Hospitality at the end of life: Owners open their homes to terminally ill

Yahoo

18-02-2025

In a pastoral Vermont valley, a former hospice chaplain named Suzanne runs a retreat center for artists, health-care workers and educators - and, since mid-2023, terminally ill people seeking a safe, peaceful place to die.
Suzanne, who asked that her last name not be used for privacy reasons, is one of a small but growing number of property owners who have been providing space to people coming to Vermont for physician-assisted dying since the state lifted the residency requirement for a 2013 law allowing terminally ill patients to end their lives on their schedule.
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'The thought of someone traveling to Vermont simply because it's a legal state, and not having a home, and dying in a hotel ... it made me cry,' said Suzanne, who was inspired after hearing a radio report about the lawsuit that forced Vermont to lift the requirement.
A similar housing infrastructure for those wanting to die on their schedule is developing in Oregon, which lifted its assisted-dying law's residency requirement in July 2023, two months after Vermont. Of the 10 states and the District of Columbia that allow medically assisted dying, they are the only jurisdictions to have done so.
Accommodations typically include extra rooms in private residences, and apartments or second homes that people have traditionally listed independently or through Airbnb or Vrbo. Few are like Suzanne's, specially designed for patients and the loved ones by their side when they die.
What the properties have in common is that their owners support the death-with-dignity movement, which in 1997 led Oregon to become the first state to legalize medically assisted dying. Oregon's law, which became a template for other jurisdictions, included residency requirements in response to concerns the state would become a death destination, with bodies washing up on its beaches, recalled Peg Sandeen, CEO of the advocacy group Death With Dignity.
That hasn't happened, and lawmakers in some states, including New York, are introducing assisted-dying bills without residency requirements. Montana, where a 2009 court ruling made the procedure legal, doesn't have clear-cut residency rules, but people tend not to go there as they do to Vermont and Oregon, according to the advocacy group Compassion and Choices.
When Vermont lifted its residency requirement, property owners wanting to open their homes to patients seeking medically assisted dying began contacting Patient Choices Vermont, the nonprofit that helped enact the assisted-dying law, known as Act 39. PCV has transitioned into a resource for end-of-life organizations in other states seeking clarity about the law, and everyone from physicians to patients navigating it in the state.
PCV's Wayfinders Network, an independent group of hospice nurses, case managers and death doulas, reaches out to doctors, hospices and social workers 'letting folks know we exist, and that people can get support,' said Kasey March, a network member and death doula whose services include companionship, comfort, education and guidance to people at end of life.
Terminally ill patients ending their lives prefer the comfort and privacy of a home over a hotel, said March, who keeps a list of four or five accommodations and is always looking for more. She learns about them from friends, acquaintances and fellow Wayfinders.
'You want somewhere that no one is going to knock on your door and ask what's going on and make you feel uncomfortable in some way, shape or form,' she said. Price, availability and location vary. Most people seeking medical aid in dying have mobility challenges and seek accessible accommodations close to urban centers, PCV President Betsy Walkerman said.
Cindy, a consultant who lives on the top floor of a two-story duplex in Burlington, Vermont, and whose full name is not being used for privacy reasons, discounts her short-term rental rate for those using the ground floor for Act 39. 'I would not want money to be an issue, so I just make it work,' she said.
Suzanne works on an offering system - if someone makes a donation, she puts the money back into the property, building the infrastructure for future patients.
According to the Vermont Department of Health, as of June, at least 26 people had traveled to the state to die, accounting for nearly 25 percent of the reported assisted deaths there since May 2023. Suzanne hosted three; Cindy, two. Cindy has another scheduled for late January.
As with others in their situation, neither lists their space as an assisted-dying destination because they can host only someone who has met strict eligibility criteria, including having less than six months to live. Only a doctor in Vermont can make that determination, and a second consulting doctor has to confirm it.
'The doctors are the ones who are the sentries at the gate,' Suzanne said. 'If you don't have a doctor or meet the eligibility requirements, you can't voluntarily die using Act 39 in Vermont.'
As with many states, Vermont has a doctor shortage that can make it hard even for in-state residents to obtain care. Finding a Vermont physician from out of state is even more challenging, as a family that used Suzanne's center last summer discovered.
For a month in early summer 2024, the younger daughter, who lives in a western state and asked that her family name not be used for privacy reasons, called at least a dozen palliative care clinics in Vermont and Oregon for her father, 78, who was dying of cancer. The earliest appointment was in September, in Vermont. She wasn't sure her father would live that long, and he'd made it clear he did not want to die in a hospital, surrounded by strangers.
When she learned that a palliative clinic in Vermont had an opening in August, the family flew there, and the father was approved. The doctor and clinic program director provided Suzanne's contact information and also suggested the family call hotels and Airbnbs and be up front about booking a room.
The daughter called Suzanne first. 'I'm so grateful I didn't have to make any of those phone calls saying, 'I need to make a reservation for someone to die here,'' she said.
Two weeks later, the family returned to Vermont for the father to die. He and his wife stayed at Suzanne's. Their adult daughters, son-in-law, and granddaughter stayed at a hotel five minutes away.
'Suzanne was very accommodating,' the man's wife said - she gave the family free run of her house adjacent to the center, installed a full-size bed in front of the picture window so the couple could enjoy the view while they rested together, and welcomed the rescue dog the older daughter had brought for emotional support.
'I was able to spend the last night with him,' the man's wife recalled. 'The view was amazing - there's butterflies all over, there's hummingbirds, there's a gazebo on the property. You can see the hills from the big window. We said afterwards, 'It's exactly what he wanted - other than being in his own home.''
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