‘Getting MAID ain’t easy’
Personal Stories | August 3, 2022 | Ron
Ron and his wife Lori generously shared their stories with us — Ron as a person living with chronic pain, the challenges of the health care system, and his decision to pursue medical assistance in dying (MAID); Lori as a caregiver to Ron and the experience of a loved one choosing MAID. Ron accessed MAID on July 11, 2022. We are grateful to both Ron and Lori for their honest accounts of this experience.
Part 2 – Ron’s story
And so this brings us to the last few years, when COVID, degeneration and severe pain levels have all colluded to make the black hole of chronic pain a definite reality for me.
Even before March of 2020, my life was extremely restricted by pain, degeneration and IBS, to the extent that I could rarely leave the house for any length of time. If I did attend any activity, I fatigued very easily, and most of the time it was easiest and least painful to simply manage my own little world by myself without any outside distractions.
This meant that I tended to have relatively little contact with many people aside from closest family, and certainly for the last four or five years, I really have been in something of a prison, or a black hole if you will. It is extremely difficult to have any kind of pleasant social activity or interaction, or even a decent basic quality of life, when you’re coming up against 40 odd years of spondylo-arthritic degeneration.
So, in some ways, I felt like I had become invisible to the world, trapped in the black hole of the chronic pain prison.
Needless to say, due to all this I have been watching the evolution of the medically-assisted dying legislation in Canada for a fair number of years.
Living in Montreal, I was aware that the provincial government had passed assisted dying legislation, and that the federal government had based its legislation on the Quebec model, along with other jurisdictions. In the federal legislation, the requirement that the patient’s death be ‘reasonably foreseeable’ meant that people whose sole medical concern was a complex chronic condition did not meet the eligibility criteria.
Although my degeneration is significant enough that I believe I could even be a Track 1 MAID patient, I realized that since I did not have a definitive diagnosis of a terminal illness, most doctors would not approve me for MAID under the original legislation.*
It became clear that the need for medically assisted dying for those of us with severe chronic disease was not being met by the previous legislation. And so a new MAID bill was passed in March 2021 which removed the ‘reasonably foreseeable’ criteria and made access, hopefully, easier.
And so, due to these changes, I decided to talk to my General Practitioner (GP) about a MAID assessment in June of 2021, during a regular telephone consult to update prescriptions.
The first step one needs to take towards having a medically assisted death provision is to request a MAID assessment. This turned out to be the most difficult and frustrating part of the process.
There are basically three steps to becoming a MAID patient:
- In Quebec, you must complete a written request using the Request for Medical Assistance in Dying form, available from a health care professional, sign the form in the presence of a health professional and have the form signed by an independent and validly recognized witness. The health professional then transfers the request signed by him or her, the applicant and the witness to the professional services department of his or her Integrated University Health and Social Services Center (CIUSS) who will arrange an assessment. Getting this done is harder than it sounds.
- Have a doctor, or in some places a nurse practitioner, conduct the first assessment. If the first doctor decides that you meet the criteria and are a MAID patient, they then determine if you are a Track 1 or Track 2 patient, and that approval is forwarded to the health authority. (A Track 2 MAID patient, whose death is not reasonably foreseeable, has a 90-day assessment period that begins when the clinician starts reviewing the case.)
- Get a second doctor’s assessment. This is usually a fairly simple matter of confirming the previous assessment and diagnosis.
When I first talked to him about a MAID assessment, over a year ago now, my GP initially stated that he would be willing to put together a MAID assessment request on my behalf.
However, since MAID was a ‘new paradigm’ (Note: In March 2021, Bill C-7 changed the eligibility criteria) he insisted that I talk to my other doctors about MAID first.
While this was annoying, I complied in order to be cooperative.
Over the next three months, I consulted with my rheumatologist, pain specialist and cannabis specialist about a request to be evaluated for medically assisted dying. This consultation took longer than I was hoping, but of course I had to wait for appointments with each of these doctors.
Infuriatingly, none of these doctors were willing to put forward a MAID assessment request.
When I next contacted my GP, in September or October 2021, he told me he had changed his mind. Rather than taking ten minutes to create a MAID assessment request, as he had stated he would, my GP insisted that I would first have to be examined by doctors at the Edwards Pain Unit at the McGill Health Centre.
He stated again that the MAID process is a new paradigm for the medical system and this referral would be a necessary part of the process of obtaining a MAID assessment.
It was also extremely frustrating, given that we had talked about that pain clinic several years ago and determined that, along with the pain specialist I was seeing, there was little additional therapeutic value to going to a pain clinic for me.
Currently, I am still waiting for a letter from the Edward’s Pain Unit which will indicate the next steps in having my conditions assessed by that clinic. But I do not expect to ever receive this letter.
There were many delays in the process of getting to my MAID assessment, it was frustrating.
Extremely annoyed with my GP and other doctors, I wrote a complaint to my local health services authority.
I received a fairly quick response, but the response was that they did not currently have someone in the position responsible for coordinating MAID for the health service. Thus, I would have to wait until someone was hired to fill that position before I could begin to have an assessment request form put through.
This information was provided to me in November 2021. Finally, in March of 2022, after contacting the health authority again, I finally got in touch with the person who had been hired to organize MAID for my local health services.
And once that contact was made, the MAID request form was done very quickly, both medical assessments happened within a month, and I was determined to be a Track 2 patient.
Unfortunately, the stress and strain of months of simply trying to get this request together only added to what was already a situation of severe chronic pain.
I am amazed at how difficult it has been to simply get through to the stage of being able to have a simple, peaceful, dignified assisted passing.
Sadly, this has a lot to do with doctors who seem to want to impede their patients’ fundamental right to a medically-assisted assisted dying assessment.
It seemed to me particularly shocking that none of the doctors I talked to about MAID expressed the slightest amount of compassion or empathy about the situation.
They seem to have no idea how bad your pain levels have to get, and how much general health deterioration you have to have experienced, before you even want to talk to a doctor about MAID.
It was this callous and indifferent reaction from these doctors which disappointed me the most, and made me very happy that I will never have to deal with any of them again.
Today, I have passed my 90-day assessment period and will be having provision of MAID in the near future.
Nothing can prepare you for how hard it is to say goodbye to your family and closest friends, but I have been fortunate in being surrounded by people who care about me and have supported me throughout this difficult journey.
And as hard as this process has been, I am actually looking forward to no longer fighting this disease day in and day out, because I am tired now.
I need to rest.
*Clarifying note from Dying With Dignity Canada: Under Bills C-14 and C-7, a reasonably foreseeable death (RFND) does not mean that you had to have a terminal illness.