Kathy shared her story in March 2020.
On August 4, 2019, my husband, Dr. Brian Cason died peacefully in his bed, just like he wanted, because of his option to utilize California’s End of Life Option Act.
He was diagnosed with ALS just two years prior, in October 2017, and he knew from the beginning that he wanted the option of medical aid in dying. We had talked about it in the past before it even felt relevant to our lives, and Brian had shared, “When the time comes, I’m going to look into this because I’m not going to be a burden to you and I’m not going to be a burden to myself. I want to have the option to make my own decision.”
Neither of us understood very well that you had to jump through some hoops to access medical aid in dying. As Brian’s health continued to deteriorate, in March 2019, once it was clear that Brian only had six months or less to live, we talked to his ALS doctor to start the request process. By this point, Brian was talking through the computer and he told her that this is what he wanted to do. She threw up every roadblock imaginable. She tried to talk him out of it. I was really disappointed. Brian did not waiver and she finally agreed to move forward with his wishes.
Fifteen days later, we were due back to continue the process, however, his doctor had scheduled a 9 a.m. meeting with palliative care and a second appointment for that same day three hours later. I fought her on the scheduling and requested two appointments back to back, stating, “You are not supposed to be making this more difficult. You should be jumping through hoops to make it easier because he’s dying.”It was hard enough to get Brian from one place to another, much less twice in one day. She would not bend, so we complied.
At the second appointment, Brian’s ALS doctor confronted me and told me that I seemed angry. I, very justifiably, replied, “I am angry. This has been living hell. I’m watching this man, whom I love, deteriorate and waste away in front of my eyes. I can’t do anything to help him and you have thrown up roadblocks at every opportunity. You’ve made this situation much more miserable than it needed to be.” His doctor had no compassion and obvious bias toward those choosing medical aid in dying. It was incredibly upsetting.
Then, even though we had pre-paid for Brian’s medication, the pharmacy did not have his medication ready at the time of his appointment. Another three hours would pass before we could pick that up. I went back alone to pick up Brian’s medications.
Finally, Brian felt a sense of relief that the process of acquiring the medication was over. He was finally in control of something. He knew he wasn’t ready to die in March when he got it, but having it at home allowed him to know that when he was ready, we weren’t going to have to struggle to get it.
In April 2019, I asked Brian if he wanted me to start staying home and he said no. Brian retained much of his independence through the very end and we had hospice care at home to help. One day, though, he fell while I was at work. A couple of days later, we made the decision that I should start staying home.
My time at home allowed us an opportunity to say the things we wanted to say to one another and for people to stop in to say goodbye. Over the past year, he had already lost his ability to talk, lost some ability to breathe, and Brian required a kangaroo pump to feed himself through the feeding tube in order to maintain any level of nutritional intake.
On the day that Brian died, we had friends, my daughter, and some of his colleagues join us at home to say their goodbyes. He had served as the chief of the anesthesiology department for 23 years. His work had meant a great deal to him and he was well respected and admired by the people he had led.
Brian prepared his medication and consumed it through his feeding tube. I settled him in bed, one of our cats laid next to him and didn’t budge, and he went to sleep. Within a couple of hours, he died. The experience was very matter of fact. Brian was ready to go. He was comfortable with the decisions that had been made.
There was never any doubt for us that this was a good plan. Brian’s mind was at 110% until the day he passed away. He had watched both his parents suffer prolonged deaths, filled with agony for them and for the family. He didn’t want to go down that path and he also didn’t want to put me through it. We recognized the fact that Brian’s doctors weren’t going to pull a rabbit out of their hats. There was no chance he was going to get any better. While he could have delayed his death, delaying it wasn’t going to yield a different outcome.
For Brian to go out on his terms at a time when he was ready was very comforting for me. I have been a nurse for 40 years and have experienced the “anything at any cost” mentality from families, not taking into consideration what the patient was going through. I never wanted Brian to be around just for me. I only wanted to do what was best for him. I miss him terribly, but it gives me great comfort to know I supported him through a peaceful death even through an incredibly difficult illness.
Brian, as a physician, and I, as a registered nurse, had an unfair advantage of understanding his illness and navigating the healthcare system, however, we faced unnecessary burdens in accessing California’s law.
Medical aid-in-dying laws should be easier to access and doctors should exhibit professionalism, and support to their patients wishing to utilize these compassionate laws. This decision is already a hard one; medical providers need to avoid making the process even more painful and onerous.
