Where do the terminally ill go to spend their last days?
Up until late 2019, there was Legacy Hopewell House, Portland's only dedicated residential hospice care home. Legacy Hopewell House was closed to new patients on Sept. 30, 2019 and the property that was once a hospice house is slated to be put up for sale by 2021.
With the help of investors and donors, a group of volunteers hopes to revive it. Friends of Hopewell House, a nonprofit volunteer organization, formed in response to the facility's closure a year ago.
"We believe that over the past 30 years, Hopewell House has become a rooted and necessary part of our community, providing care and love for those approaching the end of life. The thought of this special building and property becoming something else after helping over 10,000 people die with grace over the years is both alarming and heartbreaking," the group stated in an email message to supporters and stakeholders.
For roughly 30 years, the estate formerly known to Portlanders as Hospice House, served terminally patients in the last stages of life in Southwest Portland's Hillsdale neighborhood.
The 11-bed house is currently owned by Legacy Health. Legacy operated the hospice care facility until closing it last year. This September, the healthcare company announced plans to sell the property in early 2021. A sale price has yet to be determined, but estimates from Legacy and Friends of Hopewell House put it somewhere in the ballpark of $5 million. The catch? Friends of Hopewell House will get right of first refusal on the purchase. It would be a win-win situation if not for the incredibly short deadline. Legacy is likely to put it on the market in early January.
If FHH can come up with the fair market value for the Hillsdale property, the group plans to reopen it as an inpatient hospice care facility under a nonprofit model. As planned, new management would lean less heavily on insurance reimbursements, relying instead on a combination of private funds via patient funding, bed day agreements with local health systems, Medicaid reimbursements, and philanthropy to sustain operations, said Scott MacEachern, FHH board member.
The group has launched a GoFundMe crowdfunding campaign and recently received a $500,000 donation from Priscilla Bernard Wieden and Dan Wieden of Portland advertising agency Wieden+Kennedy.
Before its closure, Hopewell House was in operation since 1987, when the property was donated by the Henningsen family. It was then taken over and managed by the Ecumenical Ministries of Oregon before Legacy Health took it over. Since its closure, Legacy has used it to hold classes and training for caregivers.
Addressing the reasons why the home no longer serves patients, a spokesperson for Legacy Health said with the rise in home-based hospice and end-of-life care, Hopewell House started seeing its demand decline, and eventually, the company determined the hospice house was no longer financially viable.
Others not affiliated with Legacy who weren't authorized to speak on the matter say disputes and lack of reimbursement from insurance companies like Medicare played a large role in the closure.
"We saw a significant drop in people using Hopewell House," Brian Terrett, director of public relations and communications for Legacy Health, told the Connection. "It got to the point where more and more staff who were counting on those shifts were being called off because there were no patients to take care of."
Terrett says what happened at the Southwest Portland facility is in line with a national trend.
"Mostly it was the fact that people are choosing to receive hospice care in their homes," he explained. "Nationally we're seeing a trend where people can get quality care in their homes, when it comes time to pass away."
That may be true, but nurses like Beth Cavenaugh know the caveats. Some patients desperately need a place like Hopewell House during their final days. She says many have acute needs that stretch beyond what family members or in-home hospice nurses, who don't provide around-the-clock care, can provide.
Cavenaugh has been a nurse for the past 24 years, the last 14 of which were spent as a certified hospice and palliative care nurse. She worked at Hopewell House off and on for eight years until 2018.
Cavenaugh remembers many of her patients, including one in his 70s or 80s with heart and lung issues, who required two nurses to move him. Before hospice care, he had only his frail wife to attend to him. She had her own health issues that prevented her from being able to administer the level of care her husband required. He ended up at Hopewell House.
Aside from administering oxygen and morphine for his respiratory symptom management, he had a full catheter and limited mobility, she recalls.
"This gentleman was really stubborn," Cavenaugh said. "I think of him at Hopewell House and how he would have these moments. At one point, he had what we thought was a heart attack, and we were able to increase his oxygen, his morphine, and his medication so that his chest pain was mitigated, and then he was able to rebound from that. He came out of that and returned to a pretty good baseline. He lived another five days, maybe another week."
"There's no way," she said, that the man's wife would have been able to bend down to change the catheter or roll her husband over to prevent bed sores.
At home, the burden of care—diaper changing, teeth brushing, bathing and symptom management—often falls on family members when a nurse isn't around.
At a hospital, care is more managed, but some eschew the sterility of the environment.
And then, there's the philosophical, religious and ethical component.
"Things come up at any time of day, like, 'my patient in room 2 is struggling with religion right now. She feels like God has failed her,'" Cavenaugh said, noting the spectrum of services and staff like nursing assistants, chaplains, and social workers that are part of the hospice care experience.
Cavenaugh now works for Ray Hickey Hospice House in Vancouver, Wash. She says she's still rooting for Hopewell to be reopened.
"When (home hospice care) works well, it is beautiful to see families gather around, and everybody steps up to the plate; grandkids are there," Cavenaugh said, "but when it doesn't work, it is messy. People shouldn't die that way."
No one agrees more than Joan Strong Buell, president of Friends of Hopewell House. She's an ardent supporter of reviving the estate to the purpose the Henningsen Family intended, largely because she was around during its inception in the 1980s as a hospice home and helped start the program.
"The way I got into hospice care was that I taught a class called birth, death and sexuality. This was in the 70's," she said. "I got interested in death and dying and the cycle of life. I worked at a hospice in England when (my husband) Tom had his sabbatical."
Strong Buell doesn't have a medical background, but has a masters degree in psychology from Portland State University, where her husband previously taught as a professor. She ended up attending hospice case conferences for years as a director of volunteers and eventually became trained as a certified nursing assistant (CNA.)
Put simply, Strong Buell and FHH believe quality of death is tantamount to quality of life, and everyone should be able to die comfortably and peacefully.
The current system doesn't always allow for that.
"The old hospice model, which Medicare and Medicaid took up … they made it so it was almost impossible to give what we understand as proper hospice care, and come out survivable financially," Strong Buell said.
The average length of stay at Hopewell House was about four or five days, according to staff and volunteers.
"The longest stay was 10 weeks and that was a young woman with four kids, right before it closed," Strong Buell said.
Dr. Eric Walsh, a longtime family medicine and hospice care doctor who worked in The Bronx, New York before he was a physician at OHSU in Portland, also points to insurance as both a necessity and fatal blow to palliative care.
"The percentage of hospices that are run by giant, for-profit conglomerates has skyrocketed over the years," Walsh said. "The possibilities of having something called a beautiful death are disappearing, because of insurance."In November 2019, shortly after Hopewell House closed, Walsh and fellow physician Ira Byock penned an opinion piece in STAT news, a medicine and healthcare-focused publication from Boston Globe Media. In it, Byock and Walsh argue that Hopewell House's closing "highlights a chasm in the continuum of health services needed to prevent people from suffering needlessly before dying."
"There was always that option of, if things aren't going well, you can go to Hopewell House, but now, we don't have that option," Walsh said. "There's a nursing home, or home or a hospital. Those people have no recourse now except to call 911 and go to the hospital, where terminal care is also unsatisfactory. The teams, nurses change every day. The vast majority of inpatient doctors and nurses don't have any specialized training in end of life care."
Walsh recently joined the Friends of Hopewell House board of directors.
Friends of Hopewell House has been in regular contact with Legacy Health. Terrett says between now and the end of the year, if Legacy gets an offer on the house from Friends of Hopewell House and it's mutually acceptable, they'd be willing to work with the nonprofit group. If another offer comes in, FHH will have the chance to counter offer or match the competing buyer's offer.
"We understand this is an important place and it holds a special place in people's hearts," Terrett said.
This story has been updated with new information.
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