The Value Of End-Of-Life Care

As a news reporter, I specialize in telling other people’s stories as a way of explaining or understanding issues and events that are important to Canadians.

This story is my own family’s story and although it does not qualify as “news”, it is about a painful event we all face.

It is about my father’s death and what that has taught me about end-of-life care.

My father died in a hospice in Renfrew, Ontario. Wrapped around the moments of heartbreak and, frankly, emotional trauma, were family whispers of “what would we do without this place?”

Hospice Renfrew is simply a model of what anyone would want in the worst-case scenario: a beautiful palliative-care facility with exceptional staff that pulses with compassion and respect.

Plan Was To Get Home Care

It was never the plan. When my dad was diagnosed with terminal oesophogeal cancer he bravely ‘put his affairs in order’ and told his loved ones that he wanted to stay at home; with a nurse in the family we thought it was manageable.

His dedicated family doctor made daily visits and Ontario’s Community Care Access Centre arranged for all the supplies my parents needed.

But cancer doesn’t follow anyone’s plans. My father struggled with unspeakable pain as the cancer literally splintered his bones. His caregivers tried every conceivable combination to manage the pain and still follow his wishes to stay lucid. There were so many drugs and so many side effects. He had to be hospitalized several times and he hated that.

Through his doctor he was able to get a much-sought-after space in Hospice Renfew. It was supposed to be a short-term stay to help find the right drug regime, but he never went home. And even though he did not want to die, he knew he was fortunate to be where he was. He had superb 24-hour nursing care that was not in any way intrusive. He had a lovely room with a distinctly non-medical look where family was welcome any time without limits. We even had sleepovers when it was too hard to leave.

Hospices Struggle To Meet Demand

Many people in his situation can’t get into a hospice and have to stay in a hospital. A Canadian senate study in 2000 found that hospices in Canada can only meet about 15 per cent of the demand of our aging population. And government funding has not grown as fast as demand.

As a Canadian living in the U.S. I often quietly give thanks for the Canadian health-care system. A modest-income family, we never once had to worry whether health insurance would cover a necessary drug or another hospital stay the way so many Americans do. But the truth is, there are not enough Hospice Renfrews in Ontario or in Canada.

The ones that do exist do so thanks in large part to the kindness of their community. Hospice Renfrew relies on private donations for 50 per cent of its operating budget. Volunteers play a key role, offering everything from fresh baking to knitted slippers and company for patients and family.

My father didn’t have an easy or gentle death. It is awful to write that and was horrible to watch. But I cannot imagine anyone doing anything more to help him keep his dignity and with as much comfort as possible.

This is a heartfelt thank you to the very special team who took care of my dad, but it is more than that. My dad taught me so much in life, told me always to question and to challenge and to fight for good.

I wish Hospice Renfrew quality care for every Canadian family that needs it. And I urge a national conversation about whether we can afford it and whether we can afford to ignore the need.

By: Susan Bonner, CBC News, Washington Correspondent

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