Hospice Palliative Care Stories

My husband, Michael, had a complex cancer and end-of-life journey. This was partly because he had what oncology called, “very low volume, bad location” lung cancer which was only visible in one vertebrae of his spine (after surgery fully removed the lung tumour.) Such a tiny amount of cancer in his body, but wow, it caused so much agony! As a survivor of severe childhood abuse, Michael had a very high pain tolerance, but the tumour was pressing on nerves and his spinal cord in the thoracic/rib region, meaning it affected his “core” and radiated pain. This, coupled with his body not responding to any of the medications, meant that he suffered unusual and severe metastatic bone pain for nearly two years, right up until his death in late October, 2022. I couldn’t crawl into bed with him or hug him for most of the last two years of his life–nor as he was dying.

Because of the complex pain, he was under the care of the hospital palliative team as an outpatient for 16 months while also undergoing cancer treatments and as an inpatient for a further five months. They tried everything in their toolbox. Nearly all of his palliative care practitioners and the acute pain team said they had never dealt with such a difficult case in their careers.

Michael became paralyzed from the ribs down (still with pain) for the final four months of his life and died in hospital, but never in a hospice bed, because there were/are only ten hospice beds available in our catchment area of 500,000 people (problem #1). It’s not just about physical beds, it’s also about equipment and staffing. Luckily, many people, like Michael, wish to die at home, but we were advised that there wasn’t enough community nursing/palliative care support to safely bring him home, either (problem #2). It was only through my hospital connections and strenuous advocacy (problem #3, since most people don’t have these advantages) that he was moved from the acute-care hospital to a complex medicine unit at a longer-term hospital for his last two months. We were told repeatedly that he wasn’t dying soon enough to qualify for one of the precious hospice beds, but he also didn’t qualify for a bed at the longer-term hospital because he was dying too soon. These situations are less than ideal for our loved ones and were not the kinds of issues I wanted to be spending so much of my time trying to manage, when my husband was in the last stages of his life.

Despite our acknowledged privileges and many kind staff, spending the end of his life in hospital was also particularly difficult for Michael (problem #4.) As as child, he had been at the mercy of abusers at home, in foster care, in residential reform school, and while homeless–all before age 13. Living in a hospital while newly paralyzed from the ribs down and taking significant meds to try to relieve the worst of his pain left him feeling extremely vulnerable. Every night I went home during those five months was a scary scenario to be conquered. Every new staff member providing intimate contact was a trauma re-activation to overcome. I am passionate about improving trauma-informed care across the cancer and palliative space, but even the basics of more hospice beds, community palliative care resources, and education and support for families is a level we have yet to reach, especially in smaller centres and rural Canada.

Christine F. Ontario

Help us show policy-makers and health care leaders the impact of quality hospice palliative care, or lack thereof, on families in Canada through your lived experiences.