A decade of poor progress on palliative care

In the last 10 years, we haven’t made substantial progress improving access to palliative care for Canadians; we wouldn’t tolerate that in other areas of medicine

December 12, 2019

By Dr. Darren Cargill

Dr. Darren Cargill

Dr. Darren Cargill

On Nov. 11, Health Quality Ontario released its 2019 update for palliative care in the province of Ontario. This update follows its initial report in 2016 and builds on the 2017 report “Measuring Up.” Although I have a vested and professional interest in this report, given that I work in the field of palliative medicine, I can’t disguise the fact that I have a personal interest in the matter as well. I also don’t believe it was a coincidence that it was released on Remembrance Day. This is a day to remember the sacrifice of our noble Canadian soldiers but more importantly, it is a day to reflect on the past as we look to the future.

What does Sherlock Holmes say about coincidence? “The universe is rarely so lazy.”

In 2015, I was asked to see a patient named Kyra. At that time, she was a 23 year old diagnosed with ovarian cancer. Her story was chronicled in the Windsor Star and on Facebook. Along with her mother Brenda, she was highlighted in the aforementioned HQO report “Measuring Up” in 2017, the year she died.

Kyra was referred to our program by her oncologist to help with managing pain and symptoms related to her ovarian cancer. A frequent flyer in the emergency department, I am proud to say that once she was followed by our program in Windsor, Kyra visited Disney World more often than she visited the ER.

When Kyra died in August 2017, she left behind a list. This was a list of things left undone. Kyra faced death with a grace and maturity beyond her 25 years. One of those items was a plea to improve access to palliative care for all Ontarians.

Nearly half of people who receive palliative care only receive it in their final month of life.

The update from HQO is a mixed bag of success and failure. While the report highlights some gains in areas such as lower hospital deaths and ER visits, there is still reason to be discouraged. Access to community-based palliative care has essentially flat-lined (no pun intended). Unlike Kyra, only one in five Ontarians receive a home visits in their last year of life from a physician. Access to palliative care remains a “postal code lottery” with lower socioeconomic areas having poorer access. Despite repeated and ongoing platitudes towards shifting care to the community, medical care in general remains hospital-centric. ICES reported that the vast majority of palliative care only occurs in hospital despite overwhelming evidence of the benefits of community-based palliative care teams like ours in Windsor. Even the Ontario Hospital Association (OHA) recognized the need to shift resources to the community in its 2019 pre-budget submission to the Ontario government. In 2019, the OMA submitted a pre-budget submission that highlighted three key areas: mental health, physician burnout and access to palliative care.

Yet here we are.

Recall that former Canadian senator Sharon Carstairs highlighted in her report “Raising the Bar” that access to palliative care in Canada was poor in 2010. As such, nearly a decade has gone by with minimal—or at best, incremental—improvement in access to palliative care in Ontario.

I believe it is no coincidence that from 2014-2017, Ontario doctors and government fought a particularly nasty and public battle over a physician services agreement. Thankfully, an arbitrated settlement by William Kaplan in February 2019 has put the government and Ontario’s doctor on a path towards reconciliation.

Kyra Roberts

Kyra Roberts

From a Canadian standpoint, the Federal Government released its framework document in 2018. This documents states that only 15% of Canadians have access to community-based palliative care services despite research showing that most Canadian would prefer to receive this care in the home or a home-like setting like a hospice. They followed up this an Action Plan in 2019 that I addressed in a previous Medical Post article that I feel falls short of the mark.

At some point, Canadians and Ontarians alike will find the voice to speak up and say “enough.” In no other area of medicine would we tolerate such gaps in care, paucity to access and neglect.

The patients, like Kyra, have died and their families, like Brenda, Terri and Tiffany are focused on grieving their loss, and rightly so. As such, palliative care patients are a vulnerable and neglected patient population.

This report from HQO highlights troublesome and persistent gaps in access to palliative care:

“Nearly half of people who receive palliative care only receive it in their final month of life.”

“HQO’s quality standard for palliative care states that people with a progressive, life-limiting illness should have their palliative care needs identified early through a comprehensive and holistic assessment, and that palliative care can begin as early as the time of diagnosis.”

“Following a period of modest but steady improvement, there has been little change over recent years in the proportions of people who receive publicly funded palliative-specific or any home care in their last month of life.”

“More than half of people have an unplanned visit to the emergency department in their final month of life.”

“The majority of people who die in Ontario die in hospital, though research indicates most people would prefer to die at home.”

Kyra’s case was never easy. To this day, I consider it one of the most challenging of my career. But unlike most of Canada, Kyra had access to high-quality palliative care. One of her dying wishes was that others like her would have the same. The question is: how much longer are we going to wait before we make real and substantial improvements in quality of and access to palliative care in Ontario?

I’m sure Kyra would like to know.

Dr. Darren Cargill is the medical director for the Hospice of Windsor and Essex County, a former member of the OPCN clinical advisory council and the Ontario Medical Association negotiations committee. He was formerly the chair for the section of palliative medicine at the OMA and the regional lead of Cancer Care Ontario.

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