At death’s locked door Anguished patients, families lose faith in health system when right to die takes back seat to care facility's religious beliefs By: Jane Gerster Posted: 3:00 AM CST Saturday, Feb. 24, 2018 Last Modified: 12:41 PM CST Monday, Feb. 26, 2018

Hey there, time traveller!
This article was published 23/02/2018 (2400 days ago), so information in it may no longer be current.

One Friday last December, Karin Woods asked the nurse at St. Boniface Hospital to sedate her husband so he would barely feel his own death. She asked for more sedatives repeatedly over the weekend.

George Woods had pleural mesothelioma from workplace asbestos exposure and she didn’t want him to die horribly — he didn’t want to die horribly — feeling as if he was suffocating right up until the very moment he stopped breathing.

On Monday, Dec. 11, he died. He was 77 years old.

“Fortunately, he died a peaceful death,” Woods says, “but that’s not the point.”

The point, she says, is that he knew his death was coming and he knew it would likely be painful, so he wanted to invoke his right to medical assistance in dying in hopes of making an already agonizing process less so. The provincial Medical Assistance in Dying (MAID) team had already assessed Woods once at home by the time extreme pain forced him into the hospital. He asked not to be taken to St. Boniface because he knew the Catholic-based facility doesn’t allow assisted deaths on site, but Woods says that was where the couple was told a bed was available, so that was where they had to go.

In the end, staff in the hospital’s palliative unit and the members of the MAID team determined Woods too frail to be transferred without sedatives, which would render him unable to provide the consent necessary for an assisted death, making the transfer futile. So Woods leaned in to her husband’s side, asking the nurses for more drugs that would pull him under, and hoped death would come quick and painless.

“Just give him more sedatives,” she implored.

Of the 63 people who died with medical assistance in Manitoba last year, 10 — roughly 16 per cent — had to be transferred out of faith-based facilities. Of the 11 people who died with assistance in January, two required transfers.

Details of bungled transfers are starting to filter out elsewhere across the country. There is the mismanaged incident that prompted Providence Healthcare in British Columbia to apologize to one of its hospitals last May for “a foreseeable and preventable issue,” and then there is the wheelchair-bound man with multiple sclerosis in Vancouver whose catheter bag split open during a taxi transfer.

Three years after the Supreme Court struck down Canada’s ban on physician-assisted dying and nearly two years after the federal assisted dying law received royal assent, transfers have become a contentious battleground in the fight to reconcile equitable access with the rights of conscientious objectors.

● ● ●

When it became apparent the story of Cheppudira Gopalkrishna, whose request to die was tied up for months, was going to become public, the Winnipeg Regional Health Authority and Misericordia Health Centre (MHC) found themselves in a rare disagreement.

Gopalkrishna, an 87-year-old retired schoolteacher, has a form of ALS. He struggles with his memory. He’s lonely. His most fervent wish is to die and he hadn’t, as of that moment last fall, been able to connect with the people who could assess him and deem him eligible.

A story about his case will likely run “regardless of whether you comment or not,” wrote the health minister’s spokeswoman Amy McGuinness in an Oct. 22 email to Misericordia spokeswoman Heidi Klaschka, “it’s important that MHC is in the story.”

Klaschka, who had been waffling on an official statement due to privacy issues according to emails obtained through a freedom of information request, had a statement for the minister’s office to review within the hour.

In one bolded line, she made it clear the hospital felt the fault was not theirs: “Misericordia does not control the length of time it takes for the MAID team to be in contact with the patient.”

That the WRHA would flat out contradict Misericordia’s version of events became apparent days later when its then-spokeswoman Anne Bennett fired off the MAID team’s version of events to reporters without first running it past Misericordia. The major facts under dispute: that Misericordia staff not only provided Gopalkrishna with contact information for the team when he first asked on May 1, 2017, but that they also told the team about his request (the MAID team says that’s not the case). Also, whether he was physically able to connect with the team on his own (they say no, the hospital says yes).

“Would have appreciated seeing this in advance of you sending,” Klaschka wrote.

Within an hour, the issue had been elevated to Misericordia’s then-CEO Rosie Jacuzzi, who wrote to the WRHA’s chief health operations officer and asked for a retraction.

“This should be about the patient and not about faith-based facilities as we have a process that provides access to patient(s) inquiring or needing access to (the) MAID assessment process,” she wrote.

By the time Gopalkrishna’s story went public Oct. 26, the region and its faith-based facility had settled on their narrative. Jacuzzi wrote to Klaschka that when the WRHA’s CEO Réal Cloutier spoke to reporters he would emphasize it was the hospital’s first assisted-dying request, a learning experience.

“He is trying to put all of us in the same boat and wants a united front,” she wrote.

At the Thursday press conference, Health Minister Kelvin Goertzen called the case “troubling,” while Cloutier stuck with the agreed upon approach: “Obviously, we need to do much, much better.”

Gopalkrishna was transferred out, assessed and transferred back to Misericordia after the MAID team deemed him not yet eligible for the procedure. Health authority leadership began a months-long process to try to figure out where communication had gone wrong and how similar situations could be avoided in the future.

“You learn from these things,” Cloutier said in a recent interview.

“The timelines were tight. People were trying to gather information and respond and sometimes there was a little bit of a lack of clarity around the policy and procedures, which we’ve now cleaned up.”

On Dec. 19, following an extensive consultation, the WRHA board approved a new MAID policy, including proper procedures for transferring patients out of faith-based facilities. Individual facility policies were due Feb. 15 and expected to be sent off to Manitoba Health shortly thereafter.

“We’re in a much better place today,” Cloutier said.

And yet, Cory Ruf of Dying with Dignity Canada notes the regional policy contains one stipulation that underscores why people can still be left without the care for which they’re eligible. It states that every facility policy must make it clear that a person may not be able to access MAID if they are deemed “too ill or frail to be transferred.”

So you have George Woods, in the process of being assessed for medical assistance in dying when he has to be hospitalized for pain and has no say in where he is taken for treatment. Because its St. Boniface, his ability to access MAID becomes less certain.

“Even if St. Boniface Hospital and the WRHA and other bodies (such as Misericordia) are working to streamline their communication,” Ruf says, “it doesn’t eliminate the risk of a patient’s rights being denied unfairly.”

● ● ●

When St. Boniface opened its doors in 1871 with just four beds, it was the Grey Nuns who welcomed the first patients. More than a century later, the Prairies have evolved, but the hospitals the clergy built remain.

There is an expectation, says Brendan Leier, a clinical ethicist with Alberta Health Services, that these facilities at least align with Canadian constitutional values. You hold respect for their legacy in one hand, he says, while also being attentive to the people they care for now.

“Oftentimes the devil’s in the details,” Leier says.

Meaning, you can accept clearly that it’s not OK for them to be biased with whom they provide healthcare to, while at the same time struggling with some of the greyer considerations: “Should your hospital have to take the cross down in your room if it’s the only hospital in town and that makes you uncomfortable?”

People are still grappling with those questions.

What has clearly changed, Leier says, is the faith of the people staffing faith-based facilities.

“The majority of people working inside of these institutions are secular people,” he says, “or at least don’t share that religious affinity.”

That was made clear last June when the Catholic Health Corp. of Manitoba (CHCM) reshuffled the St. Boniface Hospital board in order to overturn a vote that would have allowed assisted dying on premises under limited circumstances.

Internal April 2017 memos from Dr. Marcus Blouw, the hospital’s medical staff president and board member at the time, made it clear there was staff support for such an amendment. Blouw had encouraged staff to reach out to him with their thoughts.

Of 65 responses with firm positions on the matter, the vast majority felt MAID needed to be available “to all Canadians, in any institution that receives public funding, regardless of that institution’s historical or religious affiliations.”

At the time, Blouw also registered concern about how many staff expressed worries to him about “the potential to suffer professional or personal repercussions for voicing strong opinions on this polarizing topic.”

He wrote to staff: “For myself, and for the majority of you who have chosen to speak to me about this over the past year, there is no debate: any practice that favours the sentiments of the institution over and above the needs of the patient would not be consistent with the stated mission, vision and goals of the hospital, nor does it foster good patient-physician relationships.”

When the board met near the end of May to consider a policy on MAID, it amended it to allow assisted dying on the premises in cases where a transfer would have been risky or ill advised. The amended policy narrowly passed, prompting the CHCM to add 10 new members to the board and “respectfully” ask for a re-vote since assisted dying, even in limited forms would be, “contrary to the ethical commitments of the health-care and social service organizations the CHCM controls.”

In his subsequent resignation letter, the then-St. Boniface board chairman Murray Kilfoyle said transfers were of serious concern: “I will be unable to support a policy I believe allows for the undeniable reality of transfers of care that harm patients.”

While the hospital’s then-chief executive officer (now chief medical officer of the WRHA) Dr. Bruce Roe said at the time that a plan for a new assisted-dying policy would be “shared in the coming weeks,” internal emails indicate patients continued to feel left in the lurch, their providers uncertain and hesitant — and not just at St. Boniface.

In a memo dated Sept. 29, Dr. Mike Harlos, head of the WRHA’s palliative-care program, wrote about stories from the provincial assisted-dying team about patients that “have felt abandoned and left to their own devices with regards to contacting the MAID team. This has left some feeling stigmatized because of their interest.”

Harlos went on to clarify that staff didn’t need to clear conversations or referrals for MAID with senior management; they could just provide the information. Still, he noted that it’s essential to have good communication.

“It’s important in each situation to be very clear who will be contacting — i.e. patient, family, or our staff — to avoid misguided assumptions that the other person is doing so.”

The Free Press obtained this memo along with other internal emails through a freedom of information request. St. Boniface Hospital initially tried to block the request, in part, on the basis it felt it had been “very open in sharing its position on medical assistance in dying with the media.” It reconsidered at the encouragement of the Manitoba Ombudsman.

Still, when it comes to sharing information about assisted dying, St. Boniface has its limits.

Hélène Vrignon, the hospital’s communication director, refused a request from a patient’s family late last August to put up a poster inviting patients to see a presentation about assisted dying offered by the MAID team.

In an email to the Free Press, Vrignon explained that, “While St. Boniface Hospital does not support the promotion of MAID via pamphlets, posters or presentations, we respond quickly and compassionately to requests made by patients and families when they seek information about MAID by directing them to the MAID team.”

But restricting pamphlets and posters is cause for concern, says Ruf.

“An information session does not mean that MAID is being promoted or advertised,” he says. “It’s alarming that a publicly funded institution would not even allow literature that would speak to the existence of an information session.”

Patients in St. Boniface won’t see pamphlets or posters, but that doesn’t mean conversations aren’t happening.

While Woods lay dying, his wife had many chats with the palliative-care staff working to make his death as peaceful as possible. They weren’t shy, she says, about sharing with her that they thought Woods should be allowed his assisted death and that others should be, too.

Karin Woods remembers thinking: these are the frontline workers. These are the people who know.

● ● ●

Leier is of the mind that where there are other options — other hospitals, other personal-care homes — requiring a patient to transfer out of a faith-based facility is OK.

You can’t impede a patient’s right to be processed for an assessment or a transfer, he says, but “it’s very difficult to say you need to be forced to do this, especially in a city like Winnipeg where there are many, many hospitals.”

That argument isn’t one Dr. Ellen Wiebe can abide.

She made headlines last month for helping a patient die in a Jewish personal-care home in British Columbia that explicitly does not allow it. She is unrepentant.

“They’re saying if you want MAID, go somewhere else… but that’s not how we deal with human rights,” Wiebe says. “If you’re a publicly funded facility and this is a legal medical procedure, then you have to be able to offer it or allow it.”

What Woods wishes is that her husband could have been allowed to plan ahead. It enrages her to think that he knew he wanted an assisted death and was in the process of obtaining it, but because he would have lost capacity during a transfer to a non faith-based facility, he wasn’t allowed to have it.

“It’s a mistake,” she says. “There should be a situation where you give your permission no matter what.”

They have to go back to the courts, Woods says, they have to address the uncertainties that have continued to permeate the assisted-dying debate even now, nearly two years after implementation of the federal law.

And they likely will, although Carissima Matthen, who teaches constitutional law at the University of Ottawa, says a case on faith-based transfers would take “a lot of time” to reach the Supreme Court.

It’s not necessarily a charter violation for faith-based facilities to exercise their medical judgment and say a patient such as George Woods is too ill for transfer, she says.

“But when its combined with the fact that the person, by virtue of their policy, is being forced to stay in a place where they are being denied something that the Supreme Court says they have a right to because of religious issues that shouldn’t be determining their health care,” Matthen says, “potentially, I think you do have a charter issue.”

● ● ●

There is a line in George Woods’ obituary that says he was fortunate not to need medical assistance in dying. It follows descriptions of skiing trips to Banff (he was a runner, a skier, energetic to a fault) and precedes plans for his son to scatter his ashes on one of his favourite slopes in Rossland, B.C.

His wife wrote it, although it’s not exactly what she wanted to say.

She is grateful, yes, that her husband died peacefully. But she wishes that he had died on his own terms.

The couple, married since 1963, had long followed the right-to-die debate in Canada. They’d watched as Sue Rodriguez, a Victoria, B.C., woman who suffered with amyotropic lateral sclerosis (ALS), pleaded her case before the Supreme Court, losing narrowly 5-4 in 1993, the same year a Gallup poll found that more than three-quarters of Canadians actually approved of assisted dying.

They kept paying attention decades later as Winnipegger Susan Griffiths wrote her own obituary before travelling to Switzerland to receive medical assistance in death in April 2013. In it, Griffiths laid out why “the CHOICE of death with dignity at a time determined by oneself and with qualified assistance should be available to everyone in Canada.”

Woods wishes her husband hadn’t been denied that choice. What she wishes had been published in his obituary is a description of the hospital room where he died. She wants people to see what he saw out his window: the Canadian Museum for Human Rights.

“How ironic,” she says.

jane.gerster@freepress.mb.ca

Twitter: @Jane_Gerster