Palliative care funding consultation process raises concerns

Susan Thompson
South Peace News

Friends of Medicare is concerned that putting Peace River MLA Dan Williams in charge of consultations on where to spend new funding for palliative care may lead to a biased process.

The not-for-profit organization has previously called on the provincial government to create legislation to ensure equal access to Medical Assistance in Dying [MAID] at all facilities in Alberta, including faith-based facilities.

“We’re actually kind of surprised by the choice of the Minister of Health to put this particular MLA in charge of public consultation and actually deciding where the $14 million for palliative care will be allocated,” says executive director Sandra Azocar.

Williams was the author of controversial “conscience rights” legislation that would have allowed healthcare providers to choose not to refer patients on to services they conscientiously objected to, such as abortion or MAID. A standing committee on private member’s bills decided not to recommend the legislation for second reading after a large public outcry.

“We don’t believe that given his actions – and specifically his attempt to put through a legislation that would have seen services such as MAID and other health services being compromised by what he was asking that this legislation cover – we don’t think that he inspires trust or that he will be capable of ensuring that end of life care will be expanded and improved so that Albertans have access to all aspects of end of life care,” Azocar says.

MAID has been legal in Canada since 2016. The most common health conditions of Albertans choosing to access medical assistance in ending their lives are cancer, multiple sclerosis, ALS and advanced lung disease. On average they are in their early 70s.

Demand for MAID has increased each year, with 206 Albertans choosing doctor-assisted death in 2017, up to 307 in 2018 and 377 in 2019.

However, advocates like Friends of Medicare say faith-based facilities still reduce access to the service.

Covenant Health, which has already received $5 million as part of the funding announcement that also saw Williams officially named as head of the funding consultations, is a Catholic organization and therefore won’t provide the service in its facilities as a matter of policy due to its morals and ethics.

Azocar says that out of the 377 Albertans who received medical assistance in dying in 2019, 125 of them had to be transferred from faith-based or non-participating sites.

She says although Covenant Health changed its policy to allow assessments to occur after public outcry in 2018, the numbers show people are still not always able to access MAID as part of their choice in end of life.

“I think our hope is that as professionals they will always do that,” says Azocar. “But there is a difference when it comes to the actual actions and the actual numbers that are coming out, when it comes to those people that are able to access perfectly legal services within those faith based facilities. And unfortunately in rural Alberta that’s all that they have.”

According to the provincial government’s most recent budget, the new funding will be used by Covenant Health “to increase education for health care providers, access to, and awareness of palliative and end-of-life care to better support Albertans and their caregivers and families in accessing appropriate and timely end-of-life care.”

Friends of Medicare has concerns whether that information will be complete.

“Basically their role is to provide value-based information, and when you need to make healthcare decisions it has to be more than just that. You have to be able to be provided with all the information, with all the services that are available as options, and you can’t be choosing and picking which services you decide to talk up or not,” Azocar says.

Bioethicist and palliative care physician at the University of Alberta, Cheryl Mack, says faith-based organizations are a key part of palliative care in Alberta.

“[We] need to acknowledge the longstanding history of faith-based organizations in the provision of care to the sick and suffering. Historically, Christians have considered care for the dying a special duty. The modern hospice movement within the western tradition as well can be traced back to the Catholic medical/nursing traditions,” Mack says.

“Within Alberta, Covenant provides a significant proportion of the hospice care. The staff and organization do an excellent job in providing palliative care. The funding for Covenant in-and-of-itself is not a concern.”

“The question should be how the other funds are going to be utilized,” Mack says.

Mack says there is a gap in Alberta due to a lack of pediatric hospice or respite beds. Covenant Health does not provide pediatric palliative care, and the only pediatric hospice is the province is in Calgary. She says there are significant costs associated with home-based palliative care.

“This is important to discuss, because many parents take on the caregiver role in these situations and must take time off work or, in more long-term palliative care scenarios [months to years], may choose not to work in order to care for their child in their home.”

Mack says while the funding announcement made by the government includes addressing the costs associated with medication copay through the Alberta Palliative Coverage program [Alberta Blue Cross Palliative Drug Coverage Plan], there are other significant costs beyond drug copay. While some support can be accessed through charitable and non-profit organizations, that support is not predictable.

“Families may need special equipment such as a hospital bed, modified wheelchairs and lifts to enable them to care for their child in the home. Consumable items such as urinary catheters may also need to be paid for out of pocket by the family,” Mack says.

She says in pediatrics, children with complex needs may require oral solutions of medications that are not commercially produced in that formulation, and there may be a cost of $1-5 for each dose of the medication on top of the compounding fees.

Mack says children and their families should have the option of receiving end of life care at home without taking on financial hardship.

“This option needs to be available to all children and families, regardless of their socio-economic status.”

Mack also says the new funding is not enough.

“I am always happy when palliative gets some funding, but the one-time injection of funds on their own does not build a sustainable palliative care program. One-time funding may help a particular project get off the ground, but for that to continue what we need is stable and predictable funding,” Mack says.

Azocar says palliative care is an area of healthcare that has long been under-resourced.

“This is an area that has been underfunded for so long, and now that we finally see some ability to move forward with improving palliative care, we have actually put the fox in charge of the henhouse. [He] will be deciding which hen gets fed and which one doesn’t,” she says.

“So it’s not a very good choice. We’re actually very concerned.”

Mack says Bill 207 was an ill-conceived bill.

“When dealing with a complex and nuanced concept such as conscience rights and professional moral obligations to our patients, broad stakeholder input is required. The very real risk of harm to patients makes this requirement an absolute necessity. It was crafted without this.”

However, she still believes it is unfair to speculate on how the new consultation process may affect palliative care going forward.

“We should give MLA Williams a chance to mature into this new role. I would hope that in developing their vision they utilize the Palliative and End of Life Care Alberta Provincial Framework to guide them. It is an excellent and comprehensive document prepared by AHS [Alberta Health Services] and major stakeholders. I would hope for more stakeholder consultation.”

“Given the gaps in pediatric palliative care identified within the framework document, and the challenges I highlighted previously, the need to engage directly with specialist, primary care, and community pediatric palliative care providers is critical.”

Friends of Medicare is more cynical.

“We know any findings MLA Williams will have will most likely be whatever direction this government wants to take palliative care,” Azocar says.

“The fact that Premier Jason Kenney is a devout Catholic, the fact that this man put through this conscientious rights bill which was an unnecessary bill because they already have those conscience rights protected, and then to give all the money to Covenant Health, just basically shows that this whole idea or allocation of funds is totally by design.

“Surveys have been done over and over again where Albertans actually indicate very favourably that if any kind of service is publicly funded that they should be in a position to provide every single service that’s available out there.

“So I think this conversation is going to be open again, and we will be at the forefront of bringing attention to it.”

Requests for comment on this story sent to both Williams and Minister of Health Tyler Shandro were not answered.