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Why Palliative Care is a Human Right

Dec 8, 2017 | Uncategorized

The holidays are bittersweet for me these days. On one hand, my heart is so full – I am blessed beyond measure to have a wonderful husband and three of the most amazing children in all the world, so I couldn’t really ask for anything more. On the other hand, even surrounded by such a loving family, there is something – or someone – missing. I am, after all, a daughter – or at least I used to be. At this time of the year, I often find myself remembering my parents, and I have to admit that it’s tough to not have them around to share in my family’s joy.

In April 2000, at only 54 years old, my father was diagnosed with stage IV pancreatic cancer. I was 19 at the time and pregnant with my first baby – a daughter my father would never meet. I spent the better part of the next two months visiting him at my sister’s house. His illness had moved so quickly that, during a two-day visit there, he became too ill to leave except in an ambulance. He didn’t want that. It was hard for us, of course, but there were wonderful nurses who visited every few days to provide guidance and assistance. My father was in good hands because nobody could care for him better than his four daughters. He died in June, shortly after Father’s Day. I was by his side, holding his hand, stroking his forehead, and looking right in his eyes as his soul departed this world.

In December of 2009, my mother fell ill with a persistent cough. It wasn’t until around Easter that she received her diagnosis of inoperable lung cancer. Wanting to be surrounded by family rather than strangers, my mother opted for home care. Since my house was not accessible and my mother’s condo was, she remained at home, but that meant someone having to be there all the time. Two sisters lived too far, which left just two of us to tend to our mother’s day-to-day needs. I had the evening shift, so I’d prepare dinner each night after work and take it to her, with my children and sometimes my husband joining me for the evening with her. There was help during the day but, at night, we were alone. Mom’s illness proved slower and even more grueling than my father’s. She died on the morning of December 12, 2010, surrounded by her sister and her firstborn daughter.

I’m not going to pretend that watching my parents slowly die was easy. I cannot say it didn’t take an emotional toll on my life. With some chagrin, I admit there were times I wished I weren’t responsible for my mother’s care. But, in hindsight, these were among some of the most satisfying times in my life. Evenings with my mom and my dad were difficult, yes, but they were special times. Some of those conversations are deeply ingrained and will remain with me for as long as I live. Though I would give a lot to spend a few more moments with them, the truth is that, at the moments of their deaths, there were no words left unspoken between us. During their illnesses, we reminisced about past times, shared laughs, expressed our love for one another, and even mourned our eventual loss together. They were hard times, but they were beautiful times.

My parents were both proud Canadians.

My dad, a hardworking welder, was born in Penniac, NB (just outside Fredericton). He left home at fifteen and made a new home in Ontario, where he married, raised a family, and worked every day until he fell ill that dreadful spring. His father was a veteran who served his country in the Second World War.

My mother was born in Orangeville, ON., among the eldest of twelve children. She worked hard to raise four girls. We weren’t the easiest girls to raise, either, but I like to think she did a good job. She taught us to love God, respect our elders, help those in need, support one another, always try our best, and be proud of our country. Her father was also a WWII veteran.

Despite access to some of the best healthcare in the world, neither of my parents took full advantage of the palliative care options available to them. They were in the fortunate position of having four children willing and able to bear the load and allow them to make meaningful choices about how and where they spent their last days.

Much of the responsibility for palliative care rests on families, faith groups, and communities. And so it ought to be. There is much to be said about a society whose people set aside their own lives to care for someone in need by scheduling people to take care of things like meal preparation, house cleaning, drives to doctor’s appointments, and even just visits to chat.

Not everyone is fortunate enough to have these networks in place, though. There are many among us who will be forced to spend their last years cared for by our government in our healthcare facilities. We must ensure there are options in place for them. Men and women who have honoured their country, paid taxes, and contributed to the fabric or our society their entire lives ought to be able to live out their last days and die with the dignity they deserve. This is a human right – and one of the most vital in my opinion. After all, death is the great equalizer. No one escapes.

My parents were unfortunate to die early. But they were very fortunate that, when they were ill, they were cared for by people who treated them with dignity and respect. When they died, they were each surrounded by those same people, who shared in their experience, made sacrifices to care for them, loved them deeply, and would give just about anything to spend this holiday season with them.

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