Evidence of meeting #20 for Medical Assistance in Dying in the 44th Parliament, 1st Session. (The original version is on Parliament’s site, as are the minutes.) The winning word was research.
A video is available from Parliament.
The Joint Chair Hon. Yonah Martin (Senator, British Columbia, C)
Good evening, colleagues, and thank you, everyone.
My name is Yonah Martin, and I'm the Senate joint chair of this committee. I'm joined by the Honourable Marc Garneau, the House of Commons joint chair.
Before we begin, we have a vacancy in the vice-chair position, so the clerk will now preside over the election of a new vice-chair.
The Joint Clerk of the Committee Mr. Wassim Bouanani
Pursuant to Standing Order 106(2), the first vice-chair must be a member of the official opposition.
I am now prepared to receive motions for the first vice-chair.
Mrs. Vien, you have the floor.
Conservative
Dominique Vien Conservative Bellechasse—Les Etchemins—Lévis, QC
I move that my colleague Mr. Michael Cooper be elected vice-chair.
The Joint Clerk Mr. Wassim Bouanani
It has been moved by Madame Vien that Mr. Cooper be elected as first vice-chair of the committee.
Are there any further motions?
Is it the pleasure of the committee to adopt the motion?
(Motion agreed to)
The Joint Chair Hon. Yonah Martin
Today we are continuing our examination of the statutory review of the provisions of the Criminal Code relating to medical assistance in dying and their application.
I'd like to remind members and witnesses to keep their microphones muted unless they are recognized by name by one of the joint chairs. Also, all comments should be addressed through the joint chairs. When speaking, please speak slowly and clearly. Interpretation in this video conference will work as in an in-person committee meeting. You have the choice at the bottom of your screen of floor, English or French.
With that, I'll welcome our witnesses for this evening's first panel.
Representing the Canadian Society of Palliative Care Physicians, we have Dr. Romayne Gallagher, clinical professor of palliative medicine, University of British Columbia, via video conference. From the Canadian Cancer Society, we have Kelly Masotti, vice-president of advocacy, via video conference, and Daniel Nowoselski, advocacy manager, hospice palliative care, also by video conference. Lastly, on behalf of The Dorothy Ley Hospice, we have Donna Cansfield, chair of the board of directors, by video conference, and Dipti Purbhoo, executive director, also by video conference.
Thank you all for joining us this evening and taking the time to help us in this important study. We're very tight for time this evening, so we will be quite strict with our timing. We'll try to give you a one-minute warning. Please keep your remarks to five minutes.
We'll begin with Dr. Gallagher, followed by Ms. Masotti and Ms. Purbhoo.
Dr. Gallagher, you have five minutes.
Dr. Romayne Gallagher Clinical Professor, Palliative Medicine, University of British Columbia, Canadian Society of Palliative Care Physicians
Thank you, Madam Chair.
Thank you for allowing me to speak on behalf of the Canadian Society of Palliative Care Physicians. I'm here to clarify previous testimony about the state of palliative care in Canada.
There has been a struggle to define palliative care. The World Health Organization defines palliative care as follows:
[It is] an approach that improves the quality of life of patients...and their families who are facing problems associated with life-threatening illness. It prevents and relieves suffering through the early identification, correct assessment and treatment of pain and...physical, psychosocial or spiritual [problems].
Addressing suffering involves taking care of issues beyond physical symptoms.... It offers a support system to help patients live as actively as possible until death.
Palliative care is explicitly recognized under the human right to health.
We should provide palliative care in response to needs, not according to prognosis and not just in the last weeks of life. Health Canada reports on MAID fail to indicate quality or quantity of palliative care received, but they show that palliative care is often provided late in the illness, with 21% receiving it in the last two weeks and 18% receiving it less than four weeks prior to MAID.
Research shows that late involvement in palliative care leads to suboptimal pain and symptom management, increased suffering, failure to discuss and adhere to advance care planning, and unplanned hospital deaths. An Ontario study of people dying of cancer who received palliative care for greater than six months before death, compared with those who had less, showed a lower chance of needing hospital care and dying in hospital and an increased chance of receiving care at home in the last month of life. CIHI data and other Canadian studies reveal that those who do not have cancer receive less palliative care and receive it later in their illness.
Palliative care needs national standards for provision across health care sectors to be embedded in accreditation processes that organizations must pass to receive health care funding. We must develop indicators that are proxy measures with respect to quality of life and not just place of death and when palliative care was accessed. We also need patient-related outcomes whereby we track symptoms and distress during serious illness. This will take some dedicated funding for several years to achieve, but then we would have accurate data to assess our care of those who have life-limiting illnesses.
Some state that most people seeking MAID do so because of existential suffering. This argument attempts to neutralize the potential influence of palliative care in mitigating suffering, and it reassures lawmakers that MAID is the only option for existential suffering and that there's no need to improve palliative care provisions, yet Health Canada reports existential suffering at 3%. It appears that MAID proponents characterize the loss of ability to engage in meaningful activities—listed as 86% of MAID patients—as existential suffering. If this all seems confusing, that is because it is nearly impossible to separate one kind of suffering from another. We cannot dump a bag of suffering into the top of something like a coin-sorting machine and have it sorted out into different denominations such as physical, psychological, social and existential.
It is important that you understand that the division between these different sources of suffering is artificial since all these fears are connected. For example, think of a person living with inadequately managed pain who has limited her mobility, heightened her dependency on her partner, causing her to feel like a burden, and undermined her sense of agency and sense of self. This is typical of the nature of existential distress seen in patients with life-limiting conditions. Controlling her pain gives her back her mobility and independence, and other practical and emotional support returns her sense of agency and reduces the feeling of being a burden. In other words, providing quality palliative care is very effective in alleviating existential distress, as are some psychological interventions specifically designed for patients with persistent suffering. There are decades of research and clinical practice behind this.
Palliative care is optimally delivered in teams because it takes a team to meet all the needs of a patient and their family. Team-based care has strong evidence showing improvement in symptoms and quality of life, less caregiver distress, reduction in ICU and hospital stays and reduced health care costs.
Canadians will suffer with life-limiting illnesses whether they access MAID or die naturally. They are counting on you to ensure quality, timely palliative care for all Canadians.
Thank you.
The Joint Chair Hon. Yonah Martin
Thank you very much, Dr. Gallagher.
Next we'll have Ms. Masotti for five minutes.
Kelly Masotti Vice-President, Advocacy, Canadian Cancer Society
Good evening.
Thank you, Chair and committee members, for having us here today. My name is Kelly Masotti and I'm the vice-president of advocacy, and with me today is Daniel Nowoselski, advocacy manager, hospice palliative care.
Before I begin my remarks, I would like to acknowledge that I am speaking to you today from the traditional unceded territory of the Anishinabe Algonquin people.
The Canadian Cancer Society is committed to supporting people with cancer and their caregivers by ensuring they have the information they need to make decisions about palliative care, advance care planning and end-of-life care, including medical assistance in dying. Since 2020, our helpline has responded to more than 300 inquiries specifically about palliative care, more than 200 about grief and bereavement and 40 related to medical assistance in dying.
Everyone with a life-limiting illness deserves care that provides comfort, dignity and choice. Palliative care isn't just for those in the last days or weeks of life. It doesn't mean death will come faster or that anyone has given up. In fact, research shows palliative care can help people live longer by focusing on care that helps maintain quality of life, relieve symptoms and provide support in the setting of their choice. For some, palliative care lets them step out of the role of caregiver and allows them to simply be a daughter, husband, sister or loved one. For others, it can be comforting to know their loved one is getting care to help reduce pain and minimize symptoms. For many, palliative care helps guide patients and their loved ones through the stages of life and grief that accompany it.
Critically ill patients are falling through the cracks when it comes to palliative care. According to CIHI, while people with cancer generally have greater access to palliative care than those with other chronic or life-limiting illnesses, the data says we still need to get better. Among patients who died in hospital with a cancer diagnosis, only 41% were hospitalized primarily for palliative care, and three in four had no indication of palliative care needs prior to their final hospitalization.
Access to palliative care differs by geography and population. Even when palliative care services are available, not all Canadians know about these services or how to access them. Those who are informed about palliative care often find out about it too late. Finally, those who access palliative care tend not to receive it in the setting of their choice.
At the same time, at the end of life many decisions need to be made, taking into account an individual and their loved one's values and preferences. According to Statistics Canada, while cancer is responsible for the death of more than one in four Canadians, it represents 67.5% of the underlying medical conditions of all reported MAID requests.
CCS respects and supports all Canadians with cancer by helping them make informed choices and autonomous decisions about their care. These choices include MAID.
I will now turn to Daniel.
Daniel Nowoselski Advocacy Manager, Hospice Palliative Care, Canadian Cancer Society
Thank you, Kelly.
I'm speaking to you from the traditional and unceded territory of the Kanien'kéha, or Mohawk, in a place that has long served as a site of meeting and exchange among many nations.
Palliative care not only benefits the people who receive it and their loved ones. At a time when we are facing significant challenges in our health care systems across the country, CCS believes that investing in palliative care would also help relieve the pressures faced in other parts of our system and improve overall performance. However, the current specialized palliative care workforce is not large enough, and we do not have sufficient beds in hospices and communities to meet the growing demand and changing needs.
We recommend that the federal, provincial and territorial governments continue to prioritize palliative care in their bilateral funding agreements on health care to expand access to palliative care services and hospice beds. This includes increasing the availability of specialist resources for consultative advice, as well as education, orientation and training for all care providers in providing a palliative approach to care.
Furthermore, we echo the recommendations made by the Quality End-of-Life Care Coalition of Canada in their pre-budget submission regarding investments in research on palliative care and investing in data and standards for palliative care. Regarding access to MAID, a written submission from May outlined several recommendations regarding consistent access, data collection, ongoing program evaluation, and education and training for health care providers.
Ultimately, anyone with a life-limiting illness would benefit from greater and earlier access to palliative care from the point of diagnosis up to their death, but our health care systems do not have the capacity to consistently accommodate the choices someone with cancer and their loved ones would like to make regarding their goals of care, their setting of care or what their final days might look like. Everyone in Canada should have access to affordable, culturally safe and high-quality palliative care, as well as the ability to make autonomous decisions about the care that will impact the quality and outcome of their life.
Thank you.
The Joint Chair Hon. Yonah Martin
Thank you very much.
Ms. Purbhoo, I understand that you have just joined our meeting. Thank you for joining us. You will have five minutes.
Will you please turn your camera on so we can see you on the screen?
Dipti Purbhoo Executive Director, The Dorothy Ley Hospice
Good evening. I'm so sorry. I'm trying to turn my camera on, but we've been having some technical difficulties here.
I don't think my camera is going to turn on. Is it okay if I continue my talk without the camera?
The Joint Chair Hon. Yonah Martin
I see nodding heads, so yes, Ms. Purbhoo. You have five minutes.
Executive Director, The Dorothy Ley Hospice
Okay.
I have Donna Cansfield here, who is the chair of the board of directors at The Dorothy Ley Hospice. I'm going to ask her to start.
Donna Cansfield Chair of the Board of Directors, The Dorothy Ley Hospice
Thank you. I apologize as well for our technical difficulties.
Good evening, and thank you for the opportunity to speak with you. This is very important to us. My name is Donna Cansfield and I am chair of The Dorothy Ley Hospice board of directors. I have served as both a volunteer caregiver and a member of the board in my over 30 years of involvement with the hospice.
I support an individual's choice at the end of life, but choice involves options. One option is the support of end-of-life palliative care that's provided not only in the community but also at a residential hospice. Palliative care must be available to all members of our diverse community, recognizing and respecting cultural differences, language restrictions and limited family support. Supporting an individual and their families is what we do.
Through care provided in the home with palliative physicians or at a hospice residence, respite support for caregivers provided by trained volunteers, day programs, ambulatory service care at a hospice and bereavement support for families, we navigate the complex health system for families that are frustrated with systems that rarely speaks to one another. We keep clients out of emergency departments and out of hospital beds.
This is done through kindness, caring and our amazing staff. This is what we do. It's an extremely less expensive option, and it has been our experience that it's an option often chosen instead of MAID. However, we still support the decision of the individual, and we also provide support if asked to do so.
If you want to help us and you believe in hospice palliative care, we could use your support, which would help others.
Executive Director, The Dorothy Ley Hospice
I would like to continue. Thank you again for the opportunity.
My name is Dipti Purbhoo and I'm the executive director of The Dorothy Ley Hospice. I'm a nurse by background with over 25 years of experience in palliative and community care.
Palliative care is an approach to care that focuses on what matters most to the individual. Through pain and symptom management, education and support, the goal is to give the person as much time living with as much quality as possible.
Palliative care also focuses on helping loved ones through the process with information and support. It is provided by a team of people, including doctors, nurses, social workers, volunteers, family and friends. It is a powerful expression of compassion, kindness and caring, and it is something that each and every person and their family should have at the end of life. It is what we would all want for ourselves and our loved ones.
In Canada today, palliative care is not available to everyone. Access to palliative care is dependent on where you live, whether there are hospice palliative care services available, how much information you have about palliative care, whether you speak the language and whether your doctor or health care provider thinks it will help you. As a result, many people do not get access to palliative care, which often results in death in hospital without support, and in some cases people choosing medical assistance in dying.
Medical assistance in dying is a choice that is available to those with a life-limiting illness. However, when people choose MAID because they do not have access to all palliative care options to help ease their suffering, MAID is no longer about choice but is about having no choice and having no alternative but suffering with no help. MAID should not be a substitute for all the options palliative care can provide. It is but one option, not the only option.
In our experience here at The Dorothy Ley Hospice, we work with many, many patients at the end of life, as well as with their families.
Executive Director, The Dorothy Ley Hospice
What we have heard is that people choose MAID because they don't want to be a burden to their family. They don't want to suffer and die alone. They don't want to die in a hospital. They're worried about getting care at home, or they want control over how they die.
We have had many individuals here. We have an individual right now who has lived longer than the two months she was given, and she wanted medical assistance in dying because she didn't want to be a burden to her family. With the support of our team, she's still thriving and hopes to come to the hospice to die when her time comes. We had another client, in her late fifties, who recently had MAID in her lovely garden after a family celebration because she did not want her children to see her die.
In closing, the right to medical assistance in dying is very important to allow for choice. Even more important is access to palliative care as a human right for everyone so that everyone can experience end of life free of pain and can have as much time as possible to spend with their loved ones. Access to palliative care also ensures that those who do choose MAID are doing so because it is what they want, not because it is their only option to help with their pain and suffering.
Thank you for your time today. We apologize for our technical difficulties and for your not seeing us in person.
The Joint Chair Hon. Yonah Martin
Thank you for your testimonies.
We're going into our first round of questions by MPs. We'll begin with Mr. Cooper for five minutes.
Conservative
Michael Cooper Conservative St. Albert—Edmonton, AB
Thank you, Madam Chair.
I will direct my questions to Dr. Gallagher.
Dr. Gallagher, at a recent meeting of this committee, Dr. James Downar stated in his testimony that 98% of people who access MAID had received or had access to palliative care. By contrast, the data from the third annual Health Canada MAID report indicates that only 82% of those who had MAID received palliative care and only 88% had access. Those numbers differ from those presented by Dr. Downar.
As a representative of the Canadian Society of Palliative Care Physicians, can you shed any light on what the numbers are?
Clinical Professor, Palliative Medicine, University of British Columbia, Canadian Society of Palliative Care Physicians
Yes, and I have several things to say about that.
First of all, there are no measures for the quality of palliative care. This is extremely important because people have trouble defining it, so actually measuring the quality is also an issue.
What we do know is that 20% had access to palliative care after they requested MAID. When you think about it, this means that someone can be suffering pain, loss of independence and loss of meaning for two years in the community, and if they finally request MAID and are admitted to a palliative care unit, they will be listed as having received palliative care. It's important to keep that in mind.
If you look at the people who did not receive palliative care, it is approximately 12%. However, it's said that palliative care was accessible 88% of the time. Was it refused because the MD was not aware, or was it refused because the MD did not understand palliative care and the fact that it could be provided? For instance, I've had people with MS who appropriately needed symptom management and were told that they were not able to have palliative care.
If you take the people to whom palliative care was not accessible—the 12% of the 1,474 people who didn't have access to MAID—that's 177 people who had no access. If advocates for MAID came to the government with evidence of 177 people not having access to MAID, I'm sure the media would pick it up and something would be done, but we are not seeing this kind of response to the palliative care needs of people.
I want to draw that to your attention. It is not a minuscule number of people who lack palliative care.
Conservative
Clinical Professor, Palliative Medicine, University of British Columbia, Canadian Society of Palliative Care Physicians
Yes, I am.
Conservative
Michael Cooper Conservative St. Albert—Edmonton, AB
We did have specific testimony saying 98% of those who do undergo MAID receive or have access to palliative care. Is that accurate?
Clinical Professor, Palliative Medicine, University of British Columbia, Canadian Society of Palliative Care Physicians
I actually listened to that talk by Dr. Downar, and I was confused as to whether he said 98% or 88% of those who did not have palliative care had access to it.
I think there are huge problems with the federal public reporting because it's done by people who fill out a yes-or-no short-order form and often don't have extreme knowledge of palliative care. This data is at best deeply flawed, and at worst it's meaningless. We are told it's a critical component for supporting transparency and fostering public trust in the application of the law, but I do not feel it meets that goal.
Conservative
Michael Cooper Conservative St. Albert—Edmonton, AB
Do you have any further data respecting access to palliative care beyond Health Canada data, or are you strictly relying on that?