Hospice Palliative Care Stories

My mother died on December 8, 2024 from congestive heart failure following a massive myocardial infarction and stent of her LAD. She never smoked but did have severe aortic stenosis prior to her MI. She rapidly declined and had only days or weeks to live according to the acute care cardiologist on her ward. So, palliative care was consulted and she eventually got switched to comfort care. I knew she had very little time to live and she was already suffering very distressing symptoms, so I read a great deal in order to try to make sure she was well cared for while dying. I had hoped she would be transferred to palliative care but there were no palliative care beds available in all of Winnipeg and a lengthy waiting list, which would prioritize single people in the community, so that was not an option. Also, my parents both strongly wished for her to die at home.

In my research, I learned that the last days and hours of life when dying with congestive heart failure usually has an even higher symptom burden than dying of cancer and my mom had already said numerous times that she would rather have horrible pain than feel like she was suffocating with breathlessness. She also had horrendous nausea and some abdominal pain that contributed to her misery. She basically didn’t sleep because of increased breathlessness every time she started to fall asleep because she consistently would go into periodic breathing, which, after a few days, turned into the Cheyne-Stokes pattern of breathing. She also experienced horrible nausea, which was much worse if she tried to eat small bites and which usually also precipitated abdominal pain and even more Cheyne-Stokes when fully awake. She found both the nausea and breathlessness awful, but the air hunger was especially terrifying and anxiety producing, so much so that the hospital provided a full-time aide overnight.

Things improved somewhat once she switched to comfort care and was prescribed medications to help with the breathlessness and nausea/abdominal pain. However, many of these medications were given first by IV and then subcutaneous line when her IV failed and I knew neither of these would be available in the community. She stopped experiencing the abnormal breathing patterns and was able to sleep a bit better. Knowing that she would not have an IV or subcutaneous line at home, I started trying to make sure she would have alternative and effective medication delivery for home, especially once the pill form would no longer be effective. I was concerned about her gut perfusion issues that seemed to already be present and swallowing difficulties that I anticipated would come. She had no appetite at all and developed severe nausea, abdominal pain and would go into Cheyne-Stokes pattern of breathing with even minimal amounts of food intake.

To make a long story shorter, I had to push to get liquid Hydromorphone, sublingual Lorazepam and quick dissolve Ondansetron which were absolutely essential in her last hours. I cannot fathom how horrendous things would have been without those medications. I’m guessing there was other medication that would have helped make her last days much more comfortable that we were not made aware of. I would also have much preferred to have a higher dose of Hydromorphone at the end than the 0.5 ml every two hours where the strength was 1 mg/ml. From what I read, this is a very small starting dose and we needed to give 1.5 mg within a couple of hours at the end in order to give her some relief and I would have preferred even more but my family wasn’t wanting to go above the prescribed amount, despite her extreme distress. I believe there needs to be not only guidelines provided for families on which medications to provide while dying but also permission to give enough for their loved one to be comfortable. In the case of someone dying of congestive heart failure, that likely means they would need to be sedated once their air hunger became intolerable.

Since we have an aging population and advances in cardiology mean more people are developing congestive heart failure, that there needs to be a much better approach to help these people when they come to their last days and hours of life. I realize the course is often up and down, but when it becomes clear that they are nearing the end of their life, that they and their family/caregivers are given better information on expected signs and symptoms and how to relieve those symptoms in the home as they die.

Elizabeth K. Manitoba

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