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Death: Have It Your Way


September 2014

Whatcom: Chronic & Acute

Death: Have It Your Way

by Robert A. Duke

Robert A. Duke is author of “Waking Up Dying: Caregiving When There Is No Tomorrow,” he lives in Bellingham. His email: boshduke@gmail.com

Conspicuous billboards would appear around Whatcom County reading, “DEATH: HAVE IT YOUR WAY,”* in the future of healthcare as visualized by July 2014’s Palliative Care Conference in Bellingham. That suggestion was greeted with applause as the three-day conference concluded for the approximately 80 healthcare reformers, providers and citizen-activists in attendance.

The meeting was convened to continue the community discussion of the role of palliative care in local healthcare reform and as a workshop for the exchange of ideas between citizens and healthcare professionals.

Implementing palliative care in Whatcom County is a healthcare reform initiative aimed at moving palliative care out of hospice and ultimately into the general outpatient population where it can be more effective. The first step in executing this initiative in Whatcom County was to bring Dr. Bree Johnston to PeaceHealth’s St. Joseph Hospital in October 2011.

Asked whether her arrival marked the beginning of palliative care at St. Joseph, Johnston said, “No, I think it started long before I came. So first of all I think all providers do engage in palliative care even if not engaged in specialty palliative care, so there was a lot of good work happening with lots of people.”

“But in terms of specialty palliative care,” she continued, “they had Dr. Meg Jacobson, Medical Director of Whatcom Hospice, and others trying their best to care for hospice patients but to also provide some inpatient palliative care at the hospital. It was hard to just be adding it onto what they were already doing, so they didn’t have the comprehensive service, but they were certainly trying their best. “

Today, nearly three years since Johnston’s arrival, the palliative care initiative is a viable partnership with Western Washington University (WWU), Whatcom Alliance for Health Advancement (WAHA), Community Organized Group for Health (COGH), Whatcom Family & Community Network, PeaceHealth Palliative Care, and PeaceHealth Hospice to transform palliative care in the Whatcom community and to support the human responses to living and dying. The initiative has been designed to create a “palliative community” by providing a place where people with serious illnesses don’t have to be cured to heal.

Many characteristics of Whatcom County have made healthcare reformers optimistic about healthcare reform here: a willing population, a single hospital, a single large-scale provider, a viable independent clinic and broad community support. The consensus is that if reform can be done anywhere, it can be done here. Whatcom providers, reformers and citizens seem to agree, though they acknowledge that even given this ideal venue, healthcare reform is difficult and glacial. Many point to the advances made in palliative care as an example of success and progress in healthcare reform. Although no one I’ve met is highly satisfied, some are at least optimistic.

Wisely, I would judge, Whatcom reformers are relying on models of reform that have succeeded elsewhere, such as La Crosse, WI’s Respecting Choices advance care planning, which provides a healthcare directive for end-of-life medical decisions. Closer to home, Oregon’s Life Passages model has been selected as the palliative care program to be emulated in Whatcom County.

Laura Matthews, RN, a founder of Life Passages, spoke at the Bellingham conference. She recapped the history and accomplishments of Life Passages. Matthews said that Life Passages, too, had modeled its program from other existing palliative care and hospice programs. Phase One began in 2012, with social workers and volunteers, after receiving a generous grant. Phases Two and Three followed with nursing and physician consultations that became available in the fall of 2013.

“Today we provide case management, help with symptom management, resource identification, advanced care planning, and non-urgent functional and practical support including respite for caregivers, and help with emotional and spiritual issues if requested,” Matthews said.

Life Passages faced the same issues and limitations confronting Bree Johnston’s efforts at PeaceHealth, Matthews pointed out. “While palliative care works from the same principles and provides many of the same benefits that hospice does, (separately) it is not yet a reimbursable program under Medicare,” she said.

Asked about her next milestone for Bellingham’s palliative care program, Dr. Johnston echoed Matthews.

“In a year? I would love to do it in the next year; however, under the pay-for-service medical system, outpatient palliative care is not a financially viable model, ” Johnston said. “So, we either need a friend to fund us or [we must] transition to what is called an accountable-care model or a population-based model. Under fee for service, where you get paid for what you do, palliative care doesn’t make financial sense.”

Throughout my interview with Dr. Johnston, as with nearly everything to do with healthcare, the conversation devolved into the issue of money: “It is all about money, accounting and capacity, too,” Johnston said. “Either more charity or financial reforms are needed to achieve further care reforms.”

It was thanks to the RiverStyx Foundation, which was the underwriter for the conference, that palliative care in Whatcom County has gotten as far as it has.

About the conference, Steve Brinn, a member of the RiverStyx board of directors, said, “The robust attendance and diversity of parties at this first Palliative Care Conference is a good indicator of a strong emerging network of people and institutions dedicated to improved support in this community for the “good death”. Big changes, both in how individuals exercise choice regarding end of life care and how the healthcare systems constrain spending that is way outside international norms, will, at best, be very slow coming. But we believe Whatcom County can become an indicator community.”

Its website, www.riverstyxfoundation.org, defines the foundation’s overall mission and interest in end-of-life issues:

The lack of acceptance and fear around death and dying has resulted in massive expenditures of often frivolous and artificial attempts to minimally prolong life at the end. For instance, more than half of Medicare dollars are spent on patients who die within two months, costing society (billions) annually, often adding stress to families and actually reducing the quality of life for many patients. This culture of “death denial” has also prevented society from empowering mentally sound individuals with terminal prognoses to be able to take greater control over their pain and timing of their death. The RiverStyx Foundation aims to support a more balanced approach that encourages avenues to reduce suffering through hospice and palliative care, providing people the opportunity to die with less suffering, and with greater dignity and peace.

Another of the foundation’s approaches to addressing end-of-life issues was its role in establishing Whatcom Hospice, operated by PeaceHealth, in the Happy Valley neighborhood of Bellingham. It opened in 2010.

To enhance the movement towards end-of-life preparation, palliative care and hospice, the Affordable Care Act (ACA) of 2010 was to have included a provision to pay physicians to counsel patients on end-of-life preparations. Unfortunately, during the 2009 debate on ACA, former Alaska Gov. Sarah Palin coined the term, “death panels,” to describe the proposed counseling, which resulted in end-of-life counseling being stricken from final ACA legislation. Though exposed as an outrageous politically motivated lie, Palin’s denouncement left counseling about living wills, healthcare directives and end-of-life care options unfunded and left reform efforts such as palliative care and hospice struggling on the fringe of established healthcare. Now, nearly five years later, her remarks still clearly in mind, some conference attendees blamed Palin for the lack of palliative care and hospice-related funding that hobbles end-of-life options education in Whatcom County.

Despite Palin’s best efforts, she dealt little more than a pin prick to the issue locally or elsewhere in the U.S. The real problem for advancing palliative care rests in the healthcare system itself — entrenched resistance to change. Islands of reformed healthcare have materialized, but they exist in a boundless, unreformed ocean of indifferent and dysfunctional care and treatment.

In 2002, Whatcom Alliance for Health Advancement (WAHA) was formed in Whatcom County with five simple community and patient goals:

• Connect people to healthcare

• Facilitate transformation of the current system

• Improve health

• Reduce costs

• Improve the experience of care

And yet, in 2013, when I compared my experience with Whatcom healthcare, during my wife’s 2009-2011 battle with cancer, I found most of WAHA’s goals unfulfilled. And it wasn’t for lack of trying because the effort to reform had been persistent, but the resistance had been substantial.

The glacier analogy again comes to mind. While the “glacier of reform” may be an irresistible force that can level inertial mountains, it works very slowly. At times reform and progress develop so slowly that “ice ages” rather than years or decades come to mind.

Patients and caregivers, however, just don’t have that kind of time.

Yes, reform has brought palliative care out of hospice and into the hospital in the past three years, but real reform still has a long way to go.

“For palliative care to really have an impact, palliative care needs to move upstream to the outpatient side,” Dr. Johnston points out. “Often, by the time we see patients now, they are so sick that they are ready for hospice already, and many times we could have helped them months or years before. I really think it (palliative care) needs to happen outside the hospital, but again we will have to find a financial model to make that work, a combination of hospital philanthropy partnerships and insurance.

“Insurers love the palliative care model and there are increasing examples of insurers partnering with palliative care providers,” she continued. “It is attractive to them because it demonstrates that palliative care reduces hospital costs and really reduces the risk of patients dying in a hospital.”

So what brought Dr. Johnston to Bellingham if it wasn’t a bed of roses for palliative care?

Dr. Johnston, a graduate of the University of California, San Francisco, (UCSF) School of Medicine, came to Whatcom County from UCSF where she was Professor of Medicine. Johnston, 58, is the Director of Palliative Care for the PeaceHealth St. Joseph Medical Center and PeaceHealth Medical System.

“There were two major things that brought me here,” she said. “What attracted me was the Bellingham community, because it seemed like a very special community, and it looked like someplace where palliative care could thrive. I was absolutely blown away by the community’s enthusiasm. Absolutely.”

“Healing without curing” is the succinct definition of palliative care adopted by local supporters. Not everyone or every condition is curable, but suffering can be treated and relieved if palliative care is made available by the healthcare system. In a nutshell that is what the initiative is about. Dr. Johnston’s goal is to make palliative care routinely available to outpatients throughout the PeaceHealth system.

Presently, palliative care is restricted to inpatient consultations for those admitted to the hospital. “Palliative care does close to 500 consults annually,” Johnston said with pride, “with myself, a half-time social worker, a full time RN, and a half-time administrator, half-time chaplain, part-time senior health physician, and soon we will have another half-time doctor.”

A 2009 national survey of cancer centers showed that 23 percent had beds dedicated to inpatient palliative care. By comparison, my wife, Shearlean Duke, diagnosed with terminal brain cancer in 2009, had access to inpatient palliative care for only the eight days she was hospitalized of the 531 days of her treatment. For the 523 days that she was an outpatient we had to battle for care and treatment that would provide the palliative care she wanted.

In 2009, palliative care was not available at PeaceHealth’s St. Joseph hospital, even as an inpatient, unless the attending physician requested it. It was available in PeaceHealth Hospice in 2009, but Shearlean’s condition didn’t warrant admittance to hospice, and so she had to find or create palliative care wherever she could.

Her cancer was incurable, but her symptoms could have been healed to provide her with a higher quality of remaining life, the very definition of palliative care. Shearlean was admitted to home hospice 15 hours before her death. In this short time, hospice was able to provide critical care including coming to our home at 6 a.m. to confirm her death and assist in her removal.

When I talked about this at a recent 2014 meeting, one attendee challenged me by asking, “How did you even know what palliative care was in 2009?” I could only answer that my wife, a journalist, and I read a lot and were generally well-informed individuals. Not satisfied, the challenger, a long-time healthcare professional, remarked, “I don’t think 1-in-300 people knew what palliative care was in 2009.” He was probably right, but we knew and were determined to have it.

More broadly, palliative care provides:

• Relief from distressing symptoms;

• Affirms life and regards dying as normal;

• Intends to neither hasten nor postpone death;

• Integrates psychological and spiritual aspects of patient care;

• Helps patients live as actively as possible;

• Supports family and other caregivers;

• Uses a team approach to patient and family needs;

• Strives to enhance quality of life;

• Offers other life-prolonging therapies if applied early in illness.

Palliative care originated in the 19th-century European hospice movement. It remained part of hospice in Whatcom County until it had become obvious in 2011 that palliative care was required long before patients qualified for hospice. The reason? Terminal patients were living longer than established hospice could accommodate. Also, attempts to provide palliative care piecemeal and on demand to inpatients at St. Joseph had proved unsatisfactory and inadequate.

Shearlean chose palliative care the day she was diagnosed, because she elected to have the highest quality of remaining life that she could obtain.

While proposed palliative care will not provide the sort of advocacy and care management I have personally hoped for (that burden will still fall to the caregiver), I am convinced that if palliative care can reach outpatients, the healthcare system will be adequately reformed to sufficiently reduce and ease the caregiver’s burden. Improvement anywhere in the healthcare system is an improvement in caregiving.

Bringing palliative care into St. Joseph Hospital with the arrival of Dr. Johnston brought it closer to patients and providers for continuity and convenience of treatment, and a step closer to integrating it into routine care. This also relieved the strain on hospice of trying to provide part-time palliative care from the cross-town distance of the hospice house.

At the conclusion of our interview, I asked Dr. Johnston what would you like to promise patients in the way of palliative care benefits?

“I would like to promise I would listen to them and try to make their care more patient centered,” she said. “The goal is to slow down the current system of hurried treatment.

“I would work at unlearning the medical school model of working for the hospital or healthcare system instead of the patient. Also, I would try to be as honest with patients about prognosis as the patient wants us to be,” she continued. “Knowing your prognosis can be very empowering. Patients that know they have one year, not two, might spend their time a lot differently than if they thought they had 10 years.”

It is clear listening to Dr. Johnston and all the other palliative care proponents and providers that they want to do for patients what patients want done. In fact, palliative care is ready to change, if not revolutionize, our dysfunctional healthcare system to make it more patient-centered.

Ironically, this raises an even more perplexing and difficult question: Will patients be willing and prepared to tell Dr. Johnston and her colleagues what care and treatment they want?

While everyone knows that death is not optional, less than 23 percent of Whatcom’s population has made any end-of-life preparations, according to WAHA’s advance care planning sources. Even those now obviously near the end of their life have made no preparations, have not discussed end-of-life issues with family or others, or documented their healthcare demands, as many of my elderly acquaintances have confessed.

Those future local patients to whom Dr. Johnston is directing her promises, who have made no end-of-life preparations, will have nothing to say to her because they have no healthcare directive, no medical power of attorney and no Physicians Order for Life Sustaining Treatment (POLST) form.

So when patients question why the healthcare system is the way it is, they know where to turn for an answer: the nearest mirror.

Acronyms

ACA: Affordable Care Act

COGH: Community Organized Group for Health

POLST: Physician’s Order for Life Sustaining Treatment

UCSF: University of California San Francisco

WAHA: Whatcom Alliance for Health Advancement

WWU: Western Washington University


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