Family feedback
Below you’ll find insight from family members about their experience with the MAID process and what they’d like providers to know.

Family member #1:

One single theme that surfaces repeatedly was that people were not made aware of possible support resources. Needless to say, they felt very alone and set adrift on this unknown rough sea.

Family member #2:

It was the perfect day, the sun was shining on 16 of us who gathered in a beautiful garden yard, a babbling brook, wild flowers, husband playing guitar, her young adult kids on each side. As the time- – 6pm – grew closer, we were all looking and watching knowing the doctor was due to arrive. When he did, he arrived by motorcycle and we all smiled and laughed. I think, in the moment, we all saw him as human. One does not need to pull up on a motorcycle but one does need to find their own authentic way to truly connect, as one human being to another.

Family member #3:

When my mother and I were going through the process with my stepfather, one of the medical students asked if she could sit in during the procedure as an observer. Needless to say both of responded with a quick NO. I was shocked. Don’t get me wrong – I am one of the first to support on-the-job training but in this particular case found the question inappropriate.

Family member #4:

I was with my dad when he had his final assessment and there was no explanation of the “possibilities” of MAID; we only added ritual and ceremony by fluke because our rabbi attended. So, my feedback would be to encourage providers to let people know that while MAID is a medical procedure, they are free to include ritual and ceremony; to invite whoever they are comfortable inviting; that they can do it sitting up or lying down, in their home, hospital bed or even outside — that their people can come close and hold them tight while they die and maybe to even share a few examples of beautiful MAID deaths they have witnessed in order to give recipients some ideas of what is possible.

Resources

MAID Family Support Society

MAID Family Support Society and Dying with Dignity Canada

Other organizations:

Hear our team talk about their experiences with MAID:

Disrupting Death – Cynthia Clark

Disrupting Death – Robin Farr

Family member #5:

In our case, the real challenge was in accessing the appointment with an assessor in the first place. I know that Victoria has a high request rate but the line was long and my husband was very anxious about losing capacity as he waited for that first appointment. So, more access. But, in my calls, this has not been the case and people were happy with the timeliness and the clarity of their appointments.

I think the care and compassion that people experience is remarkable and that seems to be the real consensus. A big challenge, however is in cases of dementia when the assessment of that “ten minutes to midnight” approaches, certainly can be a tricky one to navigate and the role of the provider is crucial for support. Sometimes, I’m sure that doesn’t work out as perfectly as it could be wished. Not sure what to suggest.

I do tell friends who assume that they will access MAID when they want it that education of medical personnel is essential and that’s where CAMAP comes in.

Family member #6:

From my own experience, I will say it would have been helpful to understand the dying process. Meaning that until they are declared dead, they can still hear what is being said in the room. It may have also been useful to know what the body would then look like (ie. change in color, gases being expelled) etc. as I have had clients share that this is also a jarring image they have been left with.

I also wish I had known how quickly the process goes and that has been the same of many people I have supported.

At the time of my father’s MAID, I had zero idea about any kind of support systems that existed. They had offered a social worker to come talk to me, but I wanted to speak with someone who had lived experience. That is a BIG piece for me. I think being able to contact someone who has been through it is invaluable. Offering resources!

It would have been nice to know I would be stuck dealing with the medical appliances they used. I found the IV stand and box of syringes etc. to be hard to look at once he died.

My dad had bad veins so I was careful to ask for a nurse who was really gifted with veins to put in his two IV lines. One vein ended up blowing on the day of his procedure, which was not a nice thing to go through. But empowering people to understand the process and to advocate for what they need is a good thing as well.

I wish I had known I could have spent more time with his body and I could have escorted him to the funeral home.

I wish I had known that we could have dressed him after his death. Shaved him, etc. Had more of a ceremonious or ritualistic goodbye than just the death. We just had no idea.

From people I have supported, I have heard them say they wish they had a better idea of how the meds worked.

The biggest complaint I can think of is people saying it all went very quickly (like the 24 hour approval until procedure), but that is something that we can’t really help prepare people for if they have no previous knowledge about MAID.

There is a big lack of general knowledge on all things MAID and all things death – as we know. So much about these things should be publicly educated so as to relieve some of the expectation and pressure on the doctors. Unfortunately, I have heard cases of doctors with terrible bedside manners who actually really upset their patient’s families. So more education and training on how to deal with the grieving or soon to be grieving would also be helpful.

Family member #7:

I feel like this is so glaringly obvious but I’ve heard this more than once. We all know that the provider’s first duty is to their patient, but I’ve heard a few times that the family member felt confused, uncertain of what was going to happen, and that likely the simple overwhelming aspect of the situation lends itself to inhibited intake of information so offering to answer questions, restating processes/ procedures could be a game-changer for some who describe the whole experience being too fast, too rushed and not being adequately informed.

When my aunt had MAID, the MAID nurse made a special appointment BEFORE the provision day – about 2 days before – and the purpose was to build rapport and answer questions and try and alleviate any day- o” angst and awkwardness. I have often wondered how typical that is and whether that is still a practice or if that happened because MAID was so new in May of 2018. At any rate- it took a whole lot of the angsty part away from the day of as we all felt so well informed and prepared as to what was going to happen.

Family member #8:

People have told me that finding information about the MAID process is difficult.

I have recently been told by a client I supported that they were not prepared for the size of the needles used in the procedure. Perhaps a heads up from the MAID assessors would help prepare people. I have been told there is one provider in Kelowna that hides the tray from the patient’s view.

People should be given an outline of what will happen on the day of the procedure so they can fully prepare as I understand this is not always the case.

Let people know that there is a possibility, however slight, that their date may be changed due to unavailability of providers. This happened with my friend — she had her heart set on the date she was given initially only to be told a couple days ahead that the provider was no longer available. It was devastating for us all but it worked out in the end.

Family member #9:

The thing that surprised me was the amount of meds and the size of some of the syringes. That was shocking. We were well prepared otherwise. This is important information to impart.

Family member #10:

Though MAID providers generally approach their work with care and compassion, mystery surrounding the medical procedure itself causes angst for some. At least in my experience both personally and after connecting with people in my peer role. There is value in clinicians explaining in detail what the procedure looks like. This is dependent on the clinician first asking if people want to know. The more knowledgeable people are, the less frightened or upset they may be.

Also, I understand that it may not be a clinician’s role to check in to ensure that a person or family has sought supports (social worker, MFSS etc.), it would go a long way if a doctor or nurse practitioner checked in and asked, “What are you doing to get the care you need?.” I have had people I’ve supportes say they felt a doctor just did their job and left. At the same time, I was very lucky in that the doctor that provisioned MAID for my husband spent a little time with me to ask those important questions.

Family member #11:

The MAID team in Oakville Ontario were kind professional and unobtrusive. The only hiccup from my perspective was that the palliative care doc in attendance asked to say a prayer after my son had passed. I felt that this was inappropriate and inserted her agenda into the family’s space.

Family member #12:

It’s not only important that family be offered support, or something a MAID provider should remember, it should be mandatory – not left to families to do a random internet search to locate help. What about those that don’t look for help as they struggle?

And thank goodness for MFSS as the health system provides nothing for families. This can be incredibly damaging for families who have no context for the process, for witnessing a loved one’s incredibly quick death, for the lack of understanding on what they witnessed and were part of and their guilt and anguish as they try to understand and manage after.

Not everyone pre-MAID wants candles and music and time to spend with important persons, and family must honour the final wishes. But some families, after MAID is complete, are left damaged and struggling and without support to guide them to understanding, to making sense of what they witnessed, or to gently encourage seeking professional help if anguish doesn’t ease.

I’m still frustrated by what my mom’s MAID was like. Super fast, a complete lack of preparation, a lovely doctor and nurse and it’s what my mom wanted but the aftermath I wouldn’t wish on anyone.

Family member #13:

My father was well supported by Dr (we’ll call her Brenda, not real name) even though we only met Brenda at the hospital on the day of the procedure. It was obvious that Brenda was a very warm and caring doctor. She gently asked my dad the necessary questions and explained what he and we should expect. At one point Brenda and I went down to the cafeteria for a coffee and she answered all the questions I had that I didn’t want to ask in front of my dad; I think that was part of my way to cope by asking medical and procedural questions and about how she coped with the work. She probably fully understood that it was my way of coping. Brenda was a calm and reassuring presence without being intrusive. After my dad died, I am sure I saw a bit of a tear in Brenda’s face, but she knew my dad went peacefully. My sister and I were fortunate to have a wonderful person helping us on that tough day.

Family member #14:

In a support call, a client said that she really wondered what kind of person does this Track 2 work, and that the doctor seemed sad after the death, so the family asked straight out if the doctor was okay. The doctor said “helping people not suffer any longer is what makes this work meaningful, but it still doesn’t make my job any easier.” Hearing this, the support client said they were very relieved to see the doctor’s humanity. It helped to melt away some of the moral distress they were experiencing. This client was not present during the provision/death, but this story was important enough to relay to them as an extended family member who was grieving. It made a big difference to them and was greatly appreciated.

Family member #15:

The physician’s entire body but especially his shoulders visibly relaxed, and with a big sigh he said “Oh good, I don’t have to explain everything from scratch to you!” when my dad said he knew about MAID already because his wife (my mom) had a MAID death a few years before. We see the stress you are under to do this life-and-death work. Thank you.