October 29, 2012
The quintessential nurse stood by her dying father’s bedside and uttered a bitter pledge to her family. “I will never enter a hospital again,” said Judy Boychuk Duchscher, who had seen her father suffer countless and needless indignities in previous days.
Judy never kept her pledge. She did not give up on nursing. In fact, she threw herself into a PhD and into the causes of patient safety and patient-centred care, vowing to find a way to honour her father and others like him.
To do so, she spent several years reflecting on the underlining issues that had permitted the grievous errors, flights of ego and apathetic care her father endured. During that time, she also gradually let go of the guilt she felt, that she had somehow failed her father.
Victor Boychuk, Judy’s dad, was a career educator. He taught high school chemistry and physics for years and served as a principal before retirement. Victor was ever-engaging with an endearing wit and a demonstrative sense of humour.
Victor and his wife wintered in Arizona and during one of Judy’s annual visits, in the winter of 1997, something happened that changed all of their lives. This trip marked Judy’s first encounter with a true sense of vulnerability at the hands of the healthcare system, a feeling that would become all too familiar.
Victor had a persistent cough that he dismissed as a common cold, for which his family physician had given him preventive antibiotics. But Judy’s keen clinical eye told her that this was not a simple cold, but the ominous sign of heart failure. She took his pulse and noted an irregular heart rhythm. She then took him to a cardiologist in Phoenix who prescribed Digoxin to regulate his heartbeat. But Judy was surprised that her dad wasn’t also given an anti-coagulant to prevent clots from forming in his heart.
After leaving the cardiologist, Judy had increasing concern that her father was not given an anti-coagulant. Judy decide to phone the cardiologist, who was unconcerned because the Boychuks were returning in a few days to Canada where Victor’s family physician could follow up on the situation.
“A week after my father returned home he had a massive stroke,” says Judy. “Over time he became a shell of the man he was.” Judy felt guilty for years, feeling that if she had pushed the cardiologist harder for the proper medication, Victor’s stroke could have been prevented. The family rallied around Victor, and Judy says there were many moments of love, laughter and intimacy in the family.
But about eight years after the stroke, Victor began to experience bleeding. He went to the hospital and a colonoscopy was done, which revealed some suspicious nodules, which turned out to be cancerous. Victor and his family were left with a decision. He’d lost considerable weight after the stroke and he wasn’t much more than 100 pounds. “Honestly, I think he lived on Werther’s caramel candies and cigarettes,” says Judy, chuckling at the memory. “He wasn’t the kind of person you’d want to take for major surgery.”
But given the options, her dad decided to undergo major surgery to remove the section of bowel that contained the tumour. Judy worked with the hospital’s nutrition team to get him ready. The surgery was performed and, as Judy feared, her dad struggled to recover from this major event. Soon after the surgery, Victor’s health began to fade.
“The challenge for him was that he was so nutritionally depleted.”
As she explains, the worry in cases like her dad’s is that healing requires proper nutrition. Without it, infection sets in and the infection burns up the body’s scarce resources.
Judy met numerous times with the hospital dietician and the two talked about Victor being fed intravenously. Judy knew that the I.V. supplement carried its own risks, but Victor’s post-surgical body was in dire need of fuel.
After several unsuccessful attempts by the dietician to collaborate with the surgeon, Judy requested a face-to-face meeting to discuss her father’s deteriorating condition. “I think that was the nail in the coffin, quite honestly,” says Judy, who described the doctor as insulted by her input. “He got angry that we were suggesting care that he was clearly capable of deciding by himself.”
In the days following, Victor’s condition continued to deteriorate. He developed a fever and was projectile vomiting. Things went from bad to worse. Victor was supposed to get up and walk for therapy each day. His hesitancy to “get up and move” was interpreted by his caregivers as his being uncooperative. But Judy says he was just simply exhausted. Judy arrived one day to find Victor being walked, though he was clearly out of breath and terribly pale. Victor was being encouraged to push himself a little more, while he gasped for breath.
Judy assessed him and sure enough, his heartbeat was irregular and his oxygen level was dangerously low. His heart had suffered a critical blow during this activity, and shortly after Victor was placed in coronary care. Judy went into the critical care unit to find her dad in distress and because of her nursing experience she noted clear signs of heart injury. Judy drew the staff’s attention to these signs and with her encouragement, steps were taken to diagnose that Victor was, in fact, having a heart attack.
Victor’s malnourished body continued to battle infection with the help of antibiotics, but his kidneys were failing. Judy’s watchful eye and insistent voice brought attention to Victor’s changing status, but for Judy it all seemed too little too late. With the assistance of a caring physician who was on-call, they discussed the reality of the situation.
Things were not changing; the treatment the physicians had prescribed was not working. Victor slipped into a coma and the next 48 hours were like a slow countdown to the inevitable. One moment gave Judy a reprieve. She was sitting with her mom holding vigil over Victor’s bedside when he suddenly laughed out loud. His face lit up with joy. He was animated and clearly talking to people that neither Judy nor her mother could see.
Judy and her mother were mesmerized by what they were witnessing. It seemed that Victor was telling them he was ready to move on and that helped them decide that it was time to discontinue support. Judy called the physician to tell him of their decision.
“Well, I’m not going to do that,” said the doctor. “We haven’t given it enough time.” Judy was devastated. This decision, by Judy and her mother, was excruciating to make, but loving and respectful of Victor’s dignity. To them it was about the quality of his life and the integrity of his death. Judy called in the hospital administrator. The order was signed and Victor died in the hospital’s palliative care unit two days later.
Judy returned to Edmonton to complete her school term. Her days spent working and studying, her evenings spent in grief. Judy not only grieved the loss of her father, but the loss of respect and belief in the healthcare system that she had devoted her life to. Growing bitterness motivated her to pledge to never enter a hospital again.
“I just didn’t think I could face the institution that had so disappointed my father and me. But it wasn’t long before I realized that would be a travesty,” Judy adds with a smile. “I realized that would not honour my father. I needed to tell his story and I needed to be able to change something about the system so this didn’t happen to somebody else.” Judy threw herself into teaching student nurses. She launched an organization called Nursing the Future, where new nurses can come for support and guidance on how to become the type of nurse they want to be.
She also speaks on patient safety and offers her 33 years of nursing experience in helping the Canadian Patient Safety Institute (now Healthcare Excellence Canada). “This idea of patient-centred care can’t just be a phrase,” says Judy. “It can’t be a marketing idea. It has to be real. The patient and their family need to be the centre of whatever we’re doing. They have to be involved.”
If she has another message, it’s that healthcare, at its foundation, is not about technology and science. “We need to practice compassionately,” she says.
The story of how Judy continued to advocate for her father’s care shows the importance of family involvement in healthcare.