Hopewell House, an inpatient hospice facility in Portland, Ore., has closed its doors.
Should anyone care beyond the families of the thousands of people who would have died badly had it not been for Hopewell House? We believe that everyone should care, because its closing highlights a chasm in the continuum of health services needed to prevent people from suffering needlessly before dying.
People like Ray Friedman, who was a colleague of ours. A retired professor of radiology at Oregon Health and Science University, he was a researcher, an avid trombonist, and a writer with insatiable curiosity. He and his wife, Nancy, traveled to 71 countries. Artifacts of their trips graced their living room; so did a grand piano and a copy of Carl Jung’s “The Red Book.” As Ray’s health declined and he developed kidney failure, he realized he was approaching the end of his life and decided to forgo dialysis, allowing his body to die peacefully. His family and his doctors supported his decision.
Kidney failure usually causes people to lose interest in eating, become progressively sleepier, and gently fade from life. Ray wasn’t so fortunate. A catheter to empty his bladder caused bleeding. He became agitated and intermittently delirious. Daily home visits by hospice nurses and their urgent nighttime house calls weren’t enough to ease his misery. It became painfully clear that Ray’s symptoms and his family’s distress could not be adequately alleviated at home.
Hopewell House was the “hospice ICU” they needed. Its highly skilled clinicians got busy the moment Ray arrived. Aided by the specialized clinical equipment and expanded formulary of medications on-site, the hospice team was able to ease Ray’s symptoms. He relaxed — as did Nancy and their family.
Medications and kidney failure left Ray sedated, but he knew he was enveloped by the love of the family members and friends who held vigil. He squeezed their hands as they held his and, from time to time, he uttered a few words of affection and gratitude. As Ray slipped from life at the beginning of August, 2 1/2 days after arriving at Hopewell House, Nancy was lying next to him one last time.
Only a handful of freestanding inpatient hospice centers like Hopewell operate across the U.S. Each is an oasis where people with complicated, intractable distress benefit from technically sophisticated treatments for their symptoms that are delivered with tenderness in welcoming, home-like settings. Comfort reliably results. People’s intimacy is respected; their dignity preserved.
By the time Hopewell House closed its doors on Sept. 30, about 10,000 people had died there and another 9,000 or so had had their symptoms brought under control and returned home under continued hospice care.
What’s forcing intensive hospice care facilities like Hopewell House to close is inadequate reimbursement for the services they provide. Overly restrictive Medicare and Medicaid regulations force programs to leave existing licensed hospice beds unfilled for fear of being fined for transgressing strict eligibility rules. From 2012 to 2017, inpatient hospice use dropped nearly 30% at Hopewell House and 15% across Oregon, decreases that are consistent with national trends. For-profit companies now dominate America’s hospice “industry” and, for the regulatory and financial reasons described, rarely open or operate hospice inpatient units.
The two of us are in our 60s and 70s. Statistically, we are next in line in our families to die, and are rightly worried about how the stresses of caring for us, and the ways we die, will affect those we love and will leave behind. Beginning in the 1960s, baby boomers reclaimed childbirth from the clutches of medicine and restored birthing as a natural part of life, albeit one that requires medical support. We insisted on allowing fathers in delivery rooms, developed birth plans, and turned to doulas, nurse midwives, Lamaze and La Leche classes, and birth centers.
It’s now time to reclaim the other edge of life. People who are dying also deserve expert medical attention that at times is highly technical. Most of us would like to be cared for at home with hospice services, knowing that there’s backup intensive care of the sort that inpatient hospice centers provide.
Public policy changes are necessary to fix this conundrum, because Medicare and Medicaid policies and payments are largely to blame. But having the capacity to meet dying patients’ needs is a matter of basic human values. Our co-authorship underscores this point.
We are palliative care doctors who disagree vehemently about the issue of physician-hastened death. Eric firmly believes that, under some circumstances, people who are terminally ill have a right to a doctor’s help in hastening death. He was Brittany Maynard‘s physician when she ended her life. Ira believes that doctors should not intentionally end patients’ lives. He worries that data from Oregon confirm the feared slippery slope of people choosing death because they feel undignified and a burden to others. He notes that safeguards within Oregon’s Death with Dignity Act are increasingly referred to as obstacles to a right to die.
But we stand together in saying loudly that dying people have a right to the best care possible.
Congress must update Medicare regulations that threaten the viability of inpatient hospice facilities. But we needn’t wait for Congress to act.
Communities can take ownership of this problem. Baby boomers, in partnership with their children’s generations, the Gen Xers and millennials, can rebuild caring continuums through a combination of community action, philanthropy, and local politics.
When the beloved Hyder Family Hospice House in Dover, N.H., closed in 2014 for many of the same reasons Hopewell House closed this year, the citizens demanded that the local government do something. Galvanized by the community, the Strafford County commissioners bought the hospice, reopened it in 2015, and established a nonprofit foundation to help cover the financial shortfalls between what it costs to take superb care of dying people and what Medicare and Medicaid pay.
Dover exemplifies a community that does what it takes to care for its own, ensuring the best care for dying people and the families who love them. It is an example we would like to see emulated in Portland and other communities with endangered hospice facilities. We might need their intensive palliative services someday. You might too.
Ira Byock, M.D., is founder and chief medical officer of the Institute for Human Caring, based in Gardena, Calif., and active emeritus professor of medicine at the Geisel School of Medicine at Dartmouth. Eric Walsh, M.D., is hospice medical director of Housecall Providers, based in Portland, Ore., and active emeritus professor of medicine at Oregon Health and Science University.
My husband has been diagnosed with Parkinson’s disease 11 years ago and we realize now that the disease is taking over quicker than we anticipated ! 1 recent hospital visit because of a blood clot in his left leg ,when he was taken to a rehab center for therapy because of too many falls at home ! 7 days in he got an infection which send him back to the hospital this time for 3 days and then I had him admitted to a different rehab that I had checked out before hand ! It was a much better place and was treated well .
But NOW it run into the ” danger zone ” with Medicare ( 20 days were gone ) and started day 21 out of 100 with our supplemental insurance ! That is so scary then when thinking of having to hire a lawyer to qualify for ” medic aide ” ! I pushed to see to have him back home with home health care which will help me a great deal in the daily care taking myself! I hope and pray that this will work for us for quite a while and research in the meantime our next options when things get worse as there is no cure for Parkinson’s that I’m sure most everyone is aware of ! It’s so sad to hear and read that hospice facility ‘s are closing because of corporate greed !
Thanks, Eric, for your wonderful work and involvement in hospice care. And you’re right: we’re next.
Up in till 2 years ago I was a Hospice and home care aide for 26 years ending my carrer in an inpatient unit in East Stroudsburg,Pa. Run by the Visiting Nurses Of Monroe county it was built with love and donations from the community.A small 6 bed unit that lovely took care of many people reguardless of there abilty to pay.Then the new Mega hospital systems took over and promised to work we us to keep it open. Due to cut backs from insurance and Medicare it was a struggle to keep providing care.Every one who worked there was there because they wanted to make a difference.The mega systems only cared about the bottom line.They fogot the community and closed our doors.But the community didn’t forget and rallied togeather and came up with the funds to reopen .I now volenteer at the house as we so lovely call it and can again serve and comfort those who are dying and there families.I’m very proud and honored to belong to a community who puts there people first and who stood up for what they belived in to bad our elected officals can’t do the same.
I am so sad to hear that Hopewell House has closed. My father was there until he passed, 5 days to be exact. We needed Hopewell House more than anyone knows. His care was superb, we all felt like we were in this all together, my family, the staff and the rest who were involved. My dad died in a peaceful wonderful place, not an antiseptic hospital. It brings tears to my eyes that people will not have access to the wonderful care they provided. We could have not done it alone. Thank you Hopewell House, we will miss you.
End of life issues are increasingly important. Dying as peacefully and respectfully as possible should be a right for all. Thank you for speaking out to save and protect what should be fostered and supported without question. I am an RN who has worked with the elderly since the age of 17.
A very moving article. Clearly hospice services are a humane necessity. I expect that the vast majority of people are not aware of the crisis that licensed hospice beds face and the need to change overly restrictive laws. Changing governmental restrictions is slow and hard, but if people are not aware of the crisis nothing will happen. No one wants to see their loved ones or themselves suffer horribly – it is a dread that most people share. Perhaps major publicity campaigns, news articles, emails like this one etc. would shine a light on the subject and motivate change. It seems to me it is the kind of subject that would get attention and action if well publicized and dramatically presented.
Agreed on all of this, we are facing a “Silver Tsunami “ as I have heard it referenced. We need to think who and where are people going to live, who will be caring for them – family, friends, paid caregivers or will they need to move into some type of assisted living. We need to work together on this, this affects all.
Who was in the Presidential Office in 2012 when these Overly restrictive Medicare and Medicaid regulations forced programs to leave existing licensed hospice beds unfilled for fear of being fined for transgressing strict eligibility rules? Why did the President in 2012, 2013, 2014 , 2015, and 2016 let this continue?
The Republican congress in 2012-2016 developed those regs and budgets. Regardless, we are in 2019.
The closing of a conventional hospice
is an opportunity to open a new right-to-die hospice.
Such an end-of-life medical service
would be especially appropriate for Oregon,
where the right-to-die first came to America.
The new Hopewell would offer all of the services
for which it was honored for many years.
But it would also allow more active methods
of shortening the process of dying.
These medical methods of managing dying include:
(1) providing comfort-care only,
(2) induced terminal coma,
(3) ending curative treatments and life-supports,
(4) withdrawing water and other fluids.
And because Oregon is a right-to-die state,
this new service would also offer (as a last resort)
(5) immediate death by gentle poison.
Read more about these possibilities in this free on-line book:
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