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Patients face barriers in medically-assisted dying decisions

Part 2: A look at how patients navigate medical assistance in dying and what local health-care organizations are doing about it.
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Since a Supreme Court of Canada ruling in 2015 began the process of breaking down the restrictions against medical assistance in dying, Southlake Regional Health Centre has been preparing for the changes.

“We started work preparing for this long before the legislation came in,” said Jonathan Breslin, Southlake’s ethics officer. “Just starting the conversation, so people were comfortable with it.”

The Medical Assistance in Dying Bill C-14 was passed into law in June 2016.

By that time, the Newmarket hospital had already set up a policy and procedure taskforce to examine regulations and case studies, and to develop a process that respects the rights and concerns of physicians, nurses and patients.

“It’s all driven by the patient,” said Breslin, adding a patient must first make a request for end of life to the treating physician. “That starts an exploration.”

The next step may be a referral to palliative care for symptom relief and pain management, he said, but if the patient wants to proceed with a medically-assisted death, then the process set out in legislation begins, starting with a written request and two assessments of eligibility by participating physicians or nurse practitioners at the hospital.

“It’s very patient-driven to determine when they want it done, who they want present, where to have it done in the hospital,” said Breslin, noting a patient may withdraw his or her request at any time.

“Everyone sort of rallies around to meet the patient’s needs to ensure the patient receives the death they want in the way they want.”

Southlake has a new website to answer questions about medical assistance in dying.

The legislation “has come as a great relief for many people,” said Cory Ruf, communications officer with Dying With Dignity Canada, a national not-for-profit organization that advocates for and supports those who wish to die on their own terms.

At the same time, there are still significant barriers that can make it difficult for Canadians seeking an assisted death and add to the burden of grief for their families, he said.

The legislation has strict eligibility criteria: patients requesting assistance must be over the age of 18, capable, and suffering from a “grievous and irremedial” medical condition that causes intolerable physical and psychological suffering, and for which there is no treatment that is acceptable to the patient, he said.

Death must be already “reasonably foreseeable” — a restriction vague enough to cause problems for those wishing to pursue a medically-assisted death, noted Ruf.

Another barrier is the “well-intentioned but inappropriate” requirement that the initial request for medical assistance in dying must be witnessed by two “independent witnesses,” who neither benefit from the patient’s death nor are involved in providing health-care services, he said.

“It was designed as a safeguard,” but it has become a “barrier to access at a vulnerable time,” Ruf said.

Instead of approaching family members and caregivers, the individual may be forced to ask strangers to witness their most private health information, which is why Death With Dignity now trains volunteers to serve as witnesses.

The organization was among those providing input during the development of Bill C-14, and it identified a number of concerns, including possible constitutional issues.

At present, mature minors and the mentally ill are barred from requesting medical assistance in dying, and there is no provision for an advanced request for assistance that would provide peace of mind for those suffering from terminal illness.

The requirement that the patient must be “capable” at the moment of medical assistance in dying has consequences, especially “for people whose health situation is changing quickly,” such as people with progressing dementia or conditions requiring heavy doses of painkillers, said Ruf.

There are “many cases” where a patient that has made the request becomes ineligible for medical assistance in dying because of their deteriorating condition, he said.

“Certainly, there are many people who want to make an advanced request and have their request honoured,” Ruf said. “We hear of people refusing appropriate pain treatment because they are afraid they will lose capability.”

The Council of Canadian Academies is currently looking at the issues of mental illness, mature minors, and advanced requests, but they are unlikely to wrap up before the end of the year.

In the meantime, said Ruf, although the new legislation allows Canadians to plan for end of life “in a way that was never possible before,” there are still barriers.

“We hear from families who say it’s been very challenging, very difficult to navigate the process,” he said.

While hospitals like Southlake offer medical assistance in dying, those with a religious connection may not offer the service.

The legislation does require patients to be given an “effective referral” to a willing physician “in a timely manner,” but Ruf noted a patient may have to endure “an excruciating transfer to access it, or even to be assessed.”

And medical assistance in dying is not an option at most hospices.

At Matthews House Hospice in Alliston, the focus is on palliative care, pain management, and grief and bereavement counselling.

Medical assistance in dying can only be provided by physicians, and “in this area, the hospice doesn’t employ physicians,” said CEO Kim Woodland.

Most of those who come to the hospice are there for palliative care and family support at the end of life and may not meet the definition of “capable,” Woodland said.

It has been only two years since the legislation passed.

“The more time that passes, I think that we as a country will have a better idea of what it means,” said Ruf. “There’s a lot of work to do. We’re hopeful. We’re looking toward a health-care system that puts patients first,” respecting the right of the individual to make end-of-life choices.

As of March 31, 2018, a total of 1,352 Ontario patients have received medical assistance in dying, according to the Ontario’s Ministry of Health and Long-Term Care.

Only one of those cases was patient-administered. The others were administered by physicians and nurse practitioners — 52 per cent in hospitals and about 40 per cent in private residences. Private clinics and facilities are also involved. 

The ministry receives an average of 14 new requests or referrals every week, and a new Local Health Integration Network Renewal Transformation Palliative, End-of-Life and MAID working group has been established, to work on best practices and identify barriers and inconsistencies.

Said Ruf: “(Medical assistance in dying) has come as a great relief for many people. At the same time, we have a lot of work to do to make sure that it is readily available.”

Miriam King

About the Author: Miriam King

Miriam King is a journalist and photographer with Bradford Today, covering news and events in Bradford West Gwillimbury and Innisfil.
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