BERKELEY, California ― Hospice is an integral component of end-of-life care, a service designed to deliver supportive care to those in the final phase of a terminal illness. The aim is to make the patient as comfortable and free of pain as possible.
However, now that medical aid in dying (MAID) is available in several states, as well as in some other countries, the question arises: should this option be included among the services that the hospice has to offer?
This is a new development, noted Thalia DeWolf, RN, CHPN, clinical coordinator, Bay Area End of Life Options, Berkeley, California.
"Hospices have been providing good end-of-life care for decades, long before the utilization of medical aid in dying," she said. "Good end-of-life care is essential, now more than ever. More Americans are dying at home, and many of them on hospice care.
"Attentive care for the terminally ill patients, until their last breath in hospice, is the hospice ideal," said DeWolf.
"And because aid in dying is being increasingly requested by hospice patients, it is being integrated into hospice care, and many hospice doctors are acting as attending physicians and consultants in the entire process," she said.
DeWolf was speaking here at the inaugural National Clinicians Conference on Medical Aid in Dying (NCCMAID), where she also moderated the session on the role of hospice in MAID.
Although many physicians are ethically opposed to the idea of MAID, this conference drew an audience of more than 300 clinicians who wanted to hear more about it. It featured speakers who talked about their own experience with implementing the process.
Integrating MAID Successfully
When Hospice by the Bay was founded in San Francisco in 1975, it was the first hospice to open its doors in California and was only the second in the whole of the United States.
The facility has been there for 45 years and is very well known in the community. The not-for-profit, community-based hospice serves an average of about 520 patients daily (including children) and operates in six Bay Area counties, commented Senior Clinical Director Laura Koehler, LCSW, ACHP-SW.
Since June 2016, when MAID was legalized in California, 150 patients who were being cared for by this hospice have died under the auspices of this program, she told the meeting.
The integration of MAID into hospice care was relatively seamless, she commented. Once the California law went into effect in 2016, "we got all of our staff together and established a robust program," she said.
There was some apprehension at first, Koehler concedes. There was concern as to how patients and staff would feel about it.
They began conservatively, but the process has evolved. "Four years later, we have changed and grown a lot, the reason being that we got a lot of feedback from staff and used that to change our program," said Koehler.
One thing that helped change attitudes was that there were no negative experiences; all deaths went very well. "Time and time again I'd hear that the death went beautifully," she said. "We are no longer apprehensive, and we are comfortable with the program."
All aid-in-dying conversations must be initiated by patients, and social workers generally take the lead in this, she explained. "Our doctors can act in the role of consulting doctor, if requested," she said.
Staff can attend deaths, if requested, and there are no parameters or guidelines for that. Some staff members do ask to attend a death after hours, she said, noting that hospice physicians have consulted on 110 cases.
All clinicians are trained to talk about aid in dying. In addition to their consulting role, they can inform other physicians about the law if they are unaware of it. "Our doctors now also actively consult with less experienced prescribing clinicians," said Koehler.
Their hospice runs facilitated debriefings that are optional, but staff are encouraged to attend. She noted that they recently held their first aid-in-dying grief support group and are currently developing a volunteer component to the program.
"As aid in dying becomes more common, it is less impactful or distressing," she said. "Clinicians' feelings and reactions following aid-in-dying deaths are most significantly impacted by the patient and/or family's comfort with, and commitment to, aid in dying."
Gary Pasternak, MD, MPH, chief medical officer, Mission Hospice, San Mateo, California, explained that the experience at his facility was similar to that described by Koehler.
"When we figured out if we wanted to participate in this, we spent many months having brown bag lunches and educational sessions to see if we wanted to opt in," he said.
Mission Hospice is an independent nonprofit organization that has been in operation for 4 decades. It serves patients and families living in San Mateo and Santa Clara Counties. Most of the patients are cared for at home, but Mission Hospice does offer a "hospice house" for those at the very end of life whose symptoms cannot be managed elsewhere.
"For our patients who have decided on this [MAID], we make the process very straightforward with no further hoops to jump through or protocols other than what the state requires," said Pasternak. "There is support along every step of the way."
He confessed that he "got into this without strong convictions and, probably similar to many palliative care physicians, initially thought that maybe it was a failure of good palliative care."
But his first patient helped change his mind. She was a 90-year-old "cantankerous" lawyer who asked for assistance the day the law went into effect in California. "I thought maybe I'd give it a try," he said. "What I discovered was that these were some of the most peaceful deaths I've seen.
"I think ethically, as a physician, I really had to believe in the principle of autonomy, and once I incorporated that into how I view this, it really made it much simpler for me to honor patients' wishes," he added.
Speed Bumps and Changes
The path to integrating aid in dying into hospice care can be more complex if the facility is part of a larger healthcare system.
Such was the case with Evergreen Health Hospice, in Kirkland, Washington, which operates as a not-for-profit facility within a public hospital district. Washington was the second US state to legalize aid in dying. It did so in 2008, and for the past decade, Evergreen's journey in this realm has taken several twists and turns.
Hope Wechkin, MD, medical director of Evergreen Health Hospice, explained that when the law went into effect, the organization had to decide if or how they would opt in. "Our board of directors decided to look at how the people in this hospital district had voted for the initiative," she said. "The public hospital district voted overwhelmingly in support of the law, and we took that as our marching orders."
Currently, the facility cares for about 500 patients in home hospice. It also has 15 in-hospital beds. Previously it was much smaller, and when the aid-in-dying legislation was passed in 2008, it had only one doctor. The concern was that their physician would become the "death-with-dignity doctor," Wechkin said.
"We are one of the largest hospices in western Washington, and we didn't want to become the destination location for aid in dying. So we wrote it into our policy that the hospice doctor would not be a prescribing physician and other Evergreen physicians could serve as consulting physicians," she noted.
After serving for several years of operation with consulting physicians, Wechkin explained that two issues led to another change in their policies.
"One was that we had a few patients who were eligible enough for hospice, but the question was, were they eligible enough for aid in dying?" she said. "The threshold of certainty appears the same, but I think a lot of physicians would agree that the threshold of certainty for hospice benefit is lower than the one required to prescribe a lethal dose of medication."
The issue came up several times, and it created a conflict of interest for the consulting physician, she pointed out.
The second reason was one of simple demand. "Everyone knew that Evergreen was open to this and had empathy, but we have a limited number of physicians, and we had to make some decisions about how we were using our resources," Wechkin continued. "So we have stepped back."
Another problem that had to be addressed early on was whether to allow MAID for patients who were receiving hospice care in hospital. The law permits for clinician nonparticipation, and there was resistance among some of the staff.
"We could not guarantee which staff members would be taking care of a patient, so we did not permit it in the hospital care centers," she explained.
Even with these changes, issues still arise, she continued. Residential status was made more available to patients who want to be in the hospice care center and make it their home. "But last year we were challenged by a patient who said, 'This is my home and I want the option,' " said Wechkin. She said that, again, it comes down to staffing. "There are a minority here who would resign if the inpatient center supported it," she said.
Different challenges arise for a healthcare system that operates in more than one state. Yelena Zatulovsky, LCAT, LPMT, vice president of patient experience, Seasons Healthcare, Rosemont, Illinois, explained that her company operates in 19 states, including Oregon, California, and Colorado, where MAID is legal.
"We were already operating in Oregon when the law was passed in 1997," she said. "As a national agency, we took a neutral position and focused on patient choice, although we didn't permit our medical directors to be either attending or consulting physicians."
Things changed as other states began to legalize the practice, she said.
Zatulovsky explained that a small group of advocates came together and expressed that this was not a fair way to treat patients and their families. "They felt that the patient has made the choice to ingest the medicine and then our staff just walks away," she said. "This was not aligned with our values of offering hope and care to our patients, so we changed our policy before the law was enacted in California."
Physicians are now allowed to participate in both attending and consulting roles if they choose to. "We allow our staff to be present on site, and it doesn't have to be off hours, should they choose to," Zatulovsky said. "As we move forward, we are updating education so that it is state specific."
She added that one thing that they have not done well is supporting the staff who participate in aid in dying. "We were supporting them when we started, but we've fallen behind," she said.
To help remedy that, Zatulovsky says there are plans to run a monthly call for staff and leaders who would like to participate, during which they can talk about their experiences.
National Clinicians Conference on Medical Aid in Dying (NCCMAID): February 14–15, 2020.
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Cite this: Should Medical Aid in Dying Be Part of Hospice Care? - Medscape - Feb 26, 2020.