This past long weekend had me thinking about the End-of-Life-Care Bill (Bill 52) that was passed last year in Quebec and hoping that other provinces will consider following suit. I would never have even given it a second thought if it wasn’t for seeing my own father’s declining health and witnessing my husband’s father and my dear friend’s father’s long and agonizing deaths. When the prognosis is terminal you are left with minimal choices on how you would like to die and they are all very discouraging for both the patient and the family members. Some may believe we have the freedom to choose how you die when you have been diagnosed with an incurable terminal disease but that isn’t necessarily so.
I was listening to the Roy Green Show on Saturday afternoon during my drive in the city. The fifteen-minute segment that I caught on the radio was Roy’s monologue regarding his wife’s death and a discussion on physician-assisted deaths for the terminally ill. The theme seemed to continue as a good friend of mine said she was back in Saskatchewan. She flew in from B.C. for a special family event and was staying with her mother an hour away from where I lived. She had only moved away six months ago but I missed her terribly. I was thrilled when she was able to squeak in a coffee with Corine, another friend of mine, and me. We ended up on the topic of our fathers as we all lost our fathers within a two-year span. My father died from a fatal heart attack this past October and my dear friend had lost her father less than three months after. Her father was diagnosed with a very aggressive and painful cancer – bone cancer. She watched him die in insufferable pain and wished he could have passed on in a more peaceful and dignified manner. I felt I was the lucky one out of the three of us, or more so my father. God had granted him a death with little suffering and anguish. It was coming as we could see that his mental and physical well-being was deteriorating. My siblings and I were in the midst of planning for home care support when he his heart stopped while walking from the living room to the kitchen.
Our three fathers all had strong characteristics, wills, opinions and most importantly ideas how they wanted to leave this Earth. My dad told me years before he became unwell how he was going to go on his terms. In the past year and a half I had the sense my father wasn’t sharing everything with us in regards to his health probably thinking it would somehow protect us. His continuous weight-loss, the slurring and repeating of sentences and then a fall had me forcing him in my car to bring him home with me so I could pinpoint what was going on. During his stay with me he was very unhappy not being in his own environment, being cared for and worried about. He told me he was not going to be a burden to anyone. In fact, he told me years ago when his father was struggling with Alzheimer’s. It was difficult for my father to see his father that way – 70 pounds and non-verbal. My dad told me soon after my grandfather’s death that he would never allow himself to “get to that point”. He said if he ever got a sniff that he was losing his mind he would deal with himself “behind the shed.” I never doubted that he would but told him I didn’t want to hear talk him like that. When I got the phone call in October that he was found passed away on his farm, I immediately thought he was found behind the shed. It is such a strange thing to be relieved to hear that your father had a heart attack. I felt relief, guilt, shame, grief, anger all at the same time. This is minimal compared to those who have to endure seeing their loved one day after day tormented by pain and the loss of memory and faculties.
Anyone who has experienced having to advocate for a loved one in the health-care system knows that the system is inadequately set up to receive patients needing long-term care. Palliative care professionals can only do with what they have and are mandated to follow procedures when caring for the terminally ill. Our system isn’t necessarily the best environment to live out your last dying days. It is not equipped to provide a comfortable, nurturing and attentive place to die which is why many choose live out their last days at home. This leaves the family members trying to alleviate the pain as much as they can and making difficult decisions regarding providing life supports.
As Quebec policy analysts are developing policies in their legislation in order for the new law to be in effect it will state that the patient would have to have a vulnerable illness and be in an advanced state of irreversible decline in capacities. The patient would also have to demonstrate that they are in constant physical and psychological pain which doctors cannot treat with medications. During our discussion, when we moved from coffee to wine, we pointed out that we all have relieved our sick and dying pets from their suffering in the last few months via euthanasia. Our dogs were able to leave this world peacefully in the comfort of our arms. The laws seem to have more compassion for our pets than our family members.
I understand the controversy regarding legalizing medically-assisted death, especially among physicians. I know that not everyone will agree or approve of the right to die movement, however, I suggest you put yourself in a position of curiosity and ask your loved ones what their wishes are. I know I do not want my ending days to be in misery and pain and have my children endure witnessing my tortuous death. I now understand what my father was trying to say to me even though at the time I didn’t agree with him or want to hear it. Father’s Day is going to be a tough one this year.
“We have to stop viewing death as a failure and focus instead on a good life with a good death.”
– Andre Picard, Globe and Mail Health Reporter