Palliative pixie dust

Over the Easter weekend last year, I had the pleasure of taking my son to Orlando. It came as a complete surprise to a 9-year-old who woke up one Thursday morning expecting to go to school. It was a fabulous weekend. We managed to hit all four Disney parks and even squeeze in a day at Universal Studios (we visited two of its three parks in one day, which I DO NOT recommend).

We spent our first day at Epcot. Inspired by the Experimental Prototype Community of Tomorrow concept developed by Walt Disney, the park opened on Oct. 1, 1982, as EPCOT Center, and was the second of four theme parks built at Walt Disney World, after the Magic Kingdom.

It’s fun to look around Epcot and see what we thought the future might look like 50 years ago. Which, in a roundabout way, brings me to palliative care in Ontario.

At various times during the pandemic, health care in Ontario has been forced to focus on health-system recovery. The pandemic has stretched our systems to the point of breaking. It taught us hard lessons about hospital capacity, public health and the state of seniors’ care in Ontario. I participated in many Zoom calls focusing on the role palliative care could play in active management of the pandemic as well as health-system recovery.

It was during one of these calls that I heard something from Chris Simpson, Ontario Health’s Executive Vice-President, Medical, that gave me pause.

“It’s time to bring palliative care in Ontario into the 21st century,” he said.

And he’s right.

As I sat in Oga’s Cantina, sipping on a Fuzzy Tauntaun at 8:30 in the morning, I reflected on that comment. By now, you should all know palliative care’s history. The modern hospice palliative care movement began in the 1960s in England with the creation of St. Christopher’s Hospice by Dame Cicely Saunders. In Canada, it can be marked by the creation of one of our first palliative care units in Montreal by Balfour Mount in 1975. Palliative medicine was recognized in Canada as a Royal College subspecialty in 2017 (trailing the United Kingdom and the U.S.A., which recognized it in 1987 and 2006, respectively).

But access to palliative care in Canada remains a challenge.

This is not to say that work has not been done. As a result of the 2020 Compassionate Care Act, the Ontario government released its Provincial Framework for Palliative Care in December 2021.  This framework is intended to support Ontario health teams as they work to deliver high-quality palliative care while collaborating with their partners to support Ontarians in all care settings. It will guide future work to ensure that every Ontarian who needs palliative care – whether in their own residence, hospital, a long-term care home, a retirement home or in another community setting – has better access to high quality services, including in the final stages of life.

New hospices have been built across the province and funding has been expanded to meet increased demand. One project that I am particularly looking forward to is the Neshama hospice in North York that had to overcome NIMBYism on its way to being built.

While a lot has been done, there is work that remains.

During our trip to the Magic Kingdom, I arrived at the gates to Tomorrowland. Another vision of what the future might hold. As a ride, Space Mountain still stands the test of time, much like the principles and values of palliative care. But when Space Mountain is compared to many of the new 4D rides such as Rise of the Resistance or Remy’s Ratatouille, it is clear that much has changed in 50 years. The new Tron: Light Cycle ride next door to Space Mountain puts an exclamation point on that juxtaposition.

Just as Disney World has grown and evolved, so must palliative care.

Just as Disney World has grown and evolved, so must palliative care.

Part of bringing palliative care into the future requires removing direct barriers to access. This is why I was pleased to see that elements of the 2021 Physician Services Agreement (PSA) could be leveraged to remove some of the barriers present in the OHIP Schedule of Benefits and other funding mechanisms such as Alternate Funding Plans (AFPs), Community Palliative On-Call (CPOC) and Hospital On-Call Coverage (HOCC).

Back in August 2020, I had the pleasure of being a guest on a call between the Ontario Medical Association Section of Palliative Medicine and the Ontario Medical Association Negotiations Task Force (OMA NTF). Joining the call was Brenda Roberts and Anthony Dale. You may recall the story of Kyra Roberts, Brenda’s daughter, and John Dale, Anthony’s father. The purpose of this call was to inform the upcoming negotiations between the OMA and Ontario Ministry of Health (MOH) about palliative care in Ontario.

Their presentation was raw and emotional. It was also necessary.

To the best of my knowledge, it is the only time families and/or caregivers have been directly involved in these types of negotiations. Hopefully it will not be the last time. (Hint: negotiations begin again this fall between the OMA and Ministry of Health.)

I am grateful to the OMA NTF and MOH Negotiations Committee for making access to palliative care a priority. While the funding in the 2021 PSA did not fix every barrier to accessing palliative care, it goes a long way toward fixing many of the issues associated with physician funding and structures.

The Framework for Palliative Care in Ontario requires a report to be tabled at Queen’s Park in December 2024.

Currently, the Ontario Palliative Care Network (OPCN) is collaborating with Ontario Health regions and the Ministry of Health to implement the model of care for adults in community settings, which includes long-term care homes, that was completed in 2019.

At the same time, the OPCN is working on models of care to address palliative care in hospitals and for our pediatric population to complement the adult model of care. Once completed, these models of care will constitute a Health Services Delivery Framework (HSDF) that will provide a blueprint for the province.

Five days in Orlando can be downright exhausting. But flying back, I’d never felt more energized. Maybe it was the Dole Whip speaking or a slight case of sunstroke, but for the first time in a long time, I feel that more patients will begin to receive the care that Kyra did, and fewer patients will fall into the cracks like John did.

Kyra was a big fan of Disney World, and one cannot ignore the serendipity of these developments.

It has been over 10 years since the Declaration of Partnership was signed by 80+ stakeholders in December 2011.

The vision was that “Adults and children with progressive life-limiting illness, their families and their caregivers will receive the holistic, proactive, timely and continuous care and support they need, through the entire spectrum of care both preceding and following death, to help them live as they choose, and optimize their quality of life, comfort, dignity and security.”

That “All Ontarians should have equitable access to high quality care and support to optimize their ability to live well with a progressive life-limiting illness wherever they reside or receive care.”

Perhaps Ontario is ready to update palliative care for the 21st century.