Embracing Palliative Care: Life Circumstances Transform Caregiver Into a Palliative Care Advocate

Categories: Care, Featured, Opinion, and People & Places.

By Ben Freeland, Communications Advisor, Covenant Health Palliative Institute

Bill Zheng was only 17 years old and in high school when he suddenly found himself in the position of being his mother’s primary caregiver and healthcare advocate. She had been diagnosed with decompensated cirrhosis (severe scarring of the liver) resulting from Hepatitis B. With his father working long hours to support the family, his grandparents unable to speak English and no siblings to lighten the load, it fell to Bill to help his mother ― who suffered from schizophrenia and also spoke limited English ― navigate the health system.

After six months in hospital and no sign of improvement, Bill began investigating alternatives to aggressive treatment. When he heard about palliative care, he sought to learn more, eventually setting up palliative homecare for his mother.

His first meeting with the palliative care physician was a breath of fresh air, he says.

“All of a sudden, the conversation was about quality of life. I knew that what she valued most was being at home and eating the kinds of food she liked, and I was able to advocate for that. I’m happy she got the kind of care I knew she wanted.”

Bill’s mother died in May of 2022, a year and a half following her diagnosis. Bill’s caregiver journey led him into palliative care advocacy. Now 19 and a nursing student at the University of Calgary, he volunteers with the Covenant Health Palliative Institute’s public panel. He contributed his personal story to an online module called Understanding Palliative Care, launched recently on the institute’s Compassionate Alberta website.

“Palliative care is a wraparound service that covers social services together with medical treatment,” he explains. “It really takes into consideration a person’s social situation. I had no idea what to expect, but the first question the palliative physician asked was, ‘What do you want to see at this critical time?’ And from then on, we felt very supported ― on every level.”

Bill asserts that palliative care shouldn’t be viewed as giving up.

“Palliative care is not a death sentence. It’s patient-centered care that really prioritizes their values. It gives you a better chance of living not only better but longer. And the earlier it’s accessed, the better.”

Bill may have been thrust into a role that few teenagers find themselves in, but he didn’t have to walk this road alone.

“I had lots of support,” he says. “There was the hepatologist who introduced me to palliative care. There was the palliative care physician who talked me through the options. The palliative homecare nurse was the most caring person you could hope for. Thanks to her, we were able to do so much at home. I also had a grief counsellor, who helped me deal with the bereavement process.”

He also notes that he received tremendous support from family friends and others in his network.

“Transportation was a challenge, but thankfully I was able to get rides to and from the hospital from family friends. I was also able to crash at a family friend’s house from time to time when I needed an escape from home. Also, all my teachers knew what was going on and were very supportive. I was excused from exams because of my mother’s death.”

This support, plus the knowledge that he had been a strong advocate for his mother, made the grieving process a lot easier than it otherwise would have been, he says.

“Thanks to my grief counsellor, and my own research, I understood anticipatory grief, and by the end, I had pretty much processed everything. The grieving process was made easier by the fact that I had been such a strong advocate ― both for my mother and myself.”

About Understanding Palliative Care

Understanding Palliative Care is a learning module developed by the Palliative Institute to improve public understanding of palliative care. It contains interactive content and incorporates the voices of three people who have personally benefited from palliative care.

Understanding Palliative Care was developed together with palliative care specialists from nursing, medicine and social work, with feedback from the public panel. The module highlights four areas of support ― physical, emotional, social and spiritual ― that palliative care offers as well as the benefits of early palliative care, typically received alongside other treatments. Its messaging is positive and aimed at encouraging people to appreciate the benefits of this often-misunderstood type of care.

To access Understanding Palliative Care, visit CompassionateAlberta.ca.

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