Evidence of meeting #3 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 maid.
A video is available from Parliament.
Chair and Associate Professor, Palliative Medicine, Queen’s University and Chair, Royal College Specialty Committee in Palliative Medicine, As an Individual
I'm speaking about how I would respond.
Senator, Saskatchewan, CSG
I'm talking about a patient saying, “Okay, I am coming to the end of my willingness to pursue palliative care, and now I'd like to discuss MAID.”
Chair and Associate Professor, Palliative Medicine, Queen’s University and Chair, Royal College Specialty Committee in Palliative Medicine, As an Individual
I would like to answer the question.
Senator, Saskatchewan, CSG
This is the question. When patients choose MAID at this point, what do you do?
Chair and Associate Professor, Palliative Medicine, Queen’s University and Chair, Royal College Specialty Committee in Palliative Medicine, As an Individual
I will first make sure to know what is going on with the patients and what they understood about palliative care. That is crucial. Palliative care is so misunderstood by people, and people don't understand what natural dying and death look like.
I am saying that's part of how we respond.
Senator, Saskatchewan, CSG
I'm not asking that question. My time is very short.
I would like to know what it is that you do when a patient says that. What do you do? Do you call a local MAID provider?
Chair and Associate Professor, Palliative Medicine, Queen’s University and Chair, Royal College Specialty Committee in Palliative Medicine, As an Individual
That's what I'm trying to explain.
I'm explaining that first we explore the whole question with the patients and ensure they understand all the options, including palliative care. They may have misconceptions, because palliative care is very stigmatized.
Senator, Saskatchewan, CSG
No, if they're going through palliative, they've understood that. Now they've come to a new conclusion.
Liberal
The Joint Chair Liberal Marc Garneau
Thank you. We're going to have to end this round.
Senator Martin, we'll go over to you for three minutes.
The Joint Chair Hon. Yonah Martin
Thank you. My question is for Dr. Herx.
I've asked several other witnesses, and I just want to be clear. We have MAID and we have palliative care as part of a spectrum of care. In British Columbia, I've heard from some witnesses that there is a lack of funding, or less funding, for palliative care because there seems to be a certain competition. I don't have a better word for it.
Would you speak to any examples, such as the one we have seen in B.C.? The Delta Hospice Society is one example. Has there been less funding available for palliative care, even though we have this national framework?
Chair and Associate Professor, Palliative Medicine, Queen’s University and Chair, Royal College Specialty Committee in Palliative Medicine, As an Individual
Thank you, Senator Martin.
Unfortunately—and that was an add-on to the question Mr. MacGregor asked me earlier—while we haven't seen new investments in palliative care in terms of improving accessibility and being able to measure the quality of palliative care that's being referred to in the Health Canada reports, we have seen a loss of palliative care resources.
As I referred to in my brief remarks, and there are further details in my written brief, existing palliative care resources have been used to provide MAID. Palliative care funding in different provinces is being used to fund MAID programs, so we have less access to palliative care than we had before MAID was legalized.
We have clinicians who are now being asked to provide MAID. Lots of hospice palliative care nurses have now left their jobs because they are so demoralized by being unable to provide the palliative care that they went into their job for. It's been lumped into budgets with palliative and end-of-life care, and MAID is being funded out of existing palliative care dollars.
It is compromising already scarce resources for palliative care and, as I mentioned, some hospices have been forced to admit people just to provide the procedure of MAID, not to provide holistic palliative care. They are using this scarce palliative care resource, at the cost of other people who want palliative care and a natural death not being able to access it. We have had devastating impacts on palliative care in the last few years.
The Joint Chair Hon. Yonah Martin
I wonder if I can use my remaining time for you to finish your answer to my colleague, Senator Wallin, about what your response would be to a patient in palliative care who wished to access MAID.
Chair and Associate Professor, Palliative Medicine, Queen’s University and Chair, Royal College Specialty Committee in Palliative Medicine, As an Individual
First and foremost, our expertise is in addressing suffering, so we come alongside a person to understand what's going on in their unique context. Not all requests for MAID are from somebody who wants to immediately terminate their life. Often requests for a desire for death in MAID come from suffering that needs to be heard, and lament and grief that are a normal part of coming to terms with the possibility of your own death.
We have all kinds of interventions and supports that can help reframe living for people, and people want to live. Our first responsibility is to help make sure what it is a person is actually asking for and that they understand all the things that are available to them. Absolutely, we talk to them about the procedure of MAID and what it is, and if that's what they want, we make sure that they have access to it.
That is not precluded from.... They are not separate in the sense that they can't have MAID if they have palliative care. I want to be clear on that. We provide palliative care to everyone regardless, but MAID is not part of palliative care. It is a separate medical procedure and it shouldn't be provided through existing palliative care resources or in the context of palliative care.
Liberal
Liberal
Liberal
James Maloney Liberal Etobicoke—Lakeshore, ON
I'm not sure it's a point of order, but I haven't had the benefit of seeing Dr. Herx's paper and I'm not sure anybody else has either. Perhaps that's because it hasn't been translated.
To the extent that the data she referred to is not in her paper, with respect to people leaving the industry and MAID detracting from the resources available to the palliative care sector, I wonder if she could provide that information to us in writing.
Chair and Associate Professor, Palliative Medicine, Queen’s University and Chair, Royal College Specialty Committee in Palliative Medicine, As an Individual
Yes, thank you. It's all in my brief. I'm sorry; I submitted it in English only. It is with the clerk of the committee.
Liberal
The Joint Chair Liberal Marc Garneau
Very good. Thank you very much, Dr. Herx.
Thank you very much for your testimony this evening, Dr. Naud.
We very much appreciate hearing from you and your answering our questions.
We will now suspend in preparation for panel number three.
Thank you. Good evening.
Liberal
The Joint Chair Liberal Marc Garneau
I call the meeting back to order.
We're going to start panel number 3. I don't see my co-chair—oh, I see her now.
Senator Martin, it's over to you.
The Joint Chair Hon. Yonah Martin
Thank you, Mr. Co-Chair.
We will have three witnesses for this third panel. If I can, I will make a few comments about what will happen.
Before speaking, please wait until one of the co-chairs recognizes you by name. I would remind you that all comments should be addressed through the joint chairs.
When speaking, please speak slowly and clearly. Interpretation in this video conference will work like an in-person committee meeting. You have the choice at the bottom of your screen of “floor”, “English” or “French”. When you're not speaking, please keep your microphones on mute.
With that, I'd like to welcome our witnesses for the third panel. As an individual, we have Audrey Baylis, who is a retired registered nurse. We have Diane Reva Gwartz, nurse practitioner in primary health care, and Dr. Sonu Gaind, who is a professor.
Thank you all for joining us. We will begin with opening remarks for five minutes each. First we'll have Ms. Baylis, then Ms. Gwartz, and then Dr. Gaind.
Ms. Baylis, the floor is yours.
Audrey Baylis Retired Registered Nurse, As an Individual
Thank you, Madam Chair and committee members.
The reason I requested to be a witness before this committee is twofold. The first part is to have legislation changed to be able to preplan the end of life while still a healthy individual—for example, when you make your will—and to be able to make a choice. The second part would be education, as I believe that attitudes do not change without education.
My husband had MAID on November 23, 2020.
He had a double bypass in 2000 and a pacemaker/defibrillator installed in 2009. He had a good quality of life until 2019, when his condition began to worsen. In the spring of 2020, his family doctor advised him that there was no further treatment available to improve his quality of life. The doctor, who was very proactive, discussed what to expect for quality of life until his end of life and described his choices: palliative care or MAID. For the next six months, we travelled Ontario, visiting relatives and friends.
As his condition worsened, he sought MAID. A date was set for November 29, his birthday; however, his condition got severely worse, and on November 23, he had MAID. The family all came on the morning of the event, and we have nothing but good memories, because he was there for all the conversations, and he said goodbye.
When the doctor came, she asked if he was ready. Lester gave a hug and said he loved them. He went into the bedroom and lay on the bed. I lay beside him and held his hand, and he said goodbye. The doctor asked him again if this was what he wanted, and he responded, “Yes.” What better way to end a life? We have only good memories.
The reason that I am so passionate about preplanning is that prior to the age of 31, I had three cardiac arrests and had two-thirds of my stomach surgically removed. I had three children and worked full time, so I did worry about my future, and 50-plus years ago, I put a plan in place for my end of life. I have a document signed by my family and friends for them to take me to Switzerland for medically assisted death. The document clearly states my wishes and the criteria for my family to make that decision.
To conclude, the need for preplanning is to ensure you have a choice on how you would want to proceed with your end of life, beyond religion and external influences, prior to a medical event or accident that later will make you incompetent to make that choice.
On the second part, education, I recommend a federal-provincial initiative to add to the curriculum in all medical teaching institutions the “last phase of life up to end of life”, emphasizing the need for the patient to be part of all medical discussions. This mould of talking to the family, not the patient, needs to be broken.
I would like to see this done in three parts. First, in the “last phase of life to end of life” section, the doctor states that he or she has no further treatment to offer to the patient to enhance their quality of life and discusses with the patient what they could expect as their condition worsens up to the end of life, and what their choices are. The second part is palliative care and MAID; these should be taught in depth. Number three is continuing education.
Here's my final thought. I personally find it hard to understand the negativity around MAID, as in both scenarios you will die of a drug unless you die of a coronary. Palliative care is a longer process in which you are well cared for and kept comfortable with a drug until your body shuts down, most of the time as a result of the same drug. In MAID, you choose your date and have your family with you, and you are still part of all the conversations up until you say goodbye.
I would like to thank Mr. Longpre for his assistance over the last few months, and Adam Moore for recommending me.
Thank you. I'm very willing to answer questions.
The Joint Chair Hon. Yonah Martin
Thank you very much, Ms. Baylis.
Next we'll go to Diane Reva Gwartz for five minutes.
Diane Reva Gwartz Nurse Practitioner, Primary Health Care, As an Individual
Thank you for this opportunity to present to your committee.
I have been a nurse practitioner for over 20 years and a MAID assessor and provider since June of 2018. At the time that I became involved with MAID, there were no community providers in Niagara, where I live and work, and no funding mechanism for NPs to provide this care. As such, I worked as a MAID practitioner without any financial compensation for almost three years, until specific funding was established one year ago.
To date, I have completed 55 MAID assessments and 24 provisions, and I am an active member of the Canadian Association of MAiD Assessors and Providers.
In addition, I think it is relevant to this committee that I am also a family member of a recipient of MAID, as my mother—who had both serious physical health problems and a long-standing mental illness—had an assisted death in August of 2018.
I was asked to present today on the implementation of MAID in Canada. I am going to speak to what I think have been the major successes and challenges, as well as recommendations that I have for moving forward.
First, I credit Canada for establishing assisted death as a universal health care option for all citizens who meet the eligibility criteria, and for the focus of care being centred on patient needs and desires.
In addition, I believe that the changes in legislation with Bill C-7 in March of 2021 have improved the process of MAID, specifically with the elimination of the reflection period, the introduction of the waiver of final consent and the opportunity to access MAID for those whose death is not reasonably foreseeable.
As a MAID practitioner, I consider it a privilege to be able to provide this care to those who are suffering intolerably, but it is also the most emotionally challenging work of my nursing career. With increasing numbers of MAID requests and the significant workload demands related to the assessment of patients who do not have a reasonably foreseeable death, the dearth of MAID practitioners is a serious challenge to care provision.
With anticipation of the passing of legislation to allow for mental illness as the sole underlying medical condition, this workload will undoubtedly increase dramatically. Across Canada there are nurse practitioners who are interested in providing MAID care but require a funding mechanism in order to do so. This country’s network of MAID practitioners is an amazing resource that needs to be protected and expanded to allow for the availability of MAID as an aspect of end-of-life care to all Canadians.
Unfortunately, in many communities institutional policies prevent the provision of MAID to those requesting it. For example, in my community, due to hospital policies and resources, it is difficult to receive MAID in the hospital system. The rehabilitation centre and hospice both have policies that specifically prohibit the provision of MAID in their centres. It is inequitable and unjust that individual institutions are able to establish policies that deprive those who require their services the opportunity to access an assisted death.
The final challenges I'd like to address are limited awareness, community supports and access to assisted dying services.
There are many communities, like my own, where the awareness of MAID as an end-of-life option is very limited and not well communicated to patients and families. In addition, support services for MAID are extremely limited. As community providers, we need assistance from the health care system for management of referrals, administrative support and community liaison activities. Lastly, inequitable access to MAID care, geographically, is a significant challenge in this country.
Finally, here are my recommendations.
As I’m sure you are aware, there is significant interest in the concept of advance requests for assisted dying. This would allow for patients who are preparing for a decline in health status and capacity—for example, those with dementia or neurological conditions—to specify criteria and/or conditions that would then trigger their MAID request. Currently, patients often feel caught between choosing to have MAID before they are actually ready and missing the opportunity to access MAID due to loss of capacity.
The need for enhanced resources for MAID practitioners is already a significant issue. However, with the potential changes as of March 2023, planning for health care resources is critical. Adequate funding to ensure MAID practitioners are able to provide this care, as well as to support training of new practitioners, is fundamental in anticipation of the increased demand and time commitments that the assessment process will require for those with mental illness as their main condition.
In addition, a plan is needed to ensure that there will be the necessary psychiatric resources in place to support this work. It is essential that planning to ensure adequate funding and supports occurs prior to the implementation of legislative changes.
Lastly, those of us providing MAID care in the community desperately need support. There needs to be increased funding for those who provide MAID in the community, including nurse practitioners, and an organizational infrastructure to support the work that we do. This will ensure that MAID care is available for those who wish to die peacefully in their own homes, at their request and surrounded by those who mean the most to them.
I appreciate having had this opportunity to present to your committee and to share my thoughts on the implementation of medical assistance in dying in Canada. I look forward to your questions.