Award-winning Dying With Dignity Series

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Editor’s note: The following series of articles by Gulf Islands Driftwood reporter Elizabeth Nolan appeared in the Nov. 29, Dec. 6 and Dec. 13, 2017 issues of the Driftwood newspaper. Since the articles have won best feature series awards in both B.C. and Canadian community newspaper association competitions and been nominated for a Jack Webster award for community reporting (with winners to be announced Oct. 29), several people have requested the articles be posted online.  

DYING WITH DIGNITY PART I

Published in the Gulf Islands Driftwood newspaper on Nov. 29, 2017

Salt Springers at forefront of right-to-die movement

Nearly six months to the day after medical assistance in death was legalized in Canada,    a different but related “first” was taking shape in the pages of the Gulf Islands Driftwood.

The Dec. 21, 2016 issue included two obituaries for Salt Spring Island residents with explicit reference to the right to die with dignity.

The notice for Joe Benge stated his full and varied life journey began in a Chicago suburb and led to the Canadian wilderness, but in his final days “he was bedeviled by increasingly serious chronic obstructive pulmonary disease that literally took his breath away . . . He used the new Canadian law permitting physician-assisted death as the best ending.”

A second obituary, for Roy Kaighin, mourned someone who had been ineligible for such assistance because he had Parkinson’s disease.

“If I could leave you with any thoughts, let it be this. Canadians need to change their mindset about assisted death,” Diane Alton-Kaighin wrote as a final message, after summarizing her husband’s many accomplishments in the military and as a musician.

“It is not killing someone, it is relieving their suffering. Please support Dying with Dignity Canada. It is inhumane for the unnecessary suffering of the person who is ill and their families who have to watch,” Alton-Kaighin concluded.

The unprecedented discussion playing out in the pages of a small rural newspaper echoed the situation taking place across the Vancouver Island region, British Columbia and Canada as a whole. Islanders and Canadians had advocated for and won their right to a compassionate death with the landmark Supreme Court decision Carter v. Canada in February 2015, and took up those rights as soon as they became available after federal legislation passed on June 17, 2016. Patients with intolerable conditions and their families soon found, however, the legislation doesn’t meet the full intent of the ruling and shuts out many of the people who would like to have the choice of a medically assisted death. Looking at the situation more than a year later, it’s evident that barriers to access continue to exist, even for those with eligible conditions.

Over the next three weeks, the Driftwood will look at Salt Spring’s role in the national situation, the challenges to accessing service in a small community, and the systemic barriers that are restricting medical assistance in death here and across Canada. 

A SHIFTING TIDE

“Joe did not want to have a painful lingering ending, so he was prepared to do something even on his own,” said Beate Denz, Benge’s partner of 10 years. “I am glad he was able to have assisted suicide. It kind of legitimized the process of ending one’s own life without being criminalized for doing so.”

Before 2016, Section 241 of the Canadian Criminal Code stated that anyone who counselled or aided another person to commit suicide was liable to charges leading to imprisonment. That included doctors with patients who were suffering and close to death and had asked for help to bring about that death sooner.

Court challenges by the BC Civil Liberties Association and individuals seeking to end their own pointless suffering helped create awareness and convince the vast majority of Canadians that under certain conditions, a compassionate death should be a right. An Angus-Reid poll conducted in 2012 found over 80 per cent of Canadians supported doctor-assisted suicide.

Gulf Islands residents have been part of the groundswell of support right from the beginning and, as members of the Vancouver Island Health Authority (Island Health), are part of a larger community that is asserting its rights.

“The islands are a beacon of hope for other parts of the nation, and also the world,” Cory Ruf, communications coordinator for Dying with Dignity Canada, told the Driftwood this year. “The leadership is there — there’s a lot going on.”

This is perhaps due in part to the prominent case of Sue Rodriguez, a Victoria resident who fought for the right to die in the early ‘90s and then had illegal help from a physician when her challenge failed. Kelowna resident Gloria Taylor, who like Rodriguez was diagnosed with ALS, became the face of the BCCLA legal battle in 2011. She received a personal exemption to the law after the BC Court of Appeal ruled against the federal government, but died in 2012 before assistance could take place.

In this environment of awareness, Salt Spring residents formed the first chapter of Dying with Dignity Canada to organize outside of Ottawa. Joan Farlinger and Marcia Hogan started the chapter in the fall of 2012 after attending an info session with Dying with Dignity Canada’s then-CEO Wanda Morrison held at the Lions Hall.

By 2013, the Salt Spring chapter had launched a petition asking the House of Commons “to respect the will of Canadians by enacting new legislation that provides clear guidelines to physicians, and provides competent, fully informed, and terminally ill patients the option to make their own end-of-life decisions.” Saanich-Gulf Islands MP Elizabeth May brought the petition to Ottawa, although the evidence of public opinion failed to sway the Conservative government in power at the time.

Dying with Dignity Salt Spring members were among those who celebrated when the Carter decision of 2015 ended criminalization of medical assistance in death, and ordered the federal government to draft supporting legislation. According to the Supreme Court of Canada, medical assistance is a right as long as the recipient is “a competent adult person who clearly consents to the termination of life and has a grievous and irremediable medical condition, including an illness, disease or disability, that causes enduring suffering that is intolerable to the individual in the circumstances of his or her condition.”

EARLY ADOPTERS

During the first year that medical assistance in death was available, people living in the Vancouver Island region took the opportunity at a much higher rate than those living in the rest of British Columbia and Canada. Of the 500 MAID deaths recorded in B.C. between June 17, 2016 and June 30, 2017, nearly half (210) were from the Vancouver Island Health Authority, despite it having only 16 per cent of the provincial population. The island region accounted for fully one-tenth of all the assisted deaths in Canada over the same period.

Salt Springers were again in the vanguard: Benge was one of the first islanders to choose a medically assisted death, after his chronic obstructive pulmonary disease intensified over several years.

On Oct. 28, 2016, Benge won the juror’s award for his submission to ArtSpring’s exhibition Surfacing, with a photo he called Spiffing Up the Entrance. He told the show’s coordinator how happy he was to receive the honour, and that he was now looking forward to his assisted death. He received the medical service he sought at home on Nov. 16. He was 85 when he died.

Though for Benge the choice may have been easy, it wasn’t a simple matter for the people around him.

“I am still suffering an emotional sense of loss … of my own life with Joe,” his partner Beate Denz told the Driftwood in June. “I was not in support of Joe doing this assisted suicide. To know he wanted assisted suicide and be there by his side until the time came was unbearable. My heart was pounding in my chest every time I dwelled on what he might be feeling or anticipating — as if it was my life that was going to ‘drop off’ but, it was Joe’s.

“At times I wish he did have a quick death, but he continued on enjoying many days and then when assisted suicide was legalized he made the decision to make arrangements for a doctor to come to his home.”

After a painful period of waiting for phone calls and then a date, a provider came over from Vancouver Island. So far there are no family physicians on Salt Spring who have registered as providers of medically assisted death, perhaps because it would be impossible to keep the fact private in a small community. A Salt Spring doctor did help Benge get the assessment necessary to arranging the physician who provided the assistance.

Denz said it was Benge’s wish to mention the manner of his death in his obituary, as he wanted to get the message out that he had planned it even though he could have lived longer.

“He was an ‘ad man’ from Chicago. He was good at telling a story and this one was his best one,” she said.

LEFT BEHIND

Because of the years of pain he endured, Benge’s story cannot be called a happy one, but it does end with a compassionate release. And it is a marked contrast to the story Roy Kaighin’s wife felt compelled to share in his obituary, about what happens when that relief is denied. Part two of this series will delve further into Kaighin’s situation and explain how federal legislation has failed to offer the breadth of assistance the Carter decision seemed to promise.

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DYING WITH DIGNITY PART II

Published in the Gulf Islands Driftwood newspaper on Dec. 6, 2017

Legislation short-changes Canadians in pain

On June 17, 2016, Canada became one of the few jurisdictions in the world to legalize and regulate assisted suicide.

Acting on orders of the Supreme Court of Canada, following a human rights case argued by the B.C. Civil Liberties Association, a government led by the Liberal party created the framework in which Canadians could choose a death that would preserve their “autonomy and dignity.”

Ironically, the key plaintiff in Carter v. Canada would not have had access to the right she helped secure for other Canadians. Kay Carter suffered intolerable pain and psychological distress because of spinal stenosis. The degenerative condition confined her to a wheelchair, and she was unable to feed herself or go to the bathroom on her own.

Carter chose to end her life at a legal clinic in Switzerland in 2010. Had she lived long enough to see the BCCLA win decriminalization in Canada on her behalf, she wouldn’t be eligible under the wording of Bill C-14, which sets a terminal diagnosis as one of the criteria for eligibility.

“In its current form, it’s legislation that discriminates on age, mental status and level of health. If you ever find yourself spiraling towards a hideous but nonterminal condition, know that Bill C-14 will ensure that you are kept alive to lengthen your suffering until you die naturally,” an emotional Price Carter, Kay’s adult son, told a Vancouver news conference shortly before the legislation passed.

As Price Carter predicted, prohibiting some people from medical assistance in dying (MAID) while granting it to others has created an inequitable situation in Canada. More than the unfair nature of ranking classes of pain or illness, this has left countless Canadians without an escape.

LIMITS OF ELIGIBILITY

Dying with Dignity Canada is a national not-for-profit organization committed to improving Canadians’s quality of dying and helping avoid unwanted suffering. Its work has shifted, but not ceased, with the legalization of assisted suicide. Communications coordinator Cory Ruf explained the organization continues to offer education and support for people exploring how to access medical assistance in death. But even with decriminalization, much work remains to ensure that help is available to those who really need it.

“A big part of it is human rights advocacy — we’re advocates for the rights of Canadians for compassionate end-of-life choices, whether that’s now, or whether those rights are available to exercise in the future. Since the passing of Bill C-14 this has become more nuanced, because of the barriers Canadians have encountered in trying to access those rights,” Ruf said.

With the Carter decision, the Supreme Court recognized the right to physician-assisted suicide for “a competent adult person who clearly consents to the termination of life and has a grievous and irremediable medical condition, including an illness, disease or disability, that causes enduring suffering that is intolerable to the individual in the circumstances of his or her condition.” Fears that euthanasia might be enforced on the unwilling ended up narrowing the court’s interpretation when it got to the political level.

While the Senate voted to remove the “reasonably foreseeable” clause before the bill was passed, the House of Commons refused to accept their proposed amendment.

“Our position as an organization is this is problematic for the same reason that the ban on assisted death was problematic in the first place — Canadians are forced to suffer intolerably for months, for years, or potentially even for decades,” Ruf said.

“We see it as a political reconfiguration of the right to an assisted death. Limiting eligibility is not itself a safeguard [against abuse], it’s saying a group as a whole can’t access a right because of the progression of their condition.”

MEANINGFUL DEATH

Salt Spring resident Diane Alton-Kaighin was forced to endure that very scenario with her husband Roy Kaighin, who died last December after years of decline. A gifted musician, composer and musical arranger who spent his career in the Canadian military, Kaighin had a rare symptom of Parkinson’s called Bradykinesia, which causes slowed motor function rather than the constant tremor usually associated with the disease. With a gradual loss of physical and cognitive abilities that can take years to unravel, the disease currently isn’t considered a terminal condition and so doesn’t qualify for MAID under Canadian rules.

“I just think we have to have respect for people. If they’re ill and they want to go, why have them suffer? It doesn’t make a lot of sense,” said Alton-Kaighin. “You want a meaningful death, so if there’s a way to provide it, it’s providing what most people want.”

Alton-Kaighin spent many years fighting for her husband’s health rights. At first it was just getting a doctor to recognize Kaighin was ill and correctly diagnose him, which did not happen while he was still enlisted despite obvious signs something was wrong.

After Kaighin was discharged from the military, he was immediately diagnosed with Parkinson’s by a family doctor.

“We knew the prognosis was not good. He said to me we had to put him in a home right away because I wouldn’t be able to cope,” Alton-Kaighin said.

She stayed on as his main caregiver anyway until Kaighin had lost most of his motor ability. He spent six months at Greenwoods residential care home and then his final 14 months at Lady Minto Hospital. Ineligible for assisted death, by the time he entered advanced care he could not have asked for one even if it had been available to him. Being able to demonstrate consent by requesting MAID just before it is granted is another requirement established by the bill.

“Roy hadn’t spoken for years. Someone with cancer can say they’re in pain, but [with Parkinson’s] we just don’t know. So I think that’s why they don’t allow it,” Alton-Kaighin said. “But I think people generally have to understand what people go through in the end stages. Parkinson’s is just horrendous. Everything starts to break down.”

While at Lady Minto Hospital, a feeding tube was inserted into Kaighin’s stomach. He was aspirating and couldn’t eat but was on medication that had to be taken through the digestive tract. His stomach couldn’t function properly, nor could his bowels, prompting medical intervention for the most basic human acts. Alton-Kaighin allowed the medical team to go ahead with the operation but now wonders why that humiliation was necessary so near the end of her husband’s life.

“He was getting it at both ends. It’s almost unbearable,” Alton-Kaighin said. “I’ve got dogs. We treat dogs better.”

LEGAL REVIEW

The requirement that a patient be near death to request medical assistance leaves out many people who might not have mental competence a few years down the line, but do at present. There is no mechanism for creating an advance request in the event one is no longer able to communicate one’s wishes, whether from being diagnosed with Alzheimers or dementia, or if some other calamity befalls.

The law’s over-protective nature does not match up with public opinion. A Global News Ipsos poll conducted in 2016 showed that 85 per cent of Canadians approved the idea of advance consent forms to some degree.

“Many or most supporters [of medically assisted death] wish to make a request while they’re still competent that could be honoured at a later date when they’ve lost capacity.  A lot of people are surprised that option is not available to them,” Ruf said.

Other conditions such as severe mental illness are also left out of the legal definition, as are minors who have a terminal condition. Brian Finnemore, a member of Dying with Dignity Salt Spring, knows of four different people through a B.C. chat group who did not qualify for MAID under existing rules. Like Kay Carter, they all went to Switzerland for help.

“It’s a nice procedure, but it’s expensive,” Finnemore said. “Especially if the family members want to be there.”

One of Finnemore’s contacts was denied access because his death was not reasonably foreseeable, although he had been treated for a brain tumour on and off for years.

“He could have lived for five to 10 years, but his suffering could not be controlled,” Finnemore explained.

Another online acquaintance was a physician who was diagnosed with the onset of dementia. Again, her end had no foreseeable timeframe.

Dying with Dignity Canada has heard similar reports.

“It’s heart-breaking to know after these individuals were granted a right and hoped they were able to access that right at home, they would have to go overseas with such an expense and all the work that’s involved in order to die in peace. We do know this is happening, and we’re alarmed by it,” Ruf said.

“It also raises issues around equity. It’s only those that have the wherewithal and community support who are able to make that trip to access it. It’s disheartening for a number of reasons, but especially in a country where we value equal access to health care.”

The Council of Canadian Academies is currently reviewing the situation around advance directives, mature minors and patients with intractable mental illness, and has been directed to report back to Parliament by late 2018. The independent panel will not be making policy or other recommendations, however, and there’s no guarantee the government will act on their findings or amend the bill to provide broader access.

In the meantime, the BCCLA is waiting to go to trial on a constitutional challenge to Bill C-14, filed less than two weeks after the legislation passed.

“Many critically ill Canadians are suffering unbearably as they wait for yet another trial of Canada’s assisted dying laws,” BCCLA counsel Jay Aubrey stated in October. “The only reason we are having this trial is that Canada’s government enacted a law that is unjustly restrictive and cruel. Sick and dying Canadians should not have to bear the burden of re-litigating facts that were already affirmed by our Supreme Court in 2015.”

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DYING WITH DIGNITY PART III

Islanders choosing assisted death despite barriers to access

Published in the Gulf Islands Driftwood newspaper on Dec. 13, 2017

Canadian legislation outlining the parameters for medical assistance in dying put strict limitations on who is eligible for the service. Having a terminal condition, intolerable suffering and a short-timeline for one’s end are required — but no guarantee that medical help will be available even if all of the above is in place.

Since the passing of Bill C-14 in June 2016, no person living on Salt Spring has received medical assistance in dying (MAID) from a locally based family doctor.

“As far as I know, the local doctors are all supportive but there’s no one willing to take on the procedure. And that’s too bad, because it could be done in the home,” said Brian Finnemore, a member of Dying with Dignity’s Salt Spring chapter. “I think from a patient’s point of view, dying in one’s own home would be the best option. That way one can create the environment and prepare spiritually and emotionally.”

“It would be a good death,” agreed Melynda Okulitch, a fellow Dying With Dignity member who is a lay chaplain with the Salt Spring Unitarian Fellowship. “I think those are few and far between — but we would all wish for that. I think a good death is when you’ve prepared yourself, prepared your family, you’ve done what you need to do.”

MEETING THE NEED

There are currently 150 doctors and nurse practitioners trained as MAID assessors and 17 medical professionals who actively provide MAID in the Vancouver Island region, compared to just seven in all of Nova Scotia. The region’s take-up in service also compares on the high side, estimated at five times that of the rest of Canada.  But the number of people who can handle and administer MAID drugs for Island Health may be unevenly distributed toward urban areas, with little incentive to move beyond home base.

Some Salt Spring residents have died at home with help from physicians who came over from Vancouver Island, and Dying with Dignity members say others have themselves done the travelling for a quiet end at Saanich Peninsula Hospital. Unfortunately, the requirement for a patient to be in intolerable pain to be eligible makes movement near impossible for many. It also takes away some of the agency and dignity that the Supreme Court’s 2015 Carter decision intended to restore.

“The principle challenge has been access to physicians who are willing to prescribe, in all locations. Salt Spring is one of those. That has been the principle issue and it’s not unique to the island,” said Dr. David Robertson, MAID coordinator for Island Health.

“This is an access problem for parts of Vancouver Island, and parts of the province and parts of Canada. We think it might be difficult on Salt Spring, but it’s nothing compared to Northern Health.”

Robertson’s role is to coordinate implementation of the MAID program in the facilities run by Island Health. Because most doctors in B.C. work as independent contractors, though, he said there is no way to implement a regional policy that ensures equitable access between rural and larger communities.

“Our policy is to ensure and support assisted dying in all our facilities within Island Health. We also support the rights of individuals to withdraw or not take part. But we have tried to ensure there are people who will prescribe the medication in every part of the island — and so far we’ve been successful,” Robertson said.

“The whole philosophy behind this and also behind the Supreme Court’s original judgement back in 2015 is to place the authority in the hands of the person who’s dying. We’re trying to do that as much as possible.”

BARRIERS TO ACCESS

Dr. Jonathan Reggler is a family physician from Courtenay who chairs Dying with Dignity Canada’s Physicians Advisory Council. He says one of the problems with finding MAID providers in small communities is the privacy issue. When he decided to take the training, for example, he was worried about how his family-practice patients and his nursing colleagues at the Roman Catholic St. Joseph’s Hospital might respond.

“I thought there was actually a very real risk that my patients would be upset with me and would want to be looked after by another physician,” Reggler said, although in fact the opposite situation occurred and both groups voiced overwhelming support.

Reggler has been a public advocate for access to compassionate death beginning with the early days of the legislative process. He went to the media to denounce the St. Joseph Hospital board decision to block access to MAID in their facility and has been a strong voice for patient rights ever since.

“My reason is because when and if I develop a grievous and irremediable condition that causes me intolerable suffering, I would like to have a medically assisted death, or at least have it available to me. So it’s appropriate for me to offer it to others now,” Reggler said.

To get started, Reggler and his colleague Dr. Tanja Daws set out to educate themselves on how to start up a practice, using research from the Netherlands and a Dying with Dignity webinar among their materials. They ended up writing a handbook that’s being used in many communities across Canada.

As they’ve found, it’s not as easy as just agreeing to be a provider. Aside from the training for the act itself there is complicated paperwork to get through — a recent report from the BC Coroners Service found 40 per cent of MAID case files from 2016 were missing forms.

Equitable remuneration for time served has yet to be worked out properly. Providers get a flat fee for administering the death, with a cap on their time that does not allow for the many tasks involved before and afterward.

“Doctors are not likely to take a very large reduction on income for what is very intensive work,” Reggler said. “There are still no billing codes to allow doctors to bill appropriately for MAID services. Because of the way doctors are able to bill, they are better off staying at their home offices.”

CRISIS OF CONSCIENCE

Reggler now routinely asks all his patients age 75 and older whether they would like him to include a conversation about MAID if they receive a terminal diagnosis. Between 90 and 95 per cent have said they would.

“In a way, that shouldn’t be surprising, because 86 per cent of people in B.C. support MAID, and 80 per cent of Catholics do — despite the position of the church against it,” he said.

The percentage of Canadian doctors that support MAID has been significantly lower than the rest of the population, however. A report by the Canadian Medical Association published in 2015 found its members were evenly divided on the issue of legalizing assisted dying, and the number of respondents who said they would offer the service were a “significant minority.”

In addition to the fact that providing MAID was a criminal act until just last year, this reluctance has a lot to do with doctors’ training about the purpose of medicine, which is based on the concept of “primum non nocere.” Segen’s Medical Dictionary interprets the Latin “first, do no harm” term as “a guiding principle for physicians that, whatever the intervention or procedure, the patient’s well-being is the primary consideration.”

Doctors may struggle to accept the idea that a patient’s well-being is best served by ceasing to live, while supporters of medically assisted death take a more liberal view.

“It shouldn’t amount to a denial of service,” said Joan Farlinger, a co-founder of Dying with Dignity Salt Spring. “The Supreme Court issued its ruling, and it was a good ruling.”

“I always think of it as ‘Do no harm.’ And you’re doing harm by forcing people to suffer,” Okulitch added.

If professionals trained in the health sciences have their doubts about assisted death, the religious community is often opposed; taking a life for any reason is forbidden in many faiths. That becomes a problem when patients are admitted to Christian facilities, which are sometimes the only type available.

A 1995 agreement between Island Health and facilities run by religious organizations allows those bodies not to provide services they don’t agree with. The agreement was drafted to cover abortion, but Reggler said it is now being stretched to include MAID as well. That’s different from individual doctors and nurses exercising their right to withdraw for personal reasons.

“It’s a big problem — 20 per cent of residential care beds on Vancouver Island are in control of religious entities,” Reggler said. “I think the idea of a facility being able to claim it’s a conscientious objector is wrong. Bricks and mortar can’t have a conscious.”

The Ontario College of Physicians and Surgeons is so far the only Canadian jurisdiction that requires doctors to provide an “effective referral” for patients who are seeking an assisted death if they themselves object to providing one, but that policy has been challenged in court by the Christian Medical and Dental Society.

Self-referral is available in jurisdictions like Island Health, but insufficient according to Dying with Dignity Canada.

“We don’t think it’s fair that someone who has a terminal cancer diagnosis be given a website or phone number to do their own research. We believe medical practitioners should have the right not to provide, but that must be balanced with the patient’s right to care,” said DWDC spokesperson Cory Ruf, adding the case could pose a troubling precedent if CMDS wins.

He said Dying with Dignity executive director Shanaaz Gokool has made a point of collecting the stories of people denied access and is taking them as the organization’s “north star” for future action.

“Something Shanaaz always says is in human rights, your work is never done. You still have to be vigilant to ensure that right is protected,” Ruf said.

 

 

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