The state of palliative care: A deep dive into the issues of the Parliamentary Review
News & Updates | September 8, 2021 | Dying With Dignity Canada
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 is the Parliamentary Review committed to in the Bill. The review includes eligibility for MAID of mature minors and those with a mental illness, advance requests for MAID, the state of palliative care and the protection of Canadians living with disabilities.
As part of our mission to educate and share knowledge, we are examining each issue of the Parliamentary Review in a series of blog posts. We hope to give Canadians 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 the coming months.
In this blog post, we will discuss the state of palliative care.
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
We are pleased to see the federal commitment of $29.8 million over six years to improve access to palliative care in Budget 2021.
We continue to support the recommendations proposed by the Canadian Hospice Palliative Care Association (CHPCA) in its pre-budget submission, one of which proposes targeting funding at the Framework on Palliative Care in Canada. Specifically, we agree with the CHPCA that all priorities of the Framework should be funded. They are:
- Palliative care education and training for health care providers and caregivers
- Measures to support palliative care providers and caregivers
- Research and the collection of data on palliative care
- Measures to facilitate equitable access to palliative care across Canada, with a focus on underserved populations.
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 or 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 Canadian 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
Are the issues related to the Parliamentary Review, including improvements to palliative care in Canada, important to you?
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. Your advocacy will help keep the Parliamentary Review of MAID top of mind.