Delays block access to medically assisted dying for some Sask. patients

A Saskatchewan doctor says systematic changes are coming to address delays that have stopped some seriously ill patients from getting medical assistance to die.

Dr. Lilian Thorpe, a member of the medical assistance in dying (MAID) team in Saskatoon, said it can take a long time for people to get approval for the procedure.

"So by the time they get connected up with an actual person who might be able to do this for them, they might have lost capacity," said Dr. Thorpe, who is also a geriatric psychiatrist and professor at the University of Saskatchewan.

"And that can be really traumatic for someone who has decided that they really want to have this."

She said reasons for the delays include patients not knowing who to contact about registering for MAID and physicians not having the knowledge to help them proceed quickly.

Dr. Thorpe said that in some cases the person can lose the mental capacity — sometimes due to heavy medication — to give the approval that's legally required for doctors to go ahead with the procedure.

Had they had enough training they would have called in the co-ordinator the moment Gordon said 'I want assisted dying.'- Georgina Miller, relative of Gordon Campbell

She said the difference between a sick person being able to give approval and not can be a matter of hours.

"We've had a few cases where a person has lost capacity, right near the end, family all there, supporting their family member and they can no longer have this because [they lose capacity] right before they have to say again — 'yes I want this' — and really be with it," said Dr. Thorpe.

Less than half of people in the Saskatoon area who request MAID actually go through with the process. Dr. Thorpe said patients sometimes find there are alternatives or they die naturally without deciding to pursue a medically assisted death. 

A spokesperson for the provincial Ministry of Health said in a statement that, "The Ministry has not received inquiries or correspondence from the public about delays that have stopped some patients from accessing the service before they lost capacity to give consent."

Medical assistance in dying was not legal in Canada until federal legislation was changed to allow it in June 2016. At least 132 people have since had the procedure in Saskatchewan.

Process too slow for Moose Jaw man, says relative

Moose Jaw woman Georgina Miller said her 92-year-old cousin Gordon Campbell, whom she cared for, is one of those who could not access MAID because of delays.

She said Campbell did not wish to wait for a natural death from bladder cancer and that she was his "mouth" and his "ears" to navigate the process.

Miller said there were delays because hospital and nursing home staff did not have enough information about how to deal with MAID.

"It was just, excuse the expression, it was a gong show — back and forth, in between," said Miller.

She said that by the time the process was underway, Campbell was not considered eligible for MAID and he was denied.

Finally she managed to reach Dr. Thorpe, who she said was able to provide more information and support.

But Campbell died of natural causes on March 1, 2018, before he had an opportunity to meet with the MAID team from Saskatoon.

Speaking out for change

"Had they had enough training they would have called in the co-ordinator the moment Gordon said 'I want assisted dying,'" she said of the medical staff she first spoke to about assisted dying.

Miller said she is not angry with the health workers.

"I kind of blame myself a little bit because I didn't look into it but I'm trusting the hospital. But the hospital didn't really know itself, because it is new."

She is speaking out about Campbell's experience because she wants others to be able to access MAID if that is their decision. 

Process is improving, says doctor

Dr. Thorpe said changes are coming to address some of the issues that have caused delays.

Healtlhline, a 24/7 provincial health resource that provides professional health advice and mental health support, will soon become the main source of information about MAID deaths and the link to having an assessment.

The Ministry of Health's statement said that starting Oct. 29 HealthLine, accessed by dialling 811, will become, "a central access point for medical assistance in dying inquiries and information for both patients and practitioners. 811 will handle general inquiries from the public or practitioners about Medical Assistance in Dying within the health authority."

Anyone requiring more information than HealthLine can provide would be referred to the Saskatchewan Health Authority, the statement said. The information will also be available on the authority's website.

"[They can] at least go through the process of talking through all the possibilities that they might have access to, and those aren't always MAID," said Dr. Thorpe.

"My colleagues and I often feel that really talking through an end-of-life process is what we would like, not just automatically going to MAID."

To qualify for MAID, the patient must have a "grievous and irremediable" condition. Although their natural death must be "reasonably foreseeable," they do not necessarily need a diagnosis of a terminal illness such as cancer. 

Dr. Thorpe said efforts are underway to standardize the MAID process, and to make two nurses available — one in northern Saskatchewan and one in the south — to lead the MAID program in regions with fewer resources dedicated to it. 

She said physicians are also becoming increasingly knowledgeable about the process, and the number of medical students learning about MAID is rising rapidly.