcare, and Cape Cod Healthcare’s Visiting Nurses Association.
Hospice care is, however, hardly enough for a terminally ill person, Erickson said, which is why about 80 percent of people want to die at home but only 20 percent actually do.
A hospice nurse will visit only twice a week for an hour at a time, and a home health aide usually makes about three one-hour visits per week, Ewart said. That leaves many hours in the day when a dying person is unattended. In many cases, family members cannot leave their own careers and homes to stay with a relative. Or in the case of an elderly couple, the spouse may be too frail to take on the duties required to care for a terminally ill patient, Walsh said.
Although most people in the U.S. end their days in a nursing home or a hospital, these places are not set up for dying, Ewart said. They are busy and rushed, and there is little freedom.
The Lily House, its founders say, will allow relatives to stay overnight, and the dying can have the freedom to do whatever they like: walk in the garden, watch a movie with a friend, or “make a cheese sandwich at two in the morning,” Walsh said.
“This vision came to me while I was doing hospice work,” Walsh said. “I met so many people who could not die at home. It broke my heart. They weren’t being tended to as a dying person.”
Walsh, like many people in the LGBTQ community, is single and doesn’t expect to have family to care for her at the end. She has a matter-of-fact hope for those in her own circle.
“I don’t want my friends dying alone in a room with the TV blaring waiting for their Jello,” Walsh said.
The Lily House will be a “peaceful and contemplative place where people can die with dignity and grace and with love,” Walsh said.
“This is so needed on Cape Cod,” Ewart said. “There are a lot of seniors with adult children scattered all over the country, so it can be challenging to get care at home. I truly think this has been a long time coming.”
Ewart said her grandfather died in a comfort home when she was just 13 and she never forgot the loving and attentive care he received, especially compared to the way her grandmother died with an oxygen mask and tubes unhelpfully sticking out of her in a hospital years later, she said.
The three Lily House founders are remarkable for their unblinking approaches to death.
Walsh, who has been doing hospice and doula work for just two years, has assisted with as many as 30 deaths, she said. Ewart has been there for well over 100, she said. Ewart studied hospice and palliative care in nursing school, a field that she was attracted to as a result of accompanying her mother, a Catholic school teacher in Rochester, N.Y., on nursing home visits with students when she was young.
Erickson became the caregiver for her best friend, Lauren McClellan, when she was dying of a degenerative disease seven years ago. This included running McClellan’s business, Hatch’s Produce Market in Wellfleet, and then caring for both McClellan and McClellan’s 101-year-old father, who was also dying.
“It was empowering for me to be able to help her,” Erickson said.
“We live in a death-phobic society,” Walsh said. “We aren’t supported to talk about death. And so we walk around with a great deal of fear and anxiety about dying.”
The vision of the Lily House is twofold. Along with housing and caring for people at the end of their lives, it would also provide education and after-death services and support. Walsh’s death cafés and her Art of Dying courses would be taught there and she would bring in other professionals. Being a death doula is not so unusual, she said. Just as birth doulas assist a life coming into the world, death doulas provide a calm and peaceful presence for a life leaving this world, Walsh said.
Ewart admits she herself is “death phobic.”
“That’s why I’m excited about the Lily House because it will be a place where people can learn and talk about these things,” Ewart said. “Anxiety comes from the unknown. It’s our minds that fill in the blanks.”
For more information, see TheLilyHouse.org.
