Realities of End-of-life Issues Confronted
by Robert A. Duke
Healthcare Providers and Public in Landmark Meeting on End-of-Life Issues
“Rumors and Realities” was an apt title for the Jan. 17, 2018, standing-room-only public meeting about dying in Whatcom County.
Community rumors were rife that PeaceHealth’s St. Joseph Medical Center’s Catholic orientation subordinates patient’s end-of-life care directives to its religious ideology. The realities are that civil laws and poor healthcare record access dictate more about end-of-life issues than do any other factors.
A first-time-ever panel representing St. Joseph Medical Center and End-of-Life Washington attempted to address these factors at Moles Community Center in Bellingham for an audience of 120. The results were a mix of successes and failures, but all agreed this unprecedented start was itself the greatest success.
Marie Eaton, director of the Palliative Care Institute at Western Washington University, and Sandy Stork, founder of Bellingham’s branch of the international group Death Café, made this meeting possible. The panel responding to questions consisted of three representing St. Joseph’s: Gurpreet Dhillon, director of Palliative, Cancer and Hospice Care; Jodi Newcomer, nurse manager of Whatcom Hospice; Ross Fewing, director of Mission and Ethics; and Sally McLaughlin represented End of Life Washington.
In their roles with Death Café and Palliative Care, Sandy and Marie have been addressing the same community audience, which has continually voiced concerns over PeaceHealth’s compliance with end-of-life choices, especially involving St. Joseph Medical Center. Whether grounded in facts or not, the pair reached out in late 2017 to PeaceHealth’s Gurpreet Dhillon and Jodi Newcomer to put together the Rumors and Realities event.
Moderator Eaton opened the two-hour meeting by saying its goal was to “. . .unpack what’s possible and what’s not possible,” and then read a prepared question. Each panelist in turn responded to the question, and when Eaton voiced the next question, a man in the audience raised his hand and said the first question hadn’t yet been answered. An approving murmur swept the room.
And so, the meeting went, with audience questions intermixed with more pre-submitted questions. The moderator recognized audience members desiring to comment on various points of the discussion, and others who told fragments of their personal stories. Approximately a dozen questions were asked and answered, about 10 minutes per question.
Sample Audience Questions
Audience: Can patients in local hospice be administered end-of-life drugs?
Panel: No. We don’t want to abandon you, but we’ll help you find a facility that can help. PeaceHealth will not prescribe or administer end-of-life drugs but will discuss options and refer you to facilities that will.
Audience: With Alzheimer’s, are you able to honor end-of-life requests, even if (the patient) can’t speak it?
Panel: There’s no clear answer to that right now. The basic issue is competency to make an informed decision.
Audience: Who advocates for people who are less literate?
Panel: The hospital’s patient advocate.
Audience: How does PeaceHealth handle death by Voluntary Stopping of Eating and Drinking (VSED), and what are the issues of the ethics of care and legal requirements?
Panel: That’s very difficult. If a VSED patient says, ‘I’m thirsty’, even if he’s delirious, the nurse or provider MUST give a drink. The same goes for food.
After about the first 30 minutes, I’d say the audience and panelists had reconciled themselves to what they were both up against – that emergency situations can be dicey — and concluded to make the best of it. Several audience questions could have been answered from published information, and the panelists addressed the impact of legal constraints, complexities of the healthcare system, and the responsibilities of patients, families and caregivers to help make the system work.
Success or Failure
Was the PeaceHealth: Rumors and Realities a success or a failure? Yes!
That the two groups met for two hours was success itself. In particular, moderator Eaton and co-host Stork each has her own success list.
1. I was glad that panelists Ross Fewing and Jodi Newcomer clarified that, although PeaceHealth will not prescribe or administer Death With Dignity (DWD) drugs, it does not have a gag order on its staff. I was particularly interested to learn that, according to Newcomer, hospice presents DWD as an option on its patient intake forms.
2. I also appreciated hearing from panelist Sally McLaughlin (from End-Of-Life Washington) that only four hospitals in Washington allow on-premise participation in DWD, indicating PeaceHealth is not as far out of the mainstream as some might think.
3. Panelists addressed details about the challenges healthcare institutions face and clarified the difficulties facing supporters of VSED.
4. To honor advance directives at PeaceHealth, there is a “tab” now in your medical chart indicating where your advance directive and/or POLST documents are located, but there remain identified challenges for healthcare providers to actually obtain them.
1. There was affirmation that people want opportunities to ask the questions directly and address the issues they have about the policies of patient care at PeaceHealth facilities.
2. Besides the turnout for the event, I thought the degree of audience engagement was great.
3. Many of the questions I had hoped would be asked were asked (not that there couldn’t have been more questions.).
4. The discussion stimulated meaningful conversations among the panelists about “where do we go from here.”
Catholic Hospitals vs. Hospitals
The question of Catholic religious bias affecting end-of-life care at St. Joseph’s remains unanswered, because it was never explicitly addressed. I think the “Catholic” question is a relic from the Reformation. Much of the history of hospitals is the history of religion – all religions.
I thought the internet’s Huffington Post article titled ‘Catholic’ Hospitals vs. Hospitals, by Dr. Andrew Agwunobi of Cambodia said it best: “I also happen to be Catholic, which I hasten to clarify is about as important to this topic as being Cambodian.”
The earliest hospitals were Egyptian temples dedicated to various gods and deities where the sick went seeking relief. This system of religion = care for the sick progressed through Greek and Roman civilizations and into Europe, and is a staple concept of Christianity and other world religions.
Here’s a representative list of U.S. hospitals with religious affiliations:
Catholic Hospitals include St. Francis, John’s, Joseph’s, Luke’s, Mary’s, Thomas’, Theodore’s, and Vincent’s. There’s also New York Presbyterian Hospital, Barnes—Jewish Hospital, Wake Forest Baptist Medical Center, and Lutheran, Methodist and Adventist Hospitals.
There also may be good reason for seeking a religion-based hospital. An Aug. 17, 2017, Huffington Post article titled Religious Hospitals Better? Study Says Catholic and Church-Run Hospitals More Efficient, Provide Superior Care by Daniel Burke, who wrote, “If you are looking to justify your preference for a Catholic hospital, here’s your excuse.”
Historically, Catholic hospitals followed Catholic dictates largely because they were staffed by Catholic nuns until 1960. In the 1960s, the population of nuns nosedived, forcing Catholic hospitals to become more secular. It therefore seems safe to put aside the Catholic conspiracy theory and look for more likely causes to the problem of getting advance directives recognized and acted upon.
The cause of the perceived problem with honoring patient end-of-life directives at St. Joseph Medical Center may have been pinpointed by panelist Gurpreet Dhillon’s opening remarks to the audience, when he asked, “How many of you have an advanced care directive?”
Most hands went up, and he said, “We’re working on how to make more reliability, so this information can get to the right person when you get (to the hospital). We’re working on the culture to get that done.” (Emphasis added.)
In response came the shouted question, “Can I be guaranteed?” to which Dhillon responded, “I can’t guarantee it. We’re working on making it more reliable.”
The problem, it seems, is not Catholicism but the issue of disorganized and mismanaged corporate healthcare manifested by the lack of compatible, accessible and fully implemented “electronic healthcare records” (EHR). The last published WA State Health Department count of Whatcom EHRs was 30, most of which cannot communicate with each other. By contrast, the state of Oregon has mandated that only one EHR be in effect.
No other reliable destination that is universally accessible to every healthcare provider attending you at the end of your life is available in 2018. (For an in-depth look at EHR in Whatcom County see the Whatcom Watch October/November 2014 issue of my column Whatcom: Chronic & Acute article Patient Portal: A Magic Gateway to Healthcare Reform.)
I came away from the Rumors and Realities event with the astonishing realization that the public was by the show of hands further ahead in adopting end-of-life directives than is the healthcare system as represented by PeaceHealth and St. Joseph Medical Center.
I confess to attending the event and anticipating failure.
The panel mostly provided anecdotal information laced with complaints about the complexity of end-of-life matters and underscored by frequent apologies. Their message was often that providers were doing their best, and responsibility for end-of-life decisions and care rested with family, spouses and friends of the patient. There was little specific talk about the roles of clinicians or hospital administrators in end-of-life.
I had witnessed the whole St. Joseph Medical Center end-of-life process with the death of my wife from brain cancer in 2011. We had all of our paper work in order, and I witnessed advance directive medical decisions being made. Doctors must make such decisions, at any time of the day or night, regardless of whom else might be present. Time and tide, the adage says, wait for no man, but neither does death.
From knowledge I acquired as a member of the PeaceHealth Patient Advisory Board, the most likely person to be in charge of a patient at any time in the hospital is a physician designated as the “hospitalist.” My question to the panel was to name the medical person most likely to be making advance directive end-of-life decisions for St. Joseph patients? Initially there was no answer given, but late in the event, a physician responsible for end-of-life decisions had been publicly identified. For this, I had a personal reason to consider Rumors and Realities a success.
Hope and Trust
From my experience as my wife’s sole caregiver for the 18 months she lived coupled with my ongoing experience as a patient, I learned how much patients and caregivers subsist on hope and trust: hope for treatment and perhaps a cure, and trust that it will be provided.
It’s not about success or failure, it’s about ongoing hope and trust. I believe the Jan. 17, 2018 PeaceHealth: Rumors and Realities meeting was a success by initiating dialogue about end-of-life concerns that gave the standing-room-only crowd some hope the hospital is aware of and will work to address these issues widespread in our community.
Robert A. Duke is author of “Waking Up Dying: Caregiving When There Is No Tomorrow,” he lives in Bellingham. His email: email@example.com