Medical Assistance in Dying Committee on June 16th, 2022

[The Joint Chair, Liberal, Marc Garneau]

Good evening and welcome to this meeting of the Special Joint Committee on Medical Assistance in Dying.

I would like to begin by welcoming the members of the committee, as well as witnesses and those who may be watching on the web.

My name is Marc Garneau and I am the House of Commons joint chair on this committee.

I am joined by the Honourable Yonah Martin, the Senate’s joint chair.

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.

The Board of Internal Economy requires that committees adhere to health protocols, which are in effect until June 23. It is mandatory for any person in the committee room to wear a mask or a face covering, except members who are in their place during the proceedings. All those inside the committee room should follow the best practice of maintaining a physical distance, and I'm sure you're very aware of all of that.

With that said, there are a few administrative points I'd like to bring up.

I would like to remind members and witnesses to keep their microphones muted, unless recognized by name by the chair. A reminder that all comments should be addressed through the chair.

When speaking, please speak slowly and clearly.

Interpretation in this video conference will work like in an in-person committee meeting.

You have the choice, at the bottom of your screen, of either floor, English or French.

With that said, I would like to welcome witnesses for our first panel this evening, which is a special one about protection of Canadians with disabilities and mental illness.

We welcome, appearing as individuals, Ms. Cheryl Romaire, Mr. Gary Nichols and Ms. Trish Nichols.

Thank you for joining us. We'll begin with opening remarks by Ms. Romaire, followed by Ms. Nichols, who will be speaking on behalf of the Nichols.

Ms. Romaire, you have five minutes for your opening remarks. Please go ahead. The floor is yours.

[Cheryl Romaire, As an Individual]

Hello. To the Special Joint Committee on Medical Assistance in Dying, thank you for making the time to hear me today. My name is Cheryl Romaire and I am a 45-year-old mother of two, known for my big smile and my hearty laughter, despite the suffering I endure.

The decline in my physical—

[The Joint Chair, Liberal, Marc Garneau]

Ms. Romaire, we're having a bit of a technical difficulty. Just hold on a second, please.

Can we turn down the sound in the room?

All right. Please go ahead, Ms. Romaire.

[Cheryl Romaire]

Thank you.

The decline in my physical ability when I became sick just over four years ago was rapid, brutal and, unfortunately, largely irreversible. Within a few months I went from having health and independence to being unable to walk up and down the stairs in my own home without assistance.

I'm living with adhesive arachnoiditis and axial spondyloarthritis—both autoimmune-triggered inflammatory spine diseases—as well as numerous related conditions, all of which cause many neurological symptoms, the loudest of which is intractable pain. My immune system is suppressed, leaving me at a higher risk for adverse outcomes if I get sick. The medications I take to try to manage my autoimmunity cause side effects that often rival the conditions they are supposed to treat. I am currently on 18 different medications.

I requested MAID for the first time in June 2019, but was denied because I didn't have a reasonably foreseeable natural death. I requested MAID for the second time in April 2022, and was approved. I remain approved for MAID and I choose to keep that approval for when I make the very difficult decision to use it.

I have a life-limiting chronic illness that causes pain severe enough that it can make me wish for death, but I wasn't given the mercy of a terminal diagnosis to go with it. Over the last four years I have tried everything there is available to help manage my pain and other symptoms. I have had 41 invasive and painful spine procedures, such as steroid injections, nerve route blocks and epidurals. I've had spine surgery three times, radio frequency ablations, acupuncture, physiotherapy and prolotherapy, and I've completed the entire program at the chronic pain clinic.

At the end of February 2022, I had a spinal cord stimulator implanted in the hopes that it would help reduce the pain enough to make my life livable. It helps, but not as much as we had hoped. I remained active in my health and health care even as I was going through the MAID process. MAID is my last resort.

After I requested MAID for the second time, it took the MAID care coordination service five weeks to find two MAID assessors willing to assess a complex case like mine, in which death was not reasonably foreseeable. If I had needed a third assessment, there would have been no third assessor in Alberta to assess me at the time. Legal and accessible are not the same thing.

The assessments that I underwent as part of the MAID process were extremely thorough, and my MAID-providing physician and I maintain an open line of communication. As an assessor, he looked at my entire life, not only at the health care records. The biggest safeguard there for people with disabilities is the assessors—high-quality assessors.

Of note is that I was diagnosed with bipolar I disorder 15 years ago, when I was 29 years old. It has been well controlled for years, but as a precaution, the first time I went through the MAID process I had a thorough psychological evaluation to determine my capacity to consent and to make sure that bipolar disorder was not a factor in my request for MAID.

The second time I went through the MAID process, another psychological assessment wasn't required, although if it had been, my second assessor happened to be a psychiatrist in her day job, so that would have simplified things for me.

For eight months last year my family and I filmed a documentary with Citytv, chronicling my journey with MAID. In the documentary I shared my struggles with the actual MAID process itself, as well as sharing a portion of the emotional impact that MAID has had, not only on me but on my family as well. It has forever changed us all.

In January 2021 I requested palliative care before requesting MAID for the second time. That request was denied because I did not have a terminal diagnosis. After being approved for MAID I requested palliative care again and was again denied. On that day in June 2022, I was clearly told by Alberta Health Services that palliative care is not available to anyone without a terminal diagnosis.

I don't know if having access to palliative care would have made much of a difference to my physical suffering or not, but I believe my quality of life is just as important as that of someone who receives a terminal diagnosis, and I would have welcomed any support.

My family and I hired a death doula, which for us turned out to be a very negative experience. I believe the idea behind a death doula is a good one, and I hope that the right people continue that work.

The pain management palliative care referred to by Alberta Health Services in its MAID policies and FAQs, which were published after the legislation changed in March 2021, doesn't seem to exist. Moving forward, there needs to be clearly defined, actually accessible palliative care provided to every patient who has been approved for MAID, regardless of their diagnosis.

I hope my lived experience can help shine a light on areas of the MAID process that may need improvement and also on the areas that don't. I thank you for taking the time to listen. I welcome any questions.

[The Joint Chair, Liberal, Marc Garneau]

Thank you, Ms. Romaire.

We'll now go to Ms. Trish Nichols.

Ms. Nichols, you have five minutes.

[Trish Nichols, As an Individual]

Thank you very much. I am speaking today on behalf of our brother, Alan Nichols, who was given MAID. Alan received medical assistance in dying—assisted suicide—on July 26, 2019, when MAID was still reserved for those whose death was foreseeable. Alan did not meet the MAID criteria. He did not have a foreseeable death. He struggled with recurring mental health crises, but he always recovered.

On June 16, 2019, Alan was placed, against his will, in an ambulance and taken to the Chilliwack General Hospital. Under the Mental Health Act, for his own safety and protection, he was admitted after a neighbour had called the RCMP for a wellness check.

My husband Gary flew from Edmonton to see his brother that very day. Alan asked Gary to bust him out, but Gary thought he would be safer in the hospital and would get the help he needed. My husband Gary lives with the regret of that decision to entrust Alan's wellness to a medical facility.

Alan was transferred to psychiatry the next day. He refused visitors, including family, which disturbed us, though we trusted his treating team. Our family received no hospital updates until eight days after admittance to emergency.

Alan's doctor said she would check with staff and gather information, and asked Gary to call her back to discuss further. Gary called back and learned that Alan's doctor had vanished for a three-week holiday. For the next three weeks our family was misled by his social worker, who assured us that Alan was doing well. Unknown to us at this time, on July 19 an attempt to give Alan MAID had ended in failure. The hospital had not followed the prescribed MAID protocols, as no doctor was present, no family had been notified and they had no clear instruction where to send Alan's dead body.

Alan's doctor called Gary three days after this botched attempt, announcing that Alan would receive MAID at the end of the week. She was delighted that Alan had agreed to a final visit with us and suggested that we make no waves or he could actually deny our visit. After driving 12 hours, we were denied the visit until the next day.

Five weeks after his admittance into emergency for his own safety and protection, we were finally allowed to see him. Alan was not making any sense in the things we talked about. He refused to wear his cochlear apparatus, so it was difficult to communicate effectively.

Fear began to grip us and we began pleading and begging with the medical staff to stop this MAID. We asked for a delay as we could not reach our oldest brother, Wayne. Alan went into a fit of rage, screaming uncontrollably. I asked his doctor right then, “Is this what you call a sound mind?” Alan was euthanized minutes later.

On Alan's MAID form, hearing loss was stated as the reason for application. How can doctors accept, approve and administer a death for this when Alan did not have a terminal illness and his hearing had been corrected, and all the while he had been involuntarily admitted for suicide protection?

Alan did not have a valid diagnosis for MAID. He was eating, walking and talking, according to his social worker, so why did they keep him in the hospital if they weren't treating him for being a danger to himself? Placing him involuntarily in hospital care is what put Alan in imminent danger. We still have no answers after repeatedly trying to have his death investigated.

Would you feel safe now, bringing your suicidal loved one to seek medical care for recovery when there are no oversight or stringent safeguards surrounding a procedure that kills people?

Alan chose to live alone, managing his daily affairs. He owned his own condominium. He had money in the bank. Each week, family would pick him up and take him to buy groceries and help him with his banking. He didn't rely on our health care system for any support. His family and neighbours lovingly kept an eye out for him. It was our health care system and this legislation that failed him, resulting in his premature and wrongful death.

Three years now we have spent in this nightmare. We are so angry and insulted at how they just all turned their heads as they listened to us begging for Alan's life. Do you know what this has done to our family? With no justice, no accountability and no stringent safeguards to prevent such a wrongful death, how can our government even be looking at expanding MAID laws?

There are currently no laws protecting the vulnerable or their families from MAID. Most Canadians think MAID is to alleviate the physical suffering at the end of a life, not a ploy to end a life.

Thank you so much for hearing us.

[The Joint Chair, Liberal, Marc Garneau]

Thank you, Ms. Nichols.

I'll now turn it over to my co-chair, Senator Martin, for a question round.

[The Joint Chair, Hon. Yonah Martin (Senator, British Columbia, C)]

Thank you, Mr. Joint Chair.

After these very compelling testimonies, we'll begin with the first round of questions.

Mr. Barrett, you have the floor for five minutes.

[Michael Barrett, Conservative, Leeds—Grenville—Thousand Islands and Rideau Lakes, ON]

Thank you, Madam Co-Chair.

I want to thank you, Ms. Romaire, for joining us today and sharing your personal experience with us.

I'd like to thank you both, Ms. Trish Nichols and Mr. Gary Nichols, for joining us and for sharing your very personal story as well.

My question, Madam Co-Chair, through you, is for Ms. Nichols. As I mentioned, I appreciate the very personal and moving testimony shared by all of the witnesses.

Could you just confirm the timing, Ms. Nichols, of Alan's receiving MAID, and what his diagnosis was at that time?

[Trish Nichols]

Yes, I can confirm that he was admitted on June 16, 2019, and he received MAID on July 26, 2019.

[Michael Barrett, Conservative, Leeds—Grenville—Thousand Islands and Rideau Lakes, ON]

Okay. In your testimony, you shared that it was an involuntary admittance to the hospital. It was for suicide prevention. Is that correct, ma'am?

[Trish Nichols]

That's right. We understand that was exactly what it was for, because the RCMP had found him dehydrated and not coherent. He was confused. They took him to the hospital and admitted him under the Mental Health Act.

[Michael Barrett, Conservative, Leeds—Grenville—Thousand Islands and Rideau Lakes, ON]

Okay. What recourse have you attempted to obtain since that time?

[Trish Nichols]

I'm going to allow my husband to answer that question, if that's all right.

[Michael Barrett, Conservative, Leeds—Grenville—Thousand Islands and Rideau Lakes, ON]

Yes, the question is for Mr. Nichols, please, Madam Co-Chair.

[Gary Nichols, As an Individual]

We have filed many complaints.

We filed a complaint with the college of physicians in B.C., and they stated that they would not follow through with an investigation unless there was a criminal investigation by the RCMP. We went to the RCMP, and they said it was out of their jurisdiction.

In addition, we've written to the federal minister of health, the provincial minister of health and MLAs. There was actually only one MLA in the Chilliwack area who assisted us, and they got the same result. They either got the runaround, were played ping pong with, or were told that it was not in their jurisdiction or they would pass them on to somebody else.

After three years, we've gotten no justification, no recourse. It's been a really slow, trying process, and it has really hit on our emotions. It's been really tough.

[Michael Barrett, Conservative, Leeds—Grenville—Thousand Islands and Rideau Lakes, ON]

Okay. Thank you, sir.

I'm wondering, with respect to those complaints and the responses you received from the College of Physicians and Surgeons and from the RCMP, if you would be able to provide copies of those to the committee clerk. It may be helpful for us to see those as we finalize our report. The clerk would then be responsible for ensuring that any personal or confidential information was redacted.

Is that something you would be able to provide, sir?

[Gary Nichols]

We can provide the one from the College of Physicians. The RCMP actually just phoned my brother. He was in the Boston Bar area, about 45 minutes from the Chilliwack area, where Alan was euthanized. He had gone to the RCMP station. I can you give the case number and the constable's name, but all he received was a phone call saying, “Sorry, we can't help you. It's out of our jurisdiction.”

[Michael Barrett, Conservative, Leeds—Grenville—Thousand Islands and Rideau Lakes, ON]

Thank you for that, sir.

In March of 2023, MAID will be legalized for mental disorders. The expert panel suggests that no change is necessary to the legislation in its current form, and practitioners are advised to proceed on a case-by-case basis.

Based on your experience, how do you receive that?

[Gary Nichols]

I don't want to see MAID expanded until the safeguards are actually enforced, because there was a safeguard in Bill C-14, and that didn't help my brother. So—

[Michael Barrett, Conservative, Leeds—Grenville—Thousand Islands and Rideau Lakes, ON]

Pardon my interruption, but what specific safeguard are you referring to?

[Gary Nichols]

His natural death was not foreseeable. He had no terminal illness. He was being treated for absolutely nothing in the hospital. He could have lived for several years, so his death was not foreseeable.

[The Joint Chair, Hon. Yonah Martin]

Thank you.

[Michael Barrett, Conservative, Leeds—Grenville—Thousand Islands and Rideau Lakes, ON]

Okay. Thank you, Mr. and Mrs. Nichols.

Thank you, Madam Co-Chair.

[The Joint Chair, Hon. Yonah Martin]

Thank you very much. Next we'll have Dr. Fry.

You have the floor.

Dr. Fry, you're still muted. You have to unmute, please.