The term “palliative care” makes most people cringe. Dying and end-of-life come to mind: subjects that are not pleasant to openly talk about, or even consider. But this week – National Hospice Palliative Care Week (May 5 – 11), I’d like to raise awareness of the importance of palliative care and advance care planning, and how they can make the journey smoother for the person receiving the care, as well as their family.

The evening of August 7, 2002…

It’s been more than 10 years, yet I can still vividly recall the exact moment I received a phone call and learned from my mother that her doctor had confirmed a diagnosis of colon cancer. The days that followed are not as easy to recall because they were a whirlwind of appointments with her doctor and oncologist, conversations with my two younger sisters (one on the other side of the world in Australia), and my Dad – “Are you absolutely sure?” “Has there been a mistake?” “Is Mom’s dementia a factor?” Once the whirlwind subsided, the situation was clear to all of us – Mom was in stage 4 of colon cancer with a life expectancy of no more than 3 months.

I won’t try to put into words the emotional – and even physical – pain that you experience as you try to process a situation like this. Instead, I’ll move right to the importance of palliative care. Despite feelings of self-doubt, and worry that I was moving our family, and especially my mother, too quickly through the end-of-life process, I contacted the palliative care unit of our local hospital. I poured out my questions and concerns, and then felt a weight lift from my shoulders as the counsellor patiently explained what care and support was available, and how my mother could receive it in her home or in the palliative care unit of the hospital. Then the counsellor scheduled an appointment to meet with me and my parents at their house.

Her gentleness and clear explanations resulted in both my parents saying, “She made us feel so much better.” Over the next three months, until my mother’s death on November 19 in the hospital’s palliative care unit, the counsellor and the Doctor assigned to our family were a source of information, guidance, consolation, pain management, late night visits, support, and so much more.

Eight years later, my father was living with vascular dementia in a long-term care home and was weak with a second bout of pneumonia. The staff suggested to my sisters and me that palliative care should begin. We were sad to acknowledge that the end was near but knew that palliative care meant that the focus would be on keeping him comfortable and pain-free. Having had conversations with him during the time of our mother’s illness and the years since, we knew that we were honouring his wishes.

In reality, end of life is very rarely as portrayed in the movies, with teary discussions about death and dying out in the open, or the family gathered around to hear the last words of the person. Use this week to make sure you avoid a situation where you and your family members don’t know what you want at the ends of your lives, at a time when you may be unable to make decisions about your care – having the conversation ahead of time can alleviate a lot of worry at a time of tremendous stress.
Joan Rocha
Chief Marketing & Communications Officer
Alzheimer Society of Toronto