02/19/18

We Need to Revolutionize End-of-Life Care — Here’s Why

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Because it’s time to start thinking about death differently.

By Laura Dorwart

When Victoria Chang’s mother was diagnosed with pulmonary fibrosis, she didn’t have a single person she felt she could turn to. Six years earlier, her father had a stroke that led to significant neurological changes, and now the young poet realized she alone would have to care for them both. None of her friends had sick or elderly parents, so she felt completely isolated.

What followed was a decade of navigating America’s imperfect end-of-life health care system, without much guidance from the doctors and specialists she so frequently encountered. When asked what she would have done differently over the course of the stressful years, Chang says, frankly, “Everything.”

“Everything was a learning curve, everything new,” she says, noting how she wished there had been more help for people like her. “Emotions were high, and we needed a case manager or a consultant or something. Hospice seemed to help, but in the end, there was only so much they could do.”

Chang’s experience caring for seriously ill loved ones is sadly not unique. Thanks to a combination of denial, a lack of know-how and flawed systems, most Americans don’t have the support they need when it comes to end-of-life care. According to a study by the California HealthCare Foundation:

Furthermore, a majority of those surveyed had not even communicated their end-of-life wishes to the loved one they would want making decisions on their behalf. That’s where Dr. Ira Byock, chief medical officer of the Institute for Human Caring at Providence St. Joseph Health, comes in. A renowned expert in palliative care and the author of The Four Things That Matter Most: A Book About Living and The Best Care Possible, Byock wants to reimagine health care as a more personal, approachable system. He wants to boost the person-to-person communication and eradicate denial — an approach he and his colleagues call Whole Person Care.

Dr. Byock

“[Whole Person Care] attends not just to your medical problems, but to your personal priorities, values and preferences,” explains Byock. “You’re someone with bodily needs but also have emotional, relational, social and spiritual parts of your life, all of which need to be attended to.”

This perspective may not seem all that radical, but it is clearly not the current practice. American medicine is good in that it’s a “problem-based system,” Byock says. “It is organized around your problem list on your chart. Everything we do, by design, responds to a problem on your list.” But life isn’t just a set of problems to be solved; patients have lives that extend well beyond the walls of hospitals and waiting rooms. Health care, in Byock’s opinion, should address this reality at all stages of life.

Perhaps most importantly, Whole Person Care includes patients’ families at every level of care. Byock emphasizes the significance of the familial role in a patient’s comfort, as well as the ripple effects of a single individual’s illness on loved ones and their network of relationships. “Whenever one person gets a serious diagnosis, everyone who loves that person shares in the illness. It’s a family and community issue.”

Chang, for one, can attest to the need for a system like Whole Person Care. “Looking back, I can’t remember the past decade because I was so busy helping everyone around me,” she says.

When asked what advice she would give to those caring for a family member or spouse dealing with a serious illness, Chang emphasizes the importance of self-care and finding community support in whatever form that might take. Remember that “it is OK to think about yourself and to take care of yourself,” she says. “Seek out groups to share with and to get emotional support. I only did this toward the end when I started reading about and writing to people on the pulmonary fibrosis foundation website. Those forums saved my life.” She also encourages folks in similar positions to consider their options, including daycare, homecare and facilities, and weigh the pros and cons of each.

Byock also encourages those faced with these situations to manage their own health: “People can experience wellbeing even in the midst of serious illness.”

Complete Article HERE!

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02/9/18

Sitting With Silence in End-of-Life Cancer Care

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Sometimes compassionate silence can be more effective than action when caring for a terminally ill person.

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The capacity to bear witness and respond empathically to a dying person’s suffering is inherent in end-of-life care. Holistic, relationship-centered, compassionate care is the hallmark of palliative end-of-life care.1 Yet, simultaneously, researchers have found medical training sometimes ill-equipped in preparing clinicians for the range of concerns and emotions expressed by dying patients and their families. Healthcare professionals report lacking skills in psychosocial and spiritual care of dying people, resulting in high levels of moral distress, grief, and burnout.1 Similarly, Tornoe and colleagues found “western society’s fast-paced healthcare environment conditions us to view death as a physiological event and a failure rather than a natural part of the human lifecycle and a second passage of a life.”

Modern medicine with its emphasis on cure frequently discovers itself struggling with an array of challenges in end-of-life care. Studies on the influence of compassionate silence in end-of-life care have indicated that clinicians’ focus solely on “doing” may actually be inappropriate at times and inhibit their ability to effectively address and meet the needs of the person who is terminally ill. A prominent theme was that the “do, fix, and hopefully cure” mandate in modern medicine may not be appropriate at the end of life and, in fact, may need to be balanced with the quality of being present with those who are suffering.1 Being “present” to patients who are nearing death therefore entails that clinicians possess a certain comfort level in terms of “sitting with the silence” and offering the “gift of presence.”

The Landscape of Silences

The research of Back and colleagues outlined 3 types of silences that can manifest between patients and clinicians in the clinical encounter: awkward, invitational, and compassionate. In regard to awkward silences, they write, “silence most often feels like it is dragging on too long when a well-meaning clinician thinks he should be ‘using silence.’ While we recognize that new skills have a learning curve before they can be performed smoothly, we also think that the problem with a directive to stop doing something is unlikely to produce the quality of silence that is actually therapeutic.”

Invitational silences are often intentional and used to evoke certain thoughts or feelings from the patient in an attempt to engender further dialogue and reflection. “The clinician deliberately creates a silence meant to convey empathy, allow a patient time to think or feel, or to invite the patient into the conversation in some way. While we recognize that these silences are tremendously valuable, we also note that these silences are often described as a kind of holding, which has a stage-setting, expectant quality,” explained Back. Invitational silence mentored by mindfulness can be effective in heightening patients’ awareness of the moment and help them observe their feelings and thoughts in noncritical or nonjudgmental ways. Conversely, mindfulness and the clinician’s ability to “quiet the mind” may also help to free one from distractions that might preclude attentiveness to the present moment. The clinician has to shift his or her thought from a narrative mode to one a patient perceives as more empathic or compassionate.

Although minor attention has been given to compassionate silences, researchers recently have taken note and underscored its significance in end-of-life care. Rooted in contemplative practices, compassionate silences encompass a way of being in the world and with the dying that cannot be contrived nor forced by clinicians. “Compassion in contemplative traditions is transmitted through a quality of mind … and is not a tool to be used with a specific set of indications and meanings,” Back explains. In another study conducted with hospice nurses and pertinent to the practice of consoling presence, Tornoe and colleagues found that embracing the silence demanded a mental shift from a focus on doing something for the patient to being with the patient. Compassionate silences, therefore, should never be understood as a means or device in which to create therapeutic relationships. The clinician’s ability to empathize and “join with” the suffering of the dying fosters rapport. Being present in the moment elicits openness in allowing our humanity to speak. Compassion for the other emerges naturally and freely from within. The ability to abide compassionately, amidst silence in end-of-life care and simply be provides depth and soul to the patient-clinician encounter. Clinicians who developed the ability to maintain stable attention and emotional balance, and are naturally comfortable expressing empathy and compassion can spontaneously achieve compassionate silences.

Conclusion

Mindfulness meditation, contemplative practices, and centering prayer are proven to help clinicians cultivate empathy and develop “consoling presence.” Although further research is needed, studies have clearly demonstrated the positive influence of these techniques in promoting a way of being and quality of mind that is crucial to end-of-life care. Whether meditative practices enhance empathic behavior is not known; however, evidence suggests that meditation has a positive effect on factors known to influence empathic mental processes.

Complete Article HERE!

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02/8/18

Too many patients ‘die badly’ — 5 things to know

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by Megan Knowles 

When states accept medical aid-in-dying practices, physicians risk becoming complicit in covering up the failures of their profession — particularly allowing patients to die badly, Ira Byock, MD, palliative care physician and CMO of Torrance, Calif.-based Providence St. Joseph Health’s Institute for Human Caring, argues in a STAT op-ed.

“Americans are rightly outraged by the mistreatment their dying loved ones commonly receive,” Dr. Byock wrote. “People deserve state-of-art treatments for their maladies as well as expert attention to their comfort and inherent dignity all the way through to the end of life. Both are necessary; neither alone will suffice.”

Here are 5 things to know about the article.

1. Although physicians do not want their patients to die, they must realize there comes a point when more medical treatments do not mean better care for patients. Additionally, patients’ family members and care givers must recognize their complicity in overtreating their loved ones.

2. In addition to causing patients unnecessary suffering during end-of-life-care, overtreating patients contributes to increased rates of moral distress, burnout, depression, addiction and suicide in physicians, Dr. Byock wrote.

3. Dying badly in the U.S. is most evident in university-based referral centers. Only 23 percent of incurably ill patients at UCLA’s cancer center were referred to hospice care before they died despite the American Society of Clinical Oncology’s recommendation for hospice care as a best practice, according to a study published in the Journal of Oncology Practice.

4. A separate study found UCLA patients with cancer regularly received excessive radiation treatments to tumors that had spread to their bones. Out of 54 patients who met criteria for single-dose treatment under appropriate clinical guidelines, only one patient was given the recommended one dose of radiation. Forty-two patients were prescribed 10 or more doses, which indicates a taxing treatment regimen.

5. To help keep patients from dying badly, medical leaders can draft public policies to fix longstanding flaws in clinical training, monitor members’ practices for indicators of quality end-of-life care, persuade hospitals to launch strong palliative care programs and work to implement regulatory reform to increase the minimum number of staff members in nursing homes while revoking the licenses of facilities that continually fail to meet residents’ basic needs, Dr. Byock wrote.

Complete Article HERE!

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01/11/18

How does assisting with suicide affect physicians?

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When my mother was in her final months, suffering from a heart failure and other problems, she called me to her bedside with a pained expression. She took my hand and asked plaintively, “How do I get out of this mess?”

As a physician, I dreaded the question that might follow: Would I help her end her life by prescribing a lethal drug?

Fortunately for me, my mother tolerated her final weeks at home, with the help of hospice nurses and occasional palliative medication. She never raised the thorny question of what is variously termed “medical aid in dying” or “physician-assisted suicide.”

As a son and family member who has witnessed the difficult final days of parents and loved ones, I can understand why support for MAID/PAS is growing among the general public. But as a physician and medical ethicist, I believe that MAID/PAS flies in the face of a 2,000-year imperative of Hippocratic medicine: “Do no harm to the patient.”

Studies point out that even many doctors who actually participate in MAID/PAS remain uneasy or “conflicted” about it. In this piece, I explore their ambivalence.

Assisted suicides

In discussing end-of-life issues, both the general public and physicians themselves need to distinguish three different approaches.

MAID/PAS involves a physician’s providing the patient with a prescription of a lethal drug that the patient could take anytime to end life. In contrast, active euthanasia or “mercy killing” involves causing the death of a person, typically through a lethal injection given by a physician. Finally, the term “passive euthanasia” refers to hastening the death of a terminally ill person by removing some vital form of support. An example would be disconnecting a respirator.

Increasing international acceptance

In the U.S. some form of legislatively approved MAID/PAS (but not active euthanasia) is legal in five states and the District of Columbia. In my home state – following a passionate debate – the Massachusetts Medical Society recently decided to rescind its long-held opposition to the practice. MMS has taken a position of “neutral engagement,” which it claims will allow it to “serve as a medical and scientific resource … that will support shared decision making between terminally ill patients and their trusted physicians.”

Physician-assisted suicide is finding more acceptance.

In a few countries, MAID/PAS has grown increasingly common. In Canada, for example, MAID/PAS was legalized in 2016. In Belgium and the Netherlands, both active euthanasia and physician-assisted suicide are permitted by law, even for patients whose illnesses may be treatable, as with major depression; and whose informed consent may be compromised, as in Alzheimer’s disease. In the Netherlands, a proposed “Completed Life Bill” would allow any persons age 75 or over who decide their life is “complete” to be euthanized – even if the person is otherwise healthy.

U.S. physician response

Among U.S. physicians, MAID/PAS remains controversial, but national data point to its increasing acceptance. A report published in December 2016 found 57 percent of doctors agreed that physician-assisted death should be available to the terminally ill – up from 54 percent in 2014 and 46 percent in 2010.

Perhaps this trend is not surprising. After all, what sort of physician would want to deny dying patients the option of ending their suffering and avoiding an agonizing, painful death?

But this question is misleading. Most persons requesting PAS are not actively experiencing extreme suffering or inadequate pain control. Data from the Washington and Oregon PAS programs show that most patients choose PAS because they fear loss of dignity and control over their own lives.

Some physicians feel conflicted

Physicians who carry out assisted suicide have a wide variety of emotional and psychological responses. In a structured, in-depth telephone interview survey of 38 U.S. oncologists who reported participating in euthanasia or PAS, more than half of the physicians received “comfort” from having carried out euthanasia or PAS.

“Comfort” was not explicitly defined, but, for example, these physicians felt that they had helped patients end their lives in the way the patients wished. However, nearly a quarter of the physicians regretted their actions. Another 16 percent reported that the emotional burden of performing euthanasia or PAS adversely affected their medical practice.

For example, one physician felt so “burned out” that he moved from the city in which he was practicing to a small town.

Other data support the observation that MAID/PAS can be emotionally disturbing to the physician.

Kenneth R. Stevens Jr., an emeritus professor at Oregon Health and Science University, reported that for some physicians in Oregon, participation in PAS was very stressful. For example, in 1998, the first year of Oregon’s “Death with Dignity Act,” 14 physicians wrote prescriptions for lethal medications for the 15 patients who died from physician-assisted suicide.

The state’s annual 1998 report observed that:

“For some of these physicians, the process of participating in physician-assisted suicide exacted a large emotional toll, as reflected by such comments as, ‘It was an excruciating thing to do … it made me rethink life’s priorities,’ ‘This was really hard on me, especially being there when he took the pills,’ and ‘This had a tremendous emotional impact.’”

Similarly, reactions among European doctors suggest that PAS and euthanasia often provoke strong negative feelings.

Why the discomfort?

Feeling conflicted.

As a physician and medical ethicist, I am opposed to any form of physician assistance with a patient’s suicide. Furthermore, I believe that the term “medical aid in dying” allows physicians to avoid the harsh truth that they are helping patients kill themselves. This is also the view of the very influential American College of Physicians.

I believe that the ambivalence and discomfort experienced by a substantial percentage of PAS-participating physicians is directly connected to the Hippocratic Oath – arguably, the most important foundational document in medical ethics. The Oath clearly states:

“I will neither give a deadly drug to anybody if asked for it, nor will I make a suggestion to this effect.”

In 5th century BC Greece, Hippocrates was something of a revolutionary in this respect. As the classicist and medical historian, Ludwig Edelstein has pointed out some non-Hippocratic physicians probably did provide poisons to their dying patients, in order to spare them protracted suffering. Hippocrates opposed this practice, though he did not believe that terminally ill patients should be exposed to unnecessary and futile medical treatment.

Palliative care specialist Ira Byock has observed that:

“From its very inception, the profession of medicine has formally prohibited its members from using their special knowledge to cause death or harm to others. This was – and is – a necessary protection so that the power of medicine is not used against vulnerable people.”

Indeed, when patients nearing the end of life express fears of losing control, or being deprived of dignity, compassionate and supportive counseling is called for – not assistance in committing suicide.

To be sure, comprehensive palliative care, including home hospice nursing, should be provided to the subset of terminally ill patients who require pain relief. But as physician and ethicist Leon Kass has put it:

“We must care for the dying, not make them dead.”

Complete Article HERE!

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01/9/18

This Was Not the Good Death We Were Promised

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When my father was dying of pancreatic cancer last summer, I often curled up with him in the adjustable hospital bed set up in his bedroom. As we watched episodes of “The Great British Baking Show,” I’d think about all the things I couldn’t promise him.

I couldn’t promise that the book he’d been working on would ever be published. I couldn’t promise he would get to see his childhood friends from England one more time. I couldn’t even promise he’d find out who won the baking show that season.

But what I could promise — or I thought I could — was that he would not be in pain at the end of his life.

That’s because after hearing for years about the unnecessary medicalization of most hospital deaths, I had called an in-home hospice agency to usher him “off this mortal coil,” as my literary father still liked to say at 83.

When a doctor said my father had about six months to live, I invited a hospice representative to my parents’ kitchen table. She went over their Medicare-funded services, including weekly check-ins from a nurse and 24/7 emergency oversight by a doctor. Most comfortingly, she told us if a final “crisis” came, such as severe pain or agitation, a registered nurse would stay in his room around the clock to treat him.

For several months, things went well. His primary nurse, who doubled as case worker, was kind and empathetic. A caretaker came three mornings a week to wash him and make breakfast. A physician assistant prescribed drugs for pain and constipation. His pain was not terrible, so a low dose of oxycodone — the only painkiller they gave us — seemed to suffice.

In those last precious weeks at home, we had tender conversations, looked over photographs from his childhood, talked about his grandchildren’s future.

But at the very end, confronted by a sudden deterioration in my father’s condition, hospice did not fulfill its promise to my family — not for lack of good intentions but for lack of staff and foresight.

At 7 p.m. on the night before my father’s last day of life, his abdominal pain spiked. Since his nurse turned off her phone at 5, I called the hospice switchboard. To my surprise, no doctor was available, and it took the receptionist an hour to reach a nurse by phone. She told us we should double his dose of oxycodone, but that made no difference. We needed a house call.

The only on-call nurse was helping another family two hours away. So my sister and I experimented with Ativan and more oxycodone, then fumbled through administering a dose of morphine that my mother found in a cabinet, left over from a past hospital visit. That was lucky, because when the nurse arrived at midnight, she brought no painkillers.

After the nurse left, my father’s pain broke through the morphine. I called the switchboard again, and it took three hours for a new nurse to come. She was surprised he hadn’t been set up with a pump for a more effective painkiller. She agreed that this constituted a crisis and should trigger the promised round-the-clock care. She made a phone call and told us the crisis nurse would arrive by 8 a.m.

The nurse did not come at 8 a.m. Or 9 a.m. When his case worker was back on duty, she told us — apologetically — that the nurse on that shift had come down with strep throat. Her supervisor stopped by, showed us the proper way to deliver morphine (we’d been doing it wrong) and told us a pain pump and a crisis nurse should arrive by noon.

Noon passed, then 1 p.m., 2 p.m. No nurse, no pump.

By this time, my father had slipped into a coma without our noticing; we were thankful his pain was over but heartbroken he wouldn’t hear our goodbyes. Finally, at 4 p.m., the nurse arrived — a kind, energetic woman from Poland. But there was little left to do. My father died an hour later.

At the end of life, things can fall apart quickly, and neither medical specialist nor hospice worker can guarantee a painless exit. But we were told a palliative expert would be at my father’s bedside if he needed it. We were not told this was conditional on staffing levels.

I didn’t realize how common our experience was until a few months after his death, when two reports on home hospice came out — one from Politico and one from Kaiser Health News. According to their investigations, the hospice system, which began idealistically in the 1970s, is stretched thin and falling short of its original mission.

Many of the more than 4,000 Medicare-certified hospice agencies in the United States exist within larger health care or corporate systems, which are often under pressure to keep profit margins up.

Kaiser Health News discovered there had been 3,200 complaints against hospice agencies across the country in the past five years. Few led to any recourse. In a Medicare-sponsored survey, fewer than 80 percent of people reported “getting timely care” from hospice providers, and only 75 percent reported “getting help for symptoms.”

I called Edo Banach, the president of the National Hospice and Palliative Care Organization, to get the trade group’s response. He expressed sympathy for my father’s suffering but was adamant that good hospice experiences “far outweigh” the negative ones.

Granted, more than a million Medicare patients go into hospice care every year, so the complaints are in the minority. Mr. Banach told me he’s worried that drawing attention to what he called the “salacious” stories of failed hospice care means more families will turn to less holistic, less humane end-of-life care. That could be true. But then, should there be more transparency early on? Should the hospice reps explain that in most cases, someone will rush to your loved one’s side in a crisis, but sometimes the agency just doesn’t get the timing and the logistics right?

As the number of for-profit hospice providers grows, does that model provide too great an incentive to understaff nighttime and weekend shifts? The solution may have to come from consumer advocacy and better regulation from Medicare itself.

A new government-sponsored website called Hospice Compare will soon include ratings of different agencies, which will ideally inspire some to raise their game. When I looked up the agency we had used, its customer satisfaction rate for handling pain — based on the company’s self-assessment — was 56 percent.

I considered making a complaint in the days after my dad’s death, but frankly we were just too sad. Even now, I believe hospice is a better option than a sterile hospital death under the impersonal watch of shift nurses we’d only just met. But I wonder whether that hospital oversight might have eased my father’s pain earlier on that last day.

Ultimately, even without pain relief, he was probably more comfortable in his own home, tended by his children, doing our best.

But then I think: He deserved to have both.

Complete Article HERE!

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01/8/18

Assisted dying in religious facilities means tough choices for families

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Barry Hyman always swore he’d die peacefully on his own terms. But living in a faith-based nursing home put his family in a difficult position to help him

Lola Hyman and her son Jackson look over photographs of Lola’s father Barry Hyman at their home in Vancouver.

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On the night that 83-year-old Barry Hyman was to receive a doctor-assisted death, his daughters were on edge, petrified that at any moment someone would burst through the door and stop them from granting their father his final wish.

Enfeebled by a stroke and diagnosed with lung cancer, Mr. Hyman had asked to die at home.

But his home at the time was a publicly funded Jewish nursing home in Vancouver whose board forbade assisted deaths on site, saying the newly legal practice violated the values and traditions of the Jewish faith.

That left Lola Hyman, the younger of Mr. Hyman’s two daughters and his main caregiver, with a choice.

She could transfer her father to an unfamiliar clinic to die, or she could sneak Ellen Wiebe, one of the country’s leading doctor-advocates of assisted dying, into her father’s room to help him die in his own bed.

Lola and the rest of her immediate family settled on the latter. They would deal with the fallout later.

Their first priority was making sure that Mr. Hyman died peacefully on his own terms, as he’d always sworn he would.

“The room was very quiet. We just held his hand and stared at him,” Lola said. “My sister was sobbing, just sobbing. I was a stone. A complete stone. My heart was racing that someone would open the door.”

nstead of focusing on their goodbyes, the Hyman family spent the last moments of Barry’s life worrying that they would be discovered and prevented from completing a legal medical procedure inside a publicly funded care facility.

Their story is an extreme example of the choices that grievously ill Canadians still face – 18 months after Ottawa’s assisted-dying law took effect – if they wind up near the end of their lives in a hospital or nursing home that refuses to allow assisted dying, either for religious reasons, or because the facility has simply decided to say no.

It is not clear if these institutions enjoy the same Charter-protected religious freedoms as individuals when it comes to refusing assisted deaths because the issue has not yet been tested in court.

In the vast majority of cases, such patients are transferred to another facility to die. But it isn’t always easy to find a place to send them.

Sometimes overcrowded secular hospitals say no. Sometimes the only hospital or nursing home in town is faith-based.

Other times, an unconventional location has to suffice: In Vancouver, Dr. Wiebe has opened her women’s health clinic after-hours for 34 assisted deaths, which means that in some cases, Catholic health-care facilities have transferred patients to an abortion clinic to die.

Canada’s religious health-care organizations, which have been tending to the sick in this country since long before Medicare, say they are doing their best to support terminally ill patients without betraying their own faith, offering options like palliative sedation to make patients’ natural deaths as painless as possible.

Some have softened their objections to the early parts of the medical-aid-in-dying process, allowing outside doctors to come in and conduct eligibility assessments on patients who are too fragile to be transferred for an appointment.

But when it comes to actual physician-assisted deaths, religious facilities – be they Jewish, Baptist, Catholic or otherwise – are refusing to allow the practice on their grounds.

“The core issue … is that Catholic and faith-based organizations are committed to the inherent dignity of every human life and would never intentionally hasten the end of a life,” said Christopher De Bono, vice-president of mission, ethics, spirituality and indigenous wellness at Providence Health Care, a Catholic health-care network that includes St. Paul’s Hospital in downtown Vancouver.

Nobody on either side of Canada’s assisted-dying divide is arguing that individual doctors or nurses should have to participate in assisted dying if they object to it, said Shanaaz Gokool, the chief executive officer of the advocacy group Dying with Dignity Canada.

But she is incensed that every province with faith-based health-care organizations except Quebec has allowed taxpayer-funded hospitals and nursing homes to refuse requests for a procedure the Supreme Court of Canada has declared a Charter-protected right. (And even Quebec allows some hospices to opt out.)

“Why are we making this so hard for people when it’s the one medical treatment that you have a legal right to in this country?” she said.

Throughout Barry Hyman’s long and colourful life – through founding a small publishing company, raising two daughters, divorcing twice, studying history and English literature at Simon Fraser University as a senior citizen and logging countless hours at casino poker tables – he told anyone who would listen that he had no desire to linger if his health failed.

“Ever since I can remember, and I mean over 50 years, my father has always told me that if he ever got to the point that he no longer had the ability to comprehend, the ability to socialize, the ability to do the things that he wanted to do … he was done,” said Leah Hyman, 54, Mr. Hyman’s eldest daughter.

Mr. Hyman, a Winnipeg-born businessman, dreaded one day losing the vitality that infused his life, first as a young waiter on the railroad, then as the founder of an Edmonton printing company that churned out small Jewish newspapers and government directories.

He also owned pool halls, nightclubs and a roller rink. He was still on J-date, the online Jewish matchmaking service, in his 80s.

“He just rolled up his sleeves and dove into everything,” Lola said – including introducing his only grandson, Jackson Doyle-Hyman, now 19, to the worlds of business and (responsible) gambling.

Mr. Hyman once took a kindergarten-aged Jackson to the track and showed him how to bet $10 at a time on the top horses.

Lola, now 51, later found cash spilling out of the pockets of Jackson’s little navy polo jacket.

As he grew older, Jackson often tagged along to business meetings where ad space was traded for car parts or hotel stays, a practice called “contra.”

Barry Hyman holds his grandson, Jackson, in 1998.

“We always joked that he could have built a Ferrari with all the car parts he got contra for,” Jackson said.

Mr. Hyman was already a diabetic with congestive heart failure when he was diagnosed with lung cancer early in 2016.

But his health didn’t really begin to deteriorate until an ill-fated trip to a tanning salon to treat his psoriasis.

The tanning bed left Mr. Hyman with a burn on his left foot no bigger than a quarter. The wound festered for nearly a year, despite every effort to heal it.

By October of 2016, doctors were talking about amputating his leg. Mr. Hyman instead chose to undergo a procedure in which surgeons bypassed a clogged leg artery that was keeping his foot from healing.

Ten days later he had a stroke, a known risk of the operation.

His mind was still sharp, but the stroke impaired his speech – a devastating blow for a man who adored the English language and insisted upon its correct use.

“This was a guy who read two papers a day and did the New York Times crossword,” Lola said, “And he no longer could do any of that.”

It was clear to Lola that her father could not keep living in his own apartment, as he had before the stroke.

The family’s first choice was the Louis Brier Home and Hospital, Vancouver’s only Jewish nursing home. But it was full.

Mr. Hyman during a portaging trip through the Northwest Territories in 1985.

Reluctantly, Mr. Hyman accepted a spot at St. Vincent’s: Brock Fahrni, a Catholic home where he shared a room with three other men.

Mr. Hyman and his family made a preliminary inquiry about assisted death with a doctor there, but it went nowhere.

When, in April of 2017, a bed in a private room became available at the Louis Brier Home, Lola leaped at the chance.

She knew that, like the Catholic home her father would be leaving, the Louis Brier did not permit assisted deaths on site.

She hoped that moving her father to a nicer place where he could live among his Jewish peers and Jewish culture would persuade him to abandon his talk of assisted death.

But Mr. Hyman wouldn’t let go of the idea. Although Lola didn’t want to lose her father, she was willing to help him fulfill his final wish.

On April 26, a week after moving to the Louis Brier, Mr. Hyman and Lola met Dr. Wiebe at her office.

A few hours later, Dr. Wiebe e-mailed Lola to say her father’s constellation of health problems made him eligible for an assisted death.

Dr. Ellen Wiebe sits in the room where she helps those wanting medically assisted deaths at the Willow Women’s Clinic in Vancouver.

When the Supreme Court of Canada struck down the Criminal Code prohibition on physician-assisted dying in February of 2015, the judgment made it clear that invalidating the law would not compel doctors to help their patients die.

The court was silent, however, on whether entire health-care organizations could bow out of medical aid in dying.

Parliament passed a law that was silent on the question, too, even though a special joint committee of the House and Senate had recommended that Ottawa work with the provinces to ensure all publicly funded health-care facilities provide medical assistance in dying.

Jay Aubrey, a lawyer with the British Columbia Civil Liberties Association, the group that helped topple the ban on assisted dying, predicted that a legal challenge against an objecting religious health-care facility such as the Louis Brier Home would be straightforward.

The home is 67-per-cent publicly funded and is therefore “acting in the shoes of government,” she said. “That’s why they’re bound by the Constitution.”

Ms. Aubrey sent a letter to the Louis Brier Home last May making that case on Mr. Hyman’s behalf.

But Richard Moon, a University of Windsor law professor and an expert in religious-freedom cases, said past precedents suggest public funding alone is not enough to saddle a third-party like a nursing-home operator with the constitutional duties of a government.

On the contrary, he said, religious health-care organizations could try – and might succeed, under the right circumstances – to claim they are entitled to the same Charter-protected religious freedoms as individuals, allowing them to rebuff government orders that breach their beliefs.

Prof. Moon said there could be a simple way around that: Provincial governments could withhold funding from health-care organizations that do not allow assisted dying, so long as they applied the rule without discrimination.

“It’s a matter of nerve here, isn’t it?” he said. “Is the government really willing to withdraw funding from these organizations? Are these organizations really willing to risk the loss of funding?”

So far, everywhere outside Quebec, the answer is no.

Grievously ill patients are instead being transferred out of non-participating institutions in numbers that are difficult to determine at a national level.

British Columbia’s five regional health authorities together logged a total of 61 transfers as of the beginning of December. Alberta has recorded 42; Saskatchewan is aware of at least 11; Manitoba has recorded eight.

The Maritime provinces say they are either not aware of any such transfers or are not tracking them.

The outlier is Ontario. Not only has Kathleen Wynne’s government declined to track transfers, it passed a law exempting hospitals, nursing homes and hospices from freedom-of-information requests about medical aid in dying, a move the province’s privacy commissioner denounced.

The blackout, which a spokesman for Ontario’s Ministry of Health and Long-Term Care said was enacted to protect health-care workers and institutions that provide assisted dying, makes it impossible to say how many hospitals in Canada’s most populous province are refusing to allow the practice.

But ministry officials have hazarded a guess: As many as 27 publicly funded Ontario hospitals – one out of every five in the province – would “potentially object to [medical aid in dying] based on their stated religious/ideological values,” according to an internal briefing note that Dying with Dignity obtained through a freedom-of-information request.

“There are 7 cities/towns in Ontario with potentially objecting hospitals that have no alternative hospitals within 100 km. Moreover, there are 4 other cities/towns with only one neutral hospital for the whole region.”

In Vancouver, when patients are looking for an alternative location to receive an assisted death, one option is Dr. Wiebe’s Willow Women’s Clinic on the 10th floor of a downtown high-rise.

The space has much to recommend it, according to Dr. Wiebe: wheelchair access, a separate waiting room for family and, in the larger of the two rooms she reconfigures for assisted deaths, a spectacular view of the mountains.

Still, there’s a makeshift feel to the arrangement. Patients take their last breaths on a bedsheet-draped patio recliner, the same piece of furniture on which the clinic’s regular clients recover after having an intrauterine device inserted.

In one “dreadful” case, a man who wanted to die without his family present was transferred from a Catholic facility and mistakenly left outside by a medical transportation service, next to the pounding of jackhammers, Dr. Wiebe said.

“We need to get to [the government] and say, ‘This is completely unreasonable – you can change it with the stroke of a pen,'” Dr. Wiebe said of the B.C. NDP’s decision to continue allowing publicly funded faith-based institutions to opt out of assisted dying.

B.C. Health Minister Adrian Dix declined an interview request for this story.

A spokeswoman for the Ministry of Health emphasized that all of the regional health authorities in B.C. have care co-ordination services that help smooth the transition for patients who have to move from one place to another for an assisted death.

She said the provincial government has “no plans to terminate” a long-standing agreement that allows members of a group called the Denominational Health Association (DHA) to refuse to provide services that are inconsistent with their religious values.

The DHA represents 44 health-care facilities in B.C., including the Louis Brier Home, where Barry Hyman wanted to die.


The entrance to the Jewish faith-based Louis Brier Home and Hospital in Vancouver.

A few weeks after meeting Dr. Wiebe, Lola Hyman e-mailed David Keselman, the chief executive officer of the Louis Brier Home, to formally ask that her father be allowed to die on site, despite the home’s policy.

Mr. Keselman sent his formal reply to Lola on May 25. “Quite some time ago,” he wrote, “the governing board, along with the leadership of Louis Brier, decided that Louis Brier will provide care and services to the residents according to the Orthodox Jewish stream.”

The home was willing to allow eligibility assessments, he continued, but not assisted death itself.

“Lola I realize that this may not be what you would have liked or have wanted to hear,” Mr. Keselman wrote. “If so I regret this.”

For weeks afterward, Lola weighed her options. She didn’t like the idea of sending her father to die at Dr. Wiebe’s office or an unfamiliar seniors’ home suggested by the care co-ordination service at Vancouver Coastal Health.

“The thought of doing my father’s provision in a clinical setting [with a bed] that looked like a dentist’s chair was so unsettling for me,” she said. “I didn’t share it with my father. I did not burden him with any of the logistics. I just said, ‘When you want it to happen, Dad, it will happen.'”

Mr. Hyman ultimately decided to die on June 29.

Leah and her wife, Tori, drove up from their home in Oregon that day to be with Lola and Jackson in Mr. Hyman’s room.

Early in the evening, Lola went to the front door of the nursing home to welcome Dr. Wiebe and a nurse as though they were old friends paying a visit.

They hid their medical equipment and lethal drugs in oversized bags.

Dr. Wiebe, her nurse and Lola went in to Mr. Hyman’s room and shut the door. Leah, Tori and Jackson stood guard outside.

When a nurse from the home came by to try to give Mr. Hyman his regular medications, Leah offered to deliver the pills, shooing the nurse away with a forced joke or two as though she were not minutes away from watching her father die.

“It was rough,” she recalled, crying. “I was not the best daughter. We just didn’t communicate well. We loved each other and we knew each other and we were there for each other. But this was the one thing I was going to make sure that we did, that we followed through on. He was going to go the way that he wanted to go.”

When Dr. Wiebe was ready to begin injecting the medications, Leah, Tori and Jackson came in and joined Lola at Mr. Hyman’s bedside.

He died peacefully in about 10 minutes that felt much longer to his family. “I’ll never forget looking at the door all the time,” Leah said, “terrified that someone was going to come in.”

In the end, nobody interrupted Mr. Hyman’s death. Dr. Wiebe filled out the death certificate, gave it to Lola, and left.

About 20 minutes later, Lola approached the home’s nursing station and did something she instantly regretted: She told them her father had died, but didn’t say how.

“I was frozen,” she said. “If I could go back, I would have walked up to that nursing station and said, ‘Dad passed of [medical aid in dying],’ but I can’t imagine what I would have been bombarded with as Dr. Wiebe was getting into her car.”

The next morning, after Dr. Wiebe reported the details of the case to Vancouver Coastal Health, Lola sent the Louis Brier Home a copy of Mr. Hyman’s death certificate.

The aftermath of Mr. Hyman’s death was hard on the home’s staff, especially the front-line workers who were initially puzzled by his unexpected death, Mr. Keselman said.

“We had no opportunity to communicate with the staff, to prepare them, to explain anything,” he said. “It was very traumatic.”

Mark Rozenberg, the chair of the ethics committee of Louis Brier’s board, emphasized that the home makes no secret of its opposition to assisted dying.

“Anyone who comes here knows what our policy is,” he said. “And if they don’t like the policy, they should go somewhere else.”

The home has since filed a formal complaint against Dr. Wiebe with the College of Physicians and Surgeons of British Columbia, the regulator for doctors in the province.

The complaint does not faze Dr. Wiebe; she is confident the college will see she was fulfilling her patient’s wish to die at home. (A college spokeswoman declined to comment.)

But Lola is heartsick at the thought of Dr. Wiebe in trouble, just as she is heartsick about having upset the front-line staff at Louis Brier.

None of this – including the stress her family experienced on the evening of Mr. Hyman’s death – would have happened if the government compelled all publicly funded health-care facilities to allow assisted dying, Lola said.

“Everyone is entitled to their religious beliefs and traditions and customs,” she said. “But when it comes to somebody who is very sick and dying, we need to have a different approach.”

Complete Article HERE!

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01/6/18

Diabetics May Often Fare Poorly in Hospice Care

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By Serena Gordon

Decisions about diabetes care can become harder as people age, and that may be especially true for those needing hospice care.

A new study has found that, among people getting hospice care in a nursing home, diabetes care may lead to higher rates of dangerous low blood sugar episodes, known as hypoglycemia.

That finding came from the researchers’ analysis of data on nearly 20,000 people with type 2 diabetes, all in nursing homes and receiving hospice care.

In 180 days, the time period covered by the study, about one in nine people experienced low blood sugar episodes. But, among those treated with insulin, about one in three had low blood sugar episodes, according to the study’s lead author, Dr. Laura Petrillo, an instructor in medicine at Harvard Medical School.

Low blood sugar can cause weakness, sweating, confusion, shakiness and dizziness, which can cause suffering and reduced quality of life. The researchers defined low blood sugar episodes as blood sugar levels under 70 milligrams per deciliter (mg/dL).

“Hospice is care focused on maximizing comfort at the end-of-life, and usually includes stopping treatments that are unlikely to have short-term benefits,” Petrillo said. “Patients with type 2 diabetes were experiencing hypoglycemia, which would be an indication that there was room for improvement in their diabetes care.”

The study also looked at high blood sugar episodes, defined as blood sugar levels over 400 mg/dL. High blood sugar — hyperglycemia — can cause excessive thirst and a need to urinate more frequently. During the 180 days, 38 percent of patients treated with insulin had low blood sugar, 18 percent had severe low blood sugar and 35 percent had high blood sugar.

Blood sugar levels were checked an average of 1.7 times a day for people on insulin and 0.6 times a day for those who weren’t given insulin, according to the report.

People in the study were receiving end-of-life care at Veterans Affairs nursing homes between 2006 and 2015. All were 65 or older, and nearly all — 98 percent — were men. About 83 percent died before 100 days.

The study findings bring up an important issue — the need for more specific guidelines for diabetes management in nursing home and hospice patients, according to Dr. Joel Zonszein, director of the Clinical Diabetes Center at Montefiore Medical Center in New York City.

Those institutions often “export guidelines for hospitalized patients, and end up continuing to use a lot of medications that cause hypoglycemia,” he said.

Zonszein noted that insulin isn’t the only medication that can cause low blood sugar levels. Some oral diabetes medications also can cause blood sugar levels to drop too low.

In addition to causing people to feel terrible, low blood sugar levels can also increase the likelihood of falls — a concern in hospice facilities and in nursing homes, he explained.

“If medications are not improving quality of life in hospice, it doesn’t make sense to use them,” Zonszein said. “There are many newer medications that don’t cause lows and control the highs. They cost more, but you don’t have to monitor patients as much,” so ultimately they’re likely cost-saving, he suggested.

Matt Petersen, managing director of medical information for the American Diabetes Association, said that the study adds to the understanding of end-of-life care for people with diabetes.

“Hypoglycemia is to be avoided for safety and quality of life, but severe hyperglycemia is also to be avoided for the same reasons — left to go too high, glucose levels can lead to catastrophic (and very unpleasant) metabolic crisis,” Petersen said. “In patients that may not be eating well, estimating insulin dosing to match food intake can be challenging.”

Petersen said it appears from the information provided that patients in the study were receiving individualized care based on their health condition, which is what the American Diabetes Association recommends for care.

“Care should involve a comprehensive consideration of what will ensure the best circumstances for the patient,” he noted.

The study authors pointed out that about one-quarter of people in the United States die in a nursing home, making this a problem many people might face.

What, then, can people do to ensure they or a loved one receives the right care for them in a nursing home, particularly as they near the end-of-life?

“Advocate for your loved ones,” Petrillo advised. “Ask for a medication review, and make sure that medications are geared toward providing comfort and that they’re not receiving anything that doesn’t have a short-term benefit.”

The study was published as a research letter in the Dec. 26 online edition of JAMA Internal Medicine.

Complete Article HERE!

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