Updated in 2023

On March 17, 2021, Bill C-7 received Royal Assent, a huge milestone for medical assistance in dying (MAID) and end-of-life rights in Canada. With the new law in place, the next step was the Parliamentary Review committed to in the Bill. The review included eligibility for MAID of mature minors, eligibility of those with a mental disorder as the sole underlying condition, advance requests for MAID, the state of palliative care, and the protection of people living with disabilities.

As part of our mission to educate and share knowledge, we examined each issue of the Parliamentary Review in a series of blog posts. We hope to give people across Canada insight into the reason for, and importance of each issue. We also hope you will be motivated to advocate for one or all of the issues by engaging your Member of Parliament.

In this blog post, we will discuss the state of palliative care.

Background

Bill C-14, which received Royal Assent in 2016, included a commitment to review the state of palliative care in Canada by a committee comprised of members of both Houses of Parliament. After the passage of Bill C-7, the Parliamentary Review of MAID was initiated to review several issues including palliative care.

In the 2021 federal budget, $29.8 million was committed to improve access to palliative care over six years.

DWDC position on the state of palliative care

DWDC fully supports continued federal investments into expanding access to and improving the quality of end-of-life care.

While DWDC was pleased to see that the 2021 federal budget earmarked $29.8 million over six years to improve access to palliative care, we agree with the Quality End-of-Life Care Coalition of Canada (QELCC)’s view that more funding is required to deliver proper awareness, access and delivery of palliative care.

DWDC supports and encourages the Committee to adopt the Quality End of Life Care Coalition (QELCC’s) three recommendations: 1) The establishment of the Office of Palliative Care (OPC) – a centralized and national coordination office that was suggested by the Framework on Palliative Care in Canada; 2) Invest $7 million over three years to develop the required infrastructure for national standards, common data sets, and a pan-Canadian Atlas for palliative care. New annual funding to create a Palliative Care Collaborative, comprised of federal, provincial, and territorial government representatives, key stakeholder groups, patient groups and caregivers, to implement the Framework on Palliative Care in Canada; and 3) The allocation of $8.75 million of new funding over three years for palliative and end-of-life research, including grief and bereavement.

DWDC also supports QELCC’s call for the federal government to ensure that any future palliative care funding includes a commitment to gather data and report back publicly (by December 2023) on the funds’ use and the outcomes achieved using such funding, as suggested by the Framework on Palliative Care in Canada.

Insight from an expert

Dr. Jyothi Jayaraman is a Palliative Care Physician who has been a MAID provider and assessor since 2016. Dr. Jayaraman is a Clinical Assistant Professor in the Department of Family Practice and an Associate Member, Department of Medicine, Division of Palliative Care at the University of British Columbia in Vancouver, B.C.

Her passion for her work is palpable, “My work in palliative care has been life transforming and the addition of medical assistance in dying has enriched it further. I am grateful to the patients and families who have allowed me to share this journey with them. I work in two hospices in Vancouver, both of which practice the epitome of patient-centered care. MAID assessments and provisions are allowed on site. The physicians are comfortable performing assessments if required and the team is extremely supportive of the patients’ needs to complete requests. I am also thankful to the wonderful palliative care and MAID colleagues I have the joy to work with.”

The federal government committed $29.8 million over six years to improve access to palliative care. Do you think this is enough? Where do you think it would be best spent?

The Federal budget allocation is specifically for improving access. I believe that ensuring equitable access starts with better data and better data starts with a more rigorous definition of palliative care.

Palliative care has been with us for over 40 years, but we are still in the dark about who gets what and how much. My palliative care colleagues have expressed disappointment that the anticipated improvement in palliative care services when MAID became legal has not materialized. I understand that such things do not flow automatically. The 2021 Federal budget has committed to allocating $29.8 million for improving access to palliative care – but how will we know if things have improved when we don’t know how they are right now?

A significant (and more recent) problem may be that the patient population considered to benefit from palliative care has broadened to include people with more chronic illnesses who are not in the last 6-12 months of life.

An updated version of the WHO’s definition of palliative care includes, “the recipient’s illness is no longer required to be deemed incurable. Palliative care is now described as an approach applying to “life-threatening illness,” and “applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life.”

I understand the good intentions behind this expansion, but it does a disservice to the discipline by muddying the waters further. The large bulk of disease burden in humans today consists of chronic illness and in the earlier part of their disease, the best management may be through their family physicians and specialists (nephrologists, respirologists, cardiologists, neurologists etc.). We palliative care providers are very aware of the kind of population that requires our services the most, and these largely (if not exclusively) occur closer to the last 6 months or so of life. There is a delay in recognition of the transition to this state and that is why palliative interventions are started too late. To start we need a conversation on a more appropriate definition of palliative care in the interests of improving access.

Should people need to decide between MAID and palliative care? Are they mutually exclusive or should people have access to both?

As a palliative care physician my involvement in MAID has enriched my practice. There is a unique intimacy that develops with the patient who is trusting you with the responsibility of taking their life. I can confidently say that I am most comfortable when the patients have received the best possible palliative care. I think every person across Canada has a right to expert palliative care in the setting of their choice, and they cannot be denied access to palliative care because they have decided to pursue MAID. I mention this only because there are still government funded end-of-life care institutions in Canada where MAID is not allowed. There are also palliative care settings where otherwise independent practitioners are not allowed to act according to their conscience because of pressure from their colleagues.

There is a pervasive, though unfounded belief among some palliative care practitioners that ‘mixing palliative care with MAID’ will deter patients from seeking palliative care. Talk of ‘patients having a right to palliative care in a MAID-free space’ seems to suggest that there is a fear of a MAID contagion. It is unclear to me whether it is, in fact, the practitioners rather than the patients who want a “MAID-free” space. Unfortunately, the people who express these opinions have distanced themselves from the entire MAID process and so it is hard to know how they have formed these opinions. I am optimistic that more palliative care practitioners will avail of opportunities to educate themselves and listen to the voices of the people they are meant to serve.

Over these 5 years I have seen the evolution of understanding and acceptance of MAID from my palliative care colleagues. I expected nothing less from the practitioners of a discipline which has led the way in keeping the whole person at the centre of all care. There are some faith-based institutions in Vancouver which do not allow MAID provisions but do allow assessments now (though not in the early years after legalization). I have personal knowledge that there are some health care providers in these facilities who experience extreme moral distress at forced transfers of extremely frail and vulnerable people for MAID provision. I am hopeful that in time, the authorities who decide these matters will recognize the inhumanity of such actions.

Advocate for improvements and better access to palliative care

Do you want to help protect the constitutional right to medical assistance in dying? We have created an Advocacy Toolkit and Action Guide that provides you with the resources you need to effectively engage your Member of Parliament.