40% of patients died before completing MAID

About 40 per cent of patients who requested a medically assisted death in Nova Scotia during the first 30 months that it was legally available died without completing the process.

The factors associated with dying a natural death versus a medically assisted death are largely unexplored. A resident physician in palliative care aimed to close that gap through a study funded by the Nova Scotia Health Authority Research Fund.

“Many patients who request medical assistance in dying don't actually end up getting (that) for a variety of reasons,” said Dr. Caitlin Lees, the lead author of the study in an interview.

“We found that patients who were seen by palliative care, patients that had comorbidities, and patients that lived with somebody else had decreased odds of having a medically assisted death.”

The study analyzed the experience of all patients in Nova Scotia who requested medical assistance in dying (MAID) between June 17, 2016 and Dec. 31, 2018.

All patients included in the study were 18 or older when they requested MAID and were deceased at the time of analysis. A total of 402 patients made requests during the specified period with 383 of those being deceased and consequently included in the study.

The researchers obtained data about the patients through the Nova Scotia Health Authority MAID Care Coordination Office, which maintains a provincial registry of all MAID requests.

ACCESS TO CARE NOT SIGNIFICANT FACTOR

One of the factors the study looked at is whether patients had a primary care provider, such as a family physician.

“We had wondered in Nova Scotia, where there have been such issues with access to family doctors, if that might be a driver or a barrier of

having medically assisted death,” she said.

But that wasn’t the case. The study found that both patients who died by MAID and those who died of other reasons had a primary care provider in most cases. This suggests that lack of primary care was neither a driver nor a barrier.

Lees also looked at whether patients lived in urban or rural areas, but that also didn’t appear to significantly affect whether people who request MAID die a medically assisted death or a natural death.

“There may be issues with access (to MAID), but the access is equitable across the province,” said Lees.

“So, if you live in Yarmouth, you’re no more likely to not get a medically assisted death, if you want one, than you would be if you lived in Halifax.”

A LENGTHY PROCESS

The process for getting MAID involves submitting a formal request, getting two assessments by two different doctors, and going through a 10-day reflection period so the patient ensures they’re making the right decision. They would also need to give consent right before receiving MAID.

Lees and her colleagues found patients who went through with the process were on average less comorbid than those who died a natural death.

“We do wonder if patients that are sicker are more likely to be referred to palliative care and have a natural death simply because they’re unable to survive the assessment process,” said Lees.

A quarter of the patients who didn’t die a medically assisted death lost capacity or were deceased before the assessment process could be completed.

“It’s a lengthy process,” said Lees. “I think sometimes patients don’t necessarily understand that and by the time they request medical assistance in dying, they might be so unwell that they’re not really able to go through that process.”

As a palliative care resident physician, Lees met with many patients who are unaware of how long the process takes.

“For many patients, medical assistance in dying isn’t necessarily a treatment of last resort, it’s actually their preferred mode of death,” she said.

“I think we need to try to have those conversations earlier with patients about how they would like to see their end-of-life process unfold because we want those referrals to happen earlier rather than later.”

PALLIATIVE CARE PROVIDES SUPPORT

The researchers hypothesized that patients who meet with a palliative care specialist are more likely to die by MAID because they have those conversations, but the study results indicate the opposite.

Lees said the study doesn’t explain why people who receive palliative care are less likely to die by MAID. It could be due to the additional training and expertise that specialists have in managing symptoms.

“Somebody who might have severe pain from their cancer, if they’re seen by us, we might be able to get that under control and they may decide that they’re comfortable enough that they would prefer to have a natural death.”

Whether a patient prefers MAID or dying a natural death, Lees assured Nova Scotians that a palliative care specialist would provide them with the support they need to ensure their last days of life are the highest quality possible.

“They should never hesitate to bring up questions or interest in MAID because we’re happy to talk to them about that,” said Lees. “Open dialogue about end-of-life is really important.”