Marj’s story: My husband got the death he wanted – but getting there wasn’t easy
Personal Stories | November 30, 2018 | Dying With Dignity Canada
The option of a medically assisted death can be a source of hope and relief for Canadians who are suffering intolerably as the result of a severe medical condition. But certain elements of our assisted dying rules are harming the very people they’re meant to protect.
Take Owen, an Okanagan Valley man who was diagnosed with a rare melanoma cell cancer in August 2016. Owen and his wife, Marj, successfully advocated for his right to medical assistance in dying (MAID) after some resistance from his medical team.
But going through the rigorous legal and medical process of being assessed and, later, approved for an assisted death didn’t bring Owen and his family total peace of mind. In fact, he faced an additional burden once he was found to be eligible: the law’s requirement that he have the capacity to consent at the time of his MAID procedure. Owen, whose tumour was spreading quickly to his brain, was at high risk of losing capacity.
He spent his final days of life anxious and afraid that he would lose his right to an assisted death, his wife writes.
My husband Owen’s journey with cancer and, later, with medical assistance in dying (MAID), started in July 2016, while on a road trip at the age of 60. He had a nosebleed that took longer than it should have to stop. The nosebleeds continued to plague him off and on for the next few weeks.
On August 14 — our 40th wedding anniversary — he noticed a lump inside his sinus, on the edge of his nose. His GP put him on antibiotics, thinking it was an infection. But when it didn’t clear up by the beginning of September, he was referred to an Ear, Nose and Throat (ENT) specialist. The ENT specialist was thorough and quick. Within two days of his first appointment, Owen got a call from the doctor, who asked Owen to come in right away for a biopsy.
Although we were ready for a diagnosis of possible cancer, we were not prepared for the tests to come back showing that Owen had a rare melanoma cell cancer that had started on the inside of his sinus rather than on the outside of the skin as 99 per cent of them do. He went the next day for a CT scan of his head and, later in the week, a chest x-ray. The ENT did significant research into plastic surgeons capable of performing the tricky surgery that was required to remove the tumour. As luck would have it — we had to find luck somewhere, I suppose — one of the two potential surgeons in the province worked in a nearby town.
Owen enjoyed sunrises and sunsets, and he loved being near water. The Okanagan Valley was an idyllic place for him to live.
Again, we were met with the most professional, skilled, and caring plastic surgeon we could have asked for. He carefully walked us through the proposed surgery. Owen’s nose and any affected bone structures and sinus areas would be removed, the doctor said. His nose would be rebuilt by taking cartilage from his ear and skin tissue from his head, which would be flapped down and remain attached to the donor area until it was re-integrated onto the nose in a second minor surgery. The doctor further explained that the surgery would take approximately three to four hours and require six weeks to heal. After this, doctors would do radiation in the area just to make sure all the cancer cells were killed. According to the doctor, Owen’s only chance of survival was this surgery.
In hindsight, we should have asked for a full-body scan to be done then, prior to this major surgery. Had we insisted, we would have seen that the melanoma cells had already spread to Owen’s back and liver. While he might have still chosen to go ahead with the surgery, I think he likely would have decided to live out what time he had left to the fullest, instead of what was ultimately a painful, life-altering surgery.
It was at this point, though, that Owen first brought up medically assisted death. It was very new, as the laws had only just been changed in June 2016 to make it legal in Canada.
In the end, the three- to four-hour surgery turned into an eight- to nine-hour surgery, as doctors discovered that the cancer cells had spread farther than anyone had predicted. While the doctors thought they had been able to remove it all, it had been an extensive and difficult surgery. Owen started his healing process, during which he had a lot of time to think and reflect. He was in a lot of pain, which became his reality from the day of his surgery until the day he died. During the healing period, we saw the radiologist at the cancer clinic, who described the radiation he had planned for Owen. It was scheduled to start the beginning of January 2017.
Becoming Owen’s advocate
In the first week of December, Owen was sent for a full-body scan before radiation was to start and was called in for an emergency appointment with the radiologist the day the results came back. The cancer had spread throughout most of his body so there was no sense in doing the planned radiation. It was then that we knew his time was limited. We just didn’t know how little time he really had.
Owen spent many hours walking his cherished golden retriever.
We started talking more seriously about medically assisted death for him as an option. Owen was a very independent, thoughtful man who lived his life to the fullest. We had seen a close friend pass away from melanoma in 2001 and there was no way Owen wanted that type of death for himself, or to put me and our family through it. I made an appointment with Owen’s GP to see if I could get some information and Owen started to investigate online to see what was involved in requesting the procedure.
However, when I met with Owen’s GP, he only wanted to focus on how he would keep Owen comfortable in palliative care. I explained that both Owen and I were already well informed, and if Owen was going to remain his patient, he needed to get on board. The one important thing I did find out that day from the GP was that, at the time, assisted dying was not allowed in the hospital or at the hospice centres in our area. I knew then how important it was going to be to advocate for Owen’s wishes.
After much research, Owen was able to talk with someone who could explain the MAID process to us, including the doctor interviews, paperwork, and timelines that needed to be completed. At that point, the paperwork had not even been fully developed and was not available online. Owen had it emailed to him.
The first step was to have two people who had known him for some time, and were not going to benefit from his estate, attest that he was of sound mind and was aware that the procedure would end his life. These independent witnesses are a requirement in Canada’s assisted dying law. That was a tough day for our friends, and I think continues to be to this day. All who knew him well knew what he was up against and what he wanted to do, but it is nevertheless a haunting decision to sign your name to a document you know will eventually end the life of your friend. This is why I believe more supports need to be put in place for the people who serve as these independent witnesses.
Our family rallied around us during Christmas, changing their holiday plans to come and be with us. Even though Owen was on some fairly high meds for pain by that time and needed lots of rest, he was so happy to still be able to snowboard for a few runs each day. Three of our grandchildren and our son-in-law enjoyed being on the mountain with him over the holidays. It was a good time, and it was the last memory our grandchildren have of Owen.
In January, the cancer clinic started Owen on a new drug. The hope was to extend his life by weeks or maybe months. But, ultimately, they were not effective and by this time we knew that the fast-growing tumour was expanding from his sinus into his brain. If Owen lost his cognitive ability, he would no longer be a candidate for medically assisted death. Under federal legislation, a person must have the capacity to consent at the time of their procedure — and there is a mandatory 10-day waiting period after a formal MAID request. (While this may be expedited if a person is at risk of losing capacity, we were not informed of this until much later.)
We knew Owen’s condition could go downhill fast to the point that he would no longer be cognitive. The 10-day waiting period plagued us for months. I made a vow to myself at that time to lobby for a change to the laws surrounding advance requests. No one who knows with such clarity that they want to end their lives should be forced to forego proper pain medication because they fear the medication will cause them to lose capacity. And no one should be put into a situation where they decide to end their lives sooner than they might otherwise want in order to avoid the possibility of losing cognitive ability, and as a result, their right to an assisted death. For many reasons, the laws need to change to allow advance requests.
“I love you and I’m counting on you to help show me”
Owen always tried to stay positive around me, his family, and our friends throughout his whole illness even though he was in great pain at times. But one day, because of the 10-day waiting period, he took me aside in the kitchen and said, “I know the day is coming when I might no longer be able to tell that I’m going downhill fast. You know me as well as I know myself. I love you and I’m counting on you to help show me when that time is if I can’t recognize it.” It was a hard day for me but not nearly as hard as the day in March when I had to remind him about what he asked me that day. It was a terrible time, as we all watched him get worse. We wanted every day, every hour, every minute we could have with him, but not if it meant Owen would suffer because he had waited too long.
The other topic of our discussions surrounding Owen’s death always came back to where he wanted to die. I wanted him to die peacefully at home as there was no option at any hospital or hospice in the area. But being the type of person he was, he said he wanted to die on the beach down the street from our home where we often spent time, so our home would remain a place for happy memories. We decided to roll with that idea. I went to the local funeral home and told them of Owen’s upcoming planned death, informed them where he wanted to die, and asked if they would work with us in picking up his body immediately from the beach if they knew ahead of time when the death was going to happen. After some consideration, they agreed, although I think the funeral director did lose some sleep over it in the end. Owen’s was the first medically assisted death they had worked with, and to want his body picked up off the beach was a bit of an extra hurdle.
Okanagan Lake at Winfield in Lake Country, British Columbia. (Credit: Adam Jones)
By February, Owen was removed from any further therapy at the cancer clinic. They were going to do some radiation to reduce the size of the tumour and minimize the pain in his head but by the time they got the radiation mask made, the tumour had grown so fast the mask would not fit anymore. The two radiologists in the room said he might have about four weeks to live. I said, “You all seem to be forgetting that he has continually said he is going to end his life with the help of the MAID program. How long is it going to be before he will likely want to go ahead with that?” Both of them said “likely two weeks.” I will always be grateful they were both finally honest with Owen so that he could move ahead with his plans.
Moving forward with his MAID request
After this appointment, and with the 10-day waiting period hanging over us, Owen called to arrange the two interviews that needed to be done by doctors in order to determine his eligibility for MAID. Our families were told the end was near and our children came the next week. When the interviews were done in our home by the doctors, two of our three children were there with us. It was important for them to hear what their father wanted and why, and to understand the process and what they could do to support Owen’s decision.
I must say that both the doctors were incredibly caring and compassionate, and having reviewed all his doctors’ reports, were aware of his condition. They let him know exactly what drugs would be administered, how they worked, and approximately how long it would take to die. Finding out at that point that he would not have to wait 10 days was a huge relief as it gave him flexibility to choose a date. But he still needed to be cognitive to sign the papers on the day of his death. This again is where I would have liked to see him be able to give an advance request. When he told the team that he wanted to die on the beach, they needed some time to work out the logistics but were very supportive.
By this time, the nurses from palliative care were visiting the house one to two times a day and we were administering his meds more frequently each day to control the swelling and pain. He was sleeping for major parts of the day, was hardly eating, and was saying his last goodbyes to those close to him as his energy allowed. The family took turns by his bedside at night to administer whatever he needed.
Owen loved camping. It was fitting, then, that his final moments were in a tent, surrounded by his loved ones.
In the middle of his last week, Owen knew he wanted to set the date for the next Monday. The doctor was called so she could order the drugs needed and make the arrangements. The kids searched for and found a large tent with openings on each end so Owen would be able to sit in comfort while looking at the wonderful view down the lake in his final moments.
Owen’s final day
By Friday, he was in really rough shape. None of us, including the hospice nurse, knew if he would still be cognitive by Monday as the disease and drugs were taking their toll. Amazingly, though, on Monday, March 6, 2017, he rallied around a bit, refused pain medication in the morning, made a music playlist to listen to as he died, and talked separately to each person who would be by his side during his death. He refused to drive to the beach, wanting to painfully walk the two blocks with me and our dog instead.
The doctor met him outside the tent and they went to the other side where she privately made sure he was cognitive and had him sign his life away. The music started as Owen poured an Irish whiskey for himself, for me, and for the family there with us. We toasted to his life. He sat down with me at his side, the doctor on the other side, and our family surrounding him, as he drifted off peacefully listening to “Fly Like an Eagle.”
Dying With Dignity Canada is immensely grateful to Marj for sharing her beloved Owen’s story. We are grateful that Owen was able to have the peaceful, gentle death he wanted and that he was surrounded by love until the very end.
DWDC remains steadfast in our commitment to speaking out for the rights of suffering people who have been assessed and approved for assisted dying. It is cruel and unjust to continue to force people — like Owen — to spend their final days in fear of losing capacity and their right to a peaceful death.
Editor’s note: When Owen first began exploring the option of MAID — just six months after the legalization of assisted dying in Canada — there were a number of misconceptions about the MAID process and its implementation. Many individuals, their loved ones, and their healthcare providers were unclear about the assisted dying law and its requirements.
It is important for us to remind our readers that the 10-day waiting period starts from the day that the formal MAID request is signed. This reflection period can be set aside if both assessors agree that the person’s death or loss of capacity are imminent.
Lastly, we remind our readers and supporters that people should not wait until the last moment to be assessed for MAID. Most assessors will carry out assessments weeks or even months in advance. This is particularly important if there is a significant risk of loss of capacity.