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.
A gently guided departure in a loving and respectful environment – isn’t that what we all hope for? My always positive and strong yet cancer-riddled aunt chose this phasing out of life – in loving pain-free hospice care. Her last days were ultimately humane and made the inevitable so very bearable – for her and for all around her. After 17 strokes in 15 years, my father was spared further degradation, and with his full consent helped on his way to what he firmly believed to be the here-after. He was a doctor, who lived up to the hippocratic oath from the day he graduated to the day he gently passed away surrounded by his family. It is chilling that this end-of-life respect and care seems to be regressing, for whatever “reason”. At least, so it seems, in the USA that is ……..
My father passed peacefully after knowing he was 2 blocks from his home. He got to see his favorite dog. He died the night we brought him to his room. Looking out peacefully into the woods he had surrounded his home with, he was told he would probably see his favorite squirrel in the morning. Why did we not know about this terrible closing….is it too late? What can be done?
My husband was fortunate to die in our home with wonderful support from Ira Byock and Lake Sunapee VNA Hospice. We need these places for all who need some comfort in the last days.
My sister spent her last few days at Hopewell House in November 2017. The care she received was exceptional and the staff more than amazing. Words can’t express how sad this makes me as there was no way to transport my sister home due to her lung cancer and what it had done to her. I am sad to know that others won’t have them as an option.
I managed an Inpatient Unit in Columbus, GA from 2009 through 2014. We made a small profit for four of those five years. I changed positions and another Manager took over, and even though they maintained a slight profit, they closed the doors in December 2018. It really put a strain on serving the patients in this area.
So sad, this is/was a beautiful place surrounded by nature and love. I volunteered there in 2012 and it touched my heart, the care and dedication of the staff. It is a memory that lives in my heart and stays with me every day.
My son had palliative care/hospice care! He was 42yrs old & could not accept he was dying, being a mother I couldn’t either, still can’t accept he’s gone; 1/8/19 ❗️
This news breaks my heart. My daughter passed at Hopewell House from the ravages of cancer; which moved thru her body finally reaching her brain causeing her the most intense , unbearable pain that could not be alleviated at home. The care she received at Hopewell house was a blessing beyond words. The tenderness and love displayed to my girl and our family was life altering for us.
I am in tears, please can we mount a campaign to reinstate this compassionate care for our loved ones?
Penny, there is a campaign. Please go to Friends of Hopwell House on Facebook, and join us! Warmest wishes, CSB
If Medicare and Medicaid paid a fraction of what they currently pay in fraudulent “medical” claims and scams to greedy organizations that prey upon the elderly, I imagine it could afford to provide care to our dying loved ones. Such a tragedy on so many levels.
Re: “the feared slippery slope of people choosing death because they feel undignified and a burden to others.”
Why is this a bad thing? This is exactly how I feel. I do not want my dying to be a burden to my husband or my children. Having lived over 75 years, I would gladly hasten my death to spare them the misery of taking care of my dying body when I have in fact already abandoned it to, for example, dementia or Parkinson’s or even just unremitting pain. I spent years of my life caring for my stepmother, who died the most undignified death imaginable – from dementia. Please, please – after 75 years – let me die in peace from whatever it is that will kill me. I want only interventions that will ease pain and hasten death. I have loved my life and I love it still; allow my death be one that is gracious and kind to my loved ones and to myself.
The difference between a hospital and/or a long term or complex continuing care facility is that they are only concerned with keeping the patient alive. A hospice is a safe place for the individual and their loved ones to receive compassionate care that relieves pain/suffering and allows for a dignified death. In addition hospices in countries that allow for Medical Assistance In Dying recognize an individuals choice to avail themselves of this service.
I think the term “hasten death” causes emotional angst to many when the correct term should be allow natural death by doing exactly what you mention – easing your pain (and managing any other symptoms that may occur). Many times this is all that is needed to allow a natural death to be calm, peaceful and dignified. When this is allowed there is no need to hasten death, only to allow it to happen naturally. My mother died on her own terms as she stopped eating and asked for support as she transitioned from life to death. She was of sound mind and body and knew she no longer wanted to go to the doctor or hospital for her loss of appetite/hunger. She felt she had lived a long, happy and productive life and was ready for that to end as she dealt with the many consequences of aging. I am a nurse so certainly it was difficult for me in the beginning to accept her decision not to “fix” something, but I have also worked for hospice for the last 18 years so certainly knew to support her decision in every way that I could. It would have been very different if we had pursued aggressive measures and testing in an acute care setting, taking up precious time with her we would never get back, as well as the possibility of her suffering from those aggressive measures. She was a beautiful woman in all ways and she left us with wonderful memories up until the very end of her life. She was surrounded by her family during the 8 days that followed, thanking us for supporting her decision and smiling at us every time she awoke. She died in our hospice house, just as she desired, with my family having no regrets, and nothing left unsaid. No better ending than that.