For Elise Lark, the vision of establishing a good place to die is about our innate ability to care for each other. “It’s about changing the way we think, we report and care for those who die. It’s about creating a good place to live.”
This quote is on a flyer explaining Jim and Lisa’s Circle Home, a temporary residence that will soon be ADA compliant. As House Manager, Lark is currently adapting the 3,500 square foot Victorian home in Kingston’s historic Rondout neighborhood, transforming the structure into a safe and comfortable home for those with only a short time to live.
The house is a project of the non-profit Circle of Friends for the Dying (CFD), based in Kingston, established in 2012. The CFD will work with palliative care services to provide housing and support for people facing their last month. “When families are in the middle of this and they realize that there aren’t a lot of resources, they start looking for information and a place,” says Lark. “What people don’t understand is that hospice is not a designated place, although some organizations have a designated palliative care residence.”
People receiving palliative care can be anywhere. “They may be at home, where the majority of our people are, or they may be in the hospital,” says Lisa Wilson, executive director of the Hudson Valley Hospice Foundation. “They may be in a nursing home, they may live where they call home, but sometimes that just doesn’t fit perfectly or it’s just not doable.”
Some families do not have a safe home to spend their final months. Some may not have a primary caregiver who can look after them 24 hours a day during their decline. They also cannot afford to hire a caregiver. Jim and Lisa’s Circle Home is a community effort that strives to solve this problem.
The house was donated to CFD by Jim Gohlke, a member of an oncology support group run by Lark, as a bequest after his death. Renovations began in January 2022, and Lark hopes to welcome the first guests next year. Lark isn’t sure why Gohlke made such a generous donation, but she suspects that as a member of the oncology support group, he considered the end-of-life options and fears faced by his peers.
“Jim was part of those conversations,” Lark says. “Jim saw how his peers were talking about their plight and he also attended the funeral. Before the funeral, we would go in small groups to visit people in their homes or in different care facilities. The group became intimate in that sense. .”
Lark’s sessions, which took place in a cancer support home, helped her realize how important it is to provide such services in a home care setting rather than an institution. To create a beautiful environment for the residents’ final months, she carefully preserves the house’s remarkable original features – ornate stone fireplaces, stained glass windows, intricate Victorian woodwork and a peaceful garden. The house has a kitchen where families can prepare meals, a bedroom where parents from out of town can sleep. The rooms offer a view of the garden and the nearby park below.
“When people walk into the cancer support house, they should feel at home,” she says. “People understand home, you don’t have to explain it. People understand what it looks like and the sense of comfort and security that comes with a home.”
While CFD has hired an architect and is working on renovations with a contractor, some renovations are done by volunteers. Similarly, the future residence will have a limited staff, including a nurse, as well as a rotation system for trained volunteers. “Our trained volunteers can do anything a family member in a private residence is expected to do,” Lark says. “Our volunteers serve as extended family.” The model of care, called Comfort Care Homes for the Dying, began in Rochester in 1984. It now consists of about 30 homes statewide, acting independently but sharing information. The homes share a common care culture, core philosophy and operate in coordination with their local palliative care agency.
“The hospice steps in and provides medical supervision, and then the home, staff and volunteers serve as extended and surrogate family,” Lark explains. “It’s not a replacement of family for those who have family, but we’re extending that capacity of family and we’re family for people who don’t have family. Comfort Care Homes for the Dying shares all of the philosophy of serving those who need it most and have the fewest options, at no cost to residents.”
According to Lark, Jim & Lisa’s Circle Home will collaborate with Hudson Valley Hospice. “People will be registered at the hospice before or upon entering the house, so we will be getting referrals from the hospice, from the hospital discharge planners,” Lark explains. “Doctors can make referrals, family members can make referrals, and patients can even refer themselves. Anyone can make a referral.”
Medicare and Medicaid and many private insurance plans cover palliative care, but some people are underinsured or uninsured. “We rely on private donations from individuals and local businesses,” Lark explains. “We are not funded by the government in terms of Medicaid or Medicare or private insurance. It is a community enterprise. It is really the community that provides the financial support and in-kind donations. their time.”
In Hyde Park, the Poughkeepsie-based Hudson Valley Hospice Foundation is currently addressing the same problem on a slightly larger scale. The foundation, which serves Ulster and Dutchess counties, began construction of Hospice House in December 2021 and hopes to complete the $10 million project by 2023. Hospice House will include 14 self-contained private suites.
“They are furnished to create as much of a family environment as possible in each individual space,” says Wilson. “We encourage people to bring things from home, photos and such, to make the room as much their own as possible while they are there. Two of these suites will be convertible into pediatrics for the use of our little ones. patients, when needed. There is a full kitchen and dining room, a chapel, lounges, a great hall and a reading nook, where people can find quiet space or congregate. Every effort has been made to made to meet the needs of our patients and their loved ones.
Wherever patients call home, the hospice can provide an interdisciplinary team that includes nurse case managers, home health aides, chaplains, music therapists and other specialist therapists. Social workers are available to help patients and their families organize everything they need, from funeral planning to providing bereavement and bereavement services for 13 months.
“It’s a philosophy of care, of treating the patient holistically and supporting loved ones,” says Wilson.
Hudson Valley Hospice currently has over 130 volunteers, including 44 specially trained end-of-life doulas. Similar to how a birth doula attends a birth, these doulas can help patients plan how they want to spend their final days. This may involve fostering a comfortable environment, serving as an advocate, or helping patients create a legacy in the form of something to pass on to loved ones, such as a scrapbook, quilt, or poem. Doulas can help with guided exercises to reduce anxiety.
Start the conversation
A mistaken assumption about palliative care is that it is only available if you have less than six months to live, so enrollment should be delayed as long as possible. This misunderstanding causes families to wait too long to receive beneficial services, when in fact there is no rule determined by life expectancy. Jim and Lisa’s Circle Home is set to only accept patients with less than three months to live, but this is not the case for palliative care in general, so it’s important to know what the options are.
“No one should have to die alone, in pain or without hospice support,” Wilson says. “Everyone always says, ‘We should have called sooner,’ because a lot of people don’t realize all the pain and symptom management and support they can get. We urge everyone to call. Ask the questions. Start the conversation.”
Having the conversation can improve the quality of a patient’s last days.
When Lark looks around her makeshift office, which will one day be the visitor center for Jim & Lisa’s Circle Home, she notes how much sunlight the windows let in. “Some people might think it’s morbid, but this house isn’t about death, it’s about life and light.”