This is the Face of Palliative Care

Welcome to my family.? This photo was taken for my birthday in May of 2021 – 5 days before my dad died from a terminal cancer diagnosis. This is the face of palliative care – Ken surrounded in his home by many of the special women in his life.

My dad had an expression … “Sandra – we’re all going the same direction”.?? The problem is – no one wants to actually talk about the process of dying.

So in honour of World Hospice and Palliative Care Day, I want to socialize what palliative care is all about and in a very personal way.? I also want to de-mystify something called Medical Assistance in Dying (MAiD) - which my dad actually chose for his exit door from life.

Palliative care isn’t about the process of dying per se but more about providing the best possible conditions of life for those with a terminal or life-limiting condition.? Many studies have shown that early intervention can actually improve quality of life and reduce patient symptoms.? This type of care is also meant to support patients and their families emotionally and spiritually through the journey … which more and more happens at home.?

The Canadian Institute for Health Information (CIHI) published a report in April of 2023 with findings that in the last five years, more people are both receiving palliative care and dying at home.? But there are still some serious challenges in the numbers as outlined by the statistics from 2021-2022:

1. Only 58% of the people who died received some form of palliative care.? Of this number, only one-third received palliative care in a home setting.? Two-thirds of them received palliative care in a hospital setting – one wonders how this might even be possible given the nursing shortage.
2. Where you live matters as to whether you have access to palliative care.? And while the CIHI report includes statistics that indicate it’s harder to access in rural areas, there are differences between cities as well.? John Cargill wrote an article in August of 2020 called “The Postal Code Lottery of Palliative Care” comparing two vastly different circumstances where a young woman in Windsor received amazing care and a senior in Toronto died in hospital without any palliative care.?
3. The kind of disease you have also matters in terms of access.? More than three-quarters of cancer patients receive palliative care but only 40% of dementia patients receive palliative care in their last year of life.
4. In the end, only 13% of Canadians died at home.?

Yes, in the end, we’re all going to die and in Canada, when faced with a terminal illness, we now have choice in how this happens.

In 2021, there were 10,064 assisted deaths in Canada (3.3% of all deaths) … my dad was one of these people.? This number represented a 32.4% increase from 2020 and is projected to jump another 35% in 2022 to 13,500.? Of these people, more than 80% of them had lost the ability to perform activities of daily living or engage meaningfully with loved ones.? Over half of them thought dignity was lost or they had/feared uncontrollable pain.

So what actually happens when someone chooses an assisted death?

My dad was given only 6 months to live and in fact, declined very quickly after that prognosis.? An amazing palliative care team was assembled to keep him at home, per his wishes.? Once the initial conversation happened with his doctor, he had to be independently assessed by a second doctor as to his wishes and state of mind.? Additionally, a dear family friend was asked to sign off independently that Dad was requesting this outcome without family pressure or influence.? Once the paperwork was completed, it went into a drawer and the focus became life, and time, and keeping him comfortable.

The time came for him to choose a date.? He wanted to wait until after my birthday but before his a few weeks later.? Once the date was selected, his grandchildren and other extended family came to say goodbye however they wanted.

That morning, I was gathered at my parents’ home along with my two brothers.? An amazing Spectrum nurse prepped the medication and started the IV line.? Once the doctor arrived, the whole process took just a few minutes.? Without question, this was the hardest thing I’ve ever had to watch … but it was a peaceful way for him to die – and it was on his terms, in his home, and without pain, surrounded by his family.

In April 2022, Dying with Dignity conducted a poll on how Canadians felt about this issue of assisted death.? More than 85% of Canadians support the right to choose an assisted death.? This number jumps to 90% for people over age 55 – perhaps the closer you get, the more real it becomes?? And remember that just because people support this choice doesn’t mean they would choose this outcome for themselves and that’s ok.

Celebrate the lives lived, the legacies left, and the experiences that shaped the lives of the people they loved.

Most importantly – just have the conversation with your loved ones about your wishes and theirs.? Don’t wait until its too late.