Medical assistance in dying, our family’s journey
Each time the Medical Assistance in Dying (MAiD) service is requested, it creates unique and touching stories. What an amazing right we have here in Canada!
One year ago, my husband Dennis was a MAiD pioneer, being the first on BC’s Sunshine Coast to ask for the service at home that quietly, tenderly, painlessly snuffed out his candle, ever-dwindling from pulmonary fibrosis. What greater gift could we offer our loved ones than a soft gentle passing when their end of life is known and imminent?
There is no turning back the clock on certain diseases. The time is here to open the door for discussion about this gift of MAiD that we have for ourselves and for our loved ones when it’s our turn to go from incurable and devastating conditions. Dragging illness on into the terrible murky depths of pain and suffering are no gift, for the patient or their loved ones. The competent, caring team of medical professionals were so calm and reassuring and made the journey to the end bearable and in fact a joy, in spite of the sadness.
Why am I sharing this story? If I can help even one family along this difficult end of life journey, my work will be done. I know that not all will agree with his decision, so please stop now if you don’t want to hear about medical assistance in dying or euthanasia. If nothing else, this is a story about gratitude.
In December 2015, Dennis went to his local longtime family doctor here in small town Gibsons, BC, Canada to complain about chest congestion ahead of a planned trip to Mexico in January. The doctor sent him for x-rays and said, “There might be some scarring on the lungs that might or might not be pulmonary fibrosis but carry on with your trip to Mexico next month and we’ll look at it when you get back. There’s no treatment anyway so if you feel good, go and enjoy yourself!”. A specialist appointment was made for May.
In January in Puerto Vallarta Dennis felt he just couldn’t walk up the hills, a big change from normal as our hilly town makes us very good mountain goat hill walkers. He saw a doctor in PV who diagnosed walking pneumonia and gave him some antibiotics.
When Dennis communicated long distance to his family doctor that he was feeling worse, the specialist appointment was moved up to the end of February when he was indeed diagnosed with pulmonary fibrosis. Having a label and knowing it was untreatable with a time window of 1 to 3 years certainly gave us pause for thought but as it was irreversible we felt ourselves more able to accept it without much need for a valiant fight. Instead, we took every opportunity to LAUGH and make the best use of power, strength and curiosity for whatever time he had left and to celebrate and cherish every moment.
Even in those early days Dennis said “Well if it gets a lot worse at the end, I may not hang around, I may take some action at the end to speed that up”. In July 2016, Canadian law passed MAiD, medical assistance in dying for certain medical conditions and only for those with their full mental capacity. I think this gave him some comfort and peace of mind. We did not actively discuss it further.
We made use of every opportunity to enjoy ourselves, enjoy our friends and family and push ourselves gently and gracefully to the edges of his gradually shrinking physical abilities. With good friends, we went on a plein air painting trip to Alert Bay in June, we joined 140 others in August at the 4th Annual West Coast Urban Sketching meetup in Tacoma, WA for three fun days of sketching with others.
The crowning glory of the year was spending the month of September in his beloved England, visiting his oldest friends and family, seeing old sights and exploring new ones, all the time paying close attention to his energy level and needs and eating “medicinal” steak and kidney pies and lovely British beer.
London, bangers and mash with long distance faces and urban sketching by Big Ben.
The Liverpool Lad goes home one last time.
Ever the student of history… museums of wondrous objects…
The simple joys of a small town British country fair.
“Medicinal” steak and kidney pies and lovely British beer!!
Urban sketching in UK.
Our last little trip was to join friends in Palm Springs in November where we even got to visit the charming Vargas Circus but he was declining fast and he knew when he returned home he’d have to start on oxygen as he couldn’t manage much more than getting from the bedroom to the kitchen to the patio to the car. Never one to give up, he enjoyed his last trip out, all the time planning another getaway to Puerto Vallarta in January!
As soon as we got home from Palm Springs he started on mobility oxygen as his scarred lungs were not up to the task of even minimal daily life. In early December 2016 after a lot of careful thought on his part, he filled out the application form for MAiD, something that must be done when the applicant has their full mental capacity. Trust me, it is quite a process, it is not taken lightly in any way by any of the parties involved.
Two close friends were invited over one evening to witness his signature on the application. Both friends had their own journeys with terrible end of life situations of loved ones who may have chosen MAiD had it had been available. The very strict MAiD application form must be filed well ahead of any action to be taken. It is not a commitment to take action, merely the request for the right to do so.
Dennis’s oxygen use increased and his daily commute from the bedroom to the living room to the dining room became his whole world. Family and friends came by in real time and online from the other side of the world.
In December, his doctor, a down to earth fellow with a great sense of humor, said in reply to Dennis’s question about end-of-life, “Well, you might decide to set a date in a few months and invite the friends and family around and say this is when I’m choosing to go. It’s up to you. You’re the one who’s going to decide, we’re just here to help you in whatever you choose to do.”
The wonderful palliative home care team came daily to check in on us and his drug needs except when there was too much snow to come. Blessedly, pulmonary fibrosis is not a painful disease like many others and the morphine that he took was for relief for breathing and anxiety rather than for pain. We were very grateful for all the carefully monitored drugs he was able to have that make his experience the least stressful and painful.
I started to wheel him around the room on a wheelchair, not because he could not walk BUT good words of advice were – think of your energy as a bank account of only X dollars a day and think carefully how you want to spend those dollars. Do you want to spend your energy getting to the table or being at the table, enjoying the view, chatting, reading etc???
After our application for MAiD, we had a Skype interview with the specialist in Vancouver. She interviewed us in the comfort of our own living room. She could see that Dennis had full mental capacity and that I was in compliance. As his medical condition did indeed have an imminent expectation of death, he did have the right to choose medical assistance. She had good words of advice for me too saying his journey would be shorter and mine would be longer, which is so true. While Dennis had to prepare for his death, I also had to prepare for my own life afterwards.
As we were confined to home, eventually a second and now local doctor in our small community (separated from Vancouver by a 40 minute ferry ride) came to the house to give him the required second specialist permission. Throughout all these consultations, other end of life paths, natural or drug enhanced, were clearly laid out if he did not wish to go ahead with the medical assistance in death when the time came. All the options were made very clear to us with NO pressure towards any direction.
From March until December he had been taking special medication for his pulmonary fibrosis which may indeed have slowed its progress. We’ll never know but we were very thankful to be on that medical study and have it covered $$$. As it was still in study phase, it was provided free, delivered to the door once a month and included telephone support anytime we wanted it. As always, we were very grateful to live in Canada with free healthcare including the palliative care home nurse visits for his final 3 months once he could no longer leave the house.
By mid-January 2017 he was on oxygen 24 hours a day. This was such a relief after using only on-demand oxygen since November. That was wonderful as he didn’t have to be stingy with it and save it only for the special need times… like standing up and breathing, something we all take for granted.
Eventually in late January 2017, his daily activity was limited to the bedroom. Friends came to visit daily which was so wonderful. He held court in the bedroom, with guests on the bed and on a new chair he eventually revealed to me that he had bought six months earlier especially for this purpose, ever the planner. He had a good appetite and was most comfortable just lying down or sitting up in bed reading.
With what turned out to be a full calendar year of notice, we were able to digest this inevitable change in our family. I was able to prepare for his passing ahead of time in so many ways, not the least of which was getting all the legal obligations taken care of. I also ticked away at his obituary and created a wonderful slideshow of his life which I was able to show him just before its final edit. He certainly enjoyed seeing himself passing from baby to adult to the tunes of The Beatles from his beloved hometown Liverpool.
Over the last weeks, we had the time to talk about every little thing... like what would you like to wear to be buried in, what would you like your headstone to be like, what kind of casket would you like? In fact, about six years earlier he had somehow mentioned to me that of course he wanted to be buried not cremated, something I had not known in spite of being together for more than 30 years. What did I buy him for his next birthday present? A family burial plot in the local Seaview Cemetery of course. If you want to be buried you must make a plan as burial plots are not unlimited. It had given me peace of mind over the years driving past to life drawing in Sechelt and knowing that’s where we’ll be lying one day when the time comes.
What about the casket? He said he’d always wanted a simple cedar box. When the time came for me and my son to go down to our local funeral home to look at caskets for the first time in our lives, it was quite an otherworldly experience. They had a nice simple pine one, the closest thing to cedar that they had. An Irish friend dropped in with some Guinness two weeks before the end and mentioned to me on his way out that Dennis was actually quite upset that he wasn’t getting a cedar box but he had not expressed that to me.
OK! That was a Friday afternoon. I got online and searched around quickly and found a lovely plain cedar casket in Richmond and bought it online. Got to love that online shopping when you can no longer leave the house! Good friends went over to pick it up in the truck the following Monday. Dennis had only just recently declined in energy and had only just passed the time when he may have been able to enjoy the humor of seeing the casket brought through the front door and maybe even been able to enjoy taking some comical photographs in it but this time had passed and the casket was discreetly walked around the back of the house and placed on my studio floor downstairs.
Had he thought about burial clothes? YES! He wished to be buried in a long night shirt – like Ebenezer Scrooge, I asked? Gee, how about something else as I may not be able to get that? His second choice was a simple hemp shirt and hemp pants. That would be easy and we agreed on that.
Paper mockup of headstone.
We even sketched out rough plans for his gravestone and decided what color and shape it would be.
Eventually when his life was reduced to only the bed and the one step it took to stand up and pivot to use the commode, he decided that his natural end was coming swiftly. While WE would never be ready for him to go, HE was ready. We set the appointment for about two weeks time and all the important characters in our life came in waves and made their final visits, some knowing his exit plan and date and some not knowing but it was evident to all that these visits would be their final visits with him.
He’d always wished to have his celebration of life, his wake, at our local Canadian Legion Hall with “a case of whiskey! A full case of whiskey! And don’t cheap out on it!” Well, I’ll see what I can do I said. I went to our local Legion to inquire about having his celebration of life there perhaps in a month as he was going fast. Oh yes, they said, no problem at all and would we like to become members? Yes, I did want to become a member and was pledged in on spot in their office.
A few days later we got a phone call to ask if Mr. O’Brien would be coming into the office to pledge his allegiance to the queen and become a member? I said no, he’ll only be coming to his own celebration of life in about one month as he’s pretty much on his deathbed. They did not miss a beat and instead offered to come to the house and join him up there! Dennis leapt at this offer! This was unexpected and very meaningful to all the family members who had gathered that weekend as it would be their last weekend with Dennis. Of course, the two lovely Legion Ladies did not know the scheduled timeline but even with a completely natural death it was obviously imminent. In all honestly, we probably only cheated a natural death by literally days as he was quickly dwindling away.
He was a pioneer in many things in his life and a catalyst for many others to achieve greatness in their own lives. He was a pioneer in his passing too as he was the first here on the Sunshine Coast to receive MAiD, medical assistance in dying at home. Several came as witnesses and students of the process which is going to be different in every home, every family, every case. The patient must have their full mental capacity and be able to answer the question on the day that they do wish to proceed as there is no obligation even at the last minute to go through with it if the patient changes their mind.
On the final morning, our appointment with the medical team was for 10 o’clock. Our two sons shared their last moments with their beloved dad and left the room, not wishing to be present at the end. Of course, I was not going anywhere, something which amazingly he seemed surprised at. We’d been joined at the hip since we met nearly 39 years earlier and of course I was not leaving him alone for that final walk and final breath without my hand holding his.
The question was asked at the bedside again and he answered yes, he did wish for this. The whole process is extremely respectful, quiet, calm, painless and tender and takes about 15 minutes. We did not have to experience the potential of his falling from his muscle wastage or the noise and drama a week in the hospital at the end would have delivered. Instead he had the peaceful and well-loved surroundings of home. Who could ask for any better way to go, calmly and pain-free in the family and home with your loved ones?
He was only the first to go at home here on the Sunshine Coast and most assuredly not the last. For certain irreversible medical conditions, MAiD can provide a most thoughtful respectful passing possible. It’s not for everyone and it’s not for every condition or situation but we were blessed to have it in our tool kit of choices, for dying at home, for death with dignity.
He faced his passing boldly, frankly and with full sense of humor intact ever since he got his diagnosis one year earlier right up til the end. That is the positive attitude that he was able to take and the big lesson here. We were very grateful that his disease was not a horrible painful one but a subtler one, quietly sneaking up on him without the big noisy pain and suffering that other diseases bring with them.
I’m sharing our story, a story of love and gratitude, told through words and art. I offer it as a beacon of joy and light in the darkness, an example of living life fully and joyfully in the face of sadness. If our journey can help any others along the way then sharing this with you has been worthwhile.