The day that Alice Tataryn asked for medical assistance to end her life and avoid a painful death, her daughter Susan Tataryn showed her a letter she had written to the Office of the Chief Coroner in Saskatchewan.

Alice was in a Prince Albert, Sask., hospital dying from terminal lung cancer that had spread into her skull, liver, spine and collarbone.

But in the process of pursuing medical assistance in dying, or MAID, the family learned that Alice's death would be recorded as a suicide.

A former nurse who saw many people suffer in the lead up to their deaths, Alice had also witnessed the painful cancer deaths of her niece in June and her best friend in July last year. She didn't want to die that way, so she requested medical help to end her life.

Members of the Tataryn family are working together to push for changes to a policy surrounding medically-assisted dying in Saskatchewan. Susan Tataryn says her mom, Alice, pictured here in an old family photo, lived life to the fullest until she was no longer able to because of her health. (Submitted by Susan Tataryn)

'Unconcsionable'

With the help of her brothers, Susan wrote a letter urging the Office of the Chief Coroner in Saskatchewan to change the policy.

"It is unconscionable that those who choose or would like to choose MAID in their final days must still grapple with the stigma that is associated with suicide," the family wrote.

My mother always said if you see something that is wrong and you think it should be changed, don't sit and wait for someone else to change it. - Susan Tataryn

Susan got her mom's blessing to pursue the change on Nov. 15, 2017. Alice died the same day knowing her death would be marked a suicide.

Although Alice wasn't concerned for herself, Susan said her mom was outraged on behalf of others for whom the designation could be a barrier to getting MAID.

Susan said it was also wrong that her mother's death should be recorded that way.

"It was inaccurate to designate it a suicide. What we have here is a person that has a terminal illness that is going to die and is choosing not to suffer and is choosing to not have their family suffer," said Susan.

"In my mother's case, this is not a woman who was not enjoying her life up until the point when she learned that she was ill, and in fact she continued to enjoy her life for as long as she could."

Sask. policy dictates categorization

Alice Tataryn is one of at least 65 people who have died with medical assistance since the federal legislation was changed to allow it in June, 2016.

Each of those people was assessed for eligibility using a series of federal criteria, including that they have a "grievous and irremediable medical condition" and that their natural death be "foreseeable."

Two independent physicians or nurse practitioners need to deem that the person is eligible before the procedure can take place.

Patients must also be more than 18 years old and be able to give informed consent immediately before the procedure.

In Saskatchewan, policy dictates that coroners who fill out the medical certificate of death mark the "manner of death" in MAID cases as being suicide.

MAID contacts, and completed cases, in the Saskatoon Health Region between May 2016 and June 2017. (Lilian Thorpe/MAiD Policy Continuous Quality Assurance Audit Summer 2017)

Policy under review

The Ministry of Justice said the policy is currently being reviewed to determine what regulatory or legislative changes are needed.

In a letter responding to the Tataryn family's complaint, the ministry said Deputy Chief Coroner Shelley Gibson has been discussing changes with the ministry's legal counsel.

"The Ministry of Justice and the Office of the Chief Coroner share your concerns and agree that changes need to be made to the process and the certification of death," reads the letter.

"Regrettably, there have been some delays in moving the necessary changes forward; however, I know that both the Chief Coroner and the Deputy Chief Coroner are committed to addressing these concerns."

The Ministry of Justice said in a statement those delays were the result of a "period of transition" at the Office of the Chief Coroner, and a decision on the role that the coroner's office should play in investigating MAID deaths. It said there is no timeline for when any changes will be made.

Deaths marked 'natural' in some provinces

Other provinces have already adapted their policies or chosen different ways to record the deaths within the existing framework.

In many provinces, the immediate cause of death would be recorded as "toxicity" — the drugs that were administered through MAID. The underlying condition, such as cancer, would also be recorded as a contributing factor under cause of death.

But it is the classification of MAID under "manner of death" that differs between provinces.

British Columbia and Manitoba classify the manner of death — which is separate to the cause of death — as "natural."

In Alberta, the deaths are listed as "unclassified." National guidelines prepared by Health Canada recommend the manner of death be recorded as "natural."

Although the manner of death in Saskatchewan is marked as being suicide, those deaths are noted as being medically assisted on the certificate.

A sample copy of the current medical certificate of death in Saskatchewan. In early 2018, this version will be replaced with a new document that includes a specific box for MAID deaths to be recorded. (Submitted)

Changes to Sask. death certificates

eHealth, which controls provincial health records in Saskatchewan, recently finalized a new medical certificate of death that includes a specific place for MAID deaths to be recorded.

The new forms, expected to be in use by early 2018, will streamline eHealth's record-keeping on MAID. But the change will not have any bearing on the way the manner of death is recorded.

Dr. Lilian Thorpe is a member of the medically-assisted dying team for the Saskatchewan Health Authority in Saskatoon, and a faculty member at the University of Saskatchewan's College of Medicine.

Thorpe, who also works in the health region's geriatric program, has done more than 80 assessments for people who have applied for a medically-assisted death.

Medical students sharing concerns from audit

Dr. Lilian Thorpe has also written to the province to push for the death certificate policy to be changed, arguing that medically-assisted deaths simply are not suicides. (Rosalie Woloski/CBC)

A group of four medical students recently conducted a health region audit of the MAID program, including interviews with families and patients. They also interviewed nurse practitioners, social workers and physicians.

Thorpe said the issue of the deaths being marked as suicides was one of the biggest concerns raised by families and patients during the audit.

"These were all patients who were having horrible deaths and they were people that told us that they never wanted to die, except their death was terrible and they were wanting control over how they die," said Thorpe.

"They wanted to not die a horrible choking death; they wanted to not have it drag out over weeks and weeks and weeks where every day was worse."

Thorpe, who has also been present for a number of medically-assisted deaths, said many of the interviewees found the suicide designation to be traumatic because they had strong faith beliefs.

Others said it was upsetting because the designation suggested their loved ones had wanted to die.

Although there were concerns people might lose coverage under life insurance due to the designation, problems in that area never eventuated.

Push for change

Thorpe has also written to the province to push for the policy to be changed, arguing that medically-assisted deaths simply are not suicides.

"Suicides, where a young person maybe with depression or maybe something bad had happened to them, had committed suicide — it's very traumatic for everyone. There's no planning for this; it's very awful. Somebody who had a lot of years to live left dies," said Thorpe.

"This is very different from someone who is dying a horrible progressive death and is in a lot of distress and is making a choice about how [they die]."

Daughter follows mom's leadership

Susan Tataryn wants the policy changed sooner rather than later.

She worries some people who wanted a medically-assisted death will suffer unnecessarily because the suicide designation goes against their beliefs.

Susan wants the death certificates, including her mother's, to be changed retroactively after the policy change takes place. She will consider taking the matter to court if it is not resolved.

"My mother always said if you see something that is wrong and you think it should be changed, don't sit and wait for someone else to change it — do it," said Susan.

"And so, with that leadership that she had given us for our lives, we knew that this was something that she wanted. So we started writing the letter; we showed her the letter. She was pleased."