Black Art White Coat26:30Oops, there’s cancer
A month after his wife’s death, Charles Kinch received a letter addressed to him with a reminder from the provincial health authority to schedule a breast cancer screening mammogram.
For Denman Island, BC, man, that was salt in the wound.
« I called them and said, ‘No, she won’t show up because she passed away over a month ago from cancer in the care of BC Cancer,' » he said. declared. White Coat, Black Art host Dr. Brian Goldman.
Leslie Kissel died in December 2020 of advanced uterine cancer at the age of 70. Kinch believes her diagnosis and eventual treatment were mishandled by BC Cancer, the provincial agency that oversees cancer care.
Now he wants an explanation from the province’s Patient Care Quality Office (PCQO) for what went wrong – and changes to a system he says aims to minimize negative outcomes.
« The Office of Patient Care Quality is not about quality, » he said. « He’s interested in protecting the system. Protecting the status quo. And that’s the wrong approach to quality improvement. »
In a statement, British Columbia’s Provincial Health Services Authority, which oversees the PCQO, declined to discuss details related to Kissel’s care, citing confidentiality considerations, and said Kinch may request an « independent review. » by the Patient Care Quality Review Board.
“Having a process by which patients or loved ones can ask questions and share concerns about their health experience is a fundamental part of [a] healthcare system that strives to continually improve and learn,” said Norna Waters, Executive Director of Integrated Risk Management and PCQO Compliance.
Symptoms years before diagnosis
Kinch wrote to the PCQO in early 2021 asking for a review of his wife’s case.
In an email, he said: « A review will not bring her back, but I hope it will initiate changes in the policies, procedures and patient treatment given by some practitioners and the BC Cancer Agency in order to reduce the likelihood that his fate will be known by others. »
Kissel’s experiment began in August 2016, months after he retired from his engineering job due to health issues. She visited a family doctor on Denman Island, complaining of fatigue and various abdominal issues, Kinch said.
Immediately, she was referred to a gynecologist who performed a colposcopy — a examination of the cervix, vagina, and vulva for signs of disease. The results of this test were deemed inconclusive. The family doctor, who was an advocate for Kissel, retired soon after, Kinch said.
Still showing symptoms, Kissel saw a new family doctor and the gynecologist four times throughout 2017, but according to Kinch, no further tests were performed.
After Kissel took the time to travel in 2018, which delayed some appointments, her gynecologist began to seriously consider the possibility of cancer and ordered tests, including a mammogram. After a follow-up appointment with another new family physician, a hysterectomy was performed by Kissel’s gynecologist. It showed endometrial and ovarian cancers that had spread into the muscle of the uterus.
In February 2019, Kissel began a five-week radiotherapy course in Victoria. Throughout this time, Kinch says his wife received little communication from the radiation oncologist, particularly regarding follow-up plans and his prognosis.
« As an engineer, she wanted numbers and specifics. And the doctors she talked to were terribly vague, » Kinch said.
The cancer becomes terminal
In 2020, Kissel was experiencing pain in other parts of her body, including her armpit, and another family doctor — her fifth since 2016 — sounded the alarm. Further tests showed that her cancer had reached stage 4 and had become terminal. She refused to continue radiation therapy or chemotherapy.
Kissel died in a hospice in Comox, British Columbia on December 10, 2020.
« The last few weeks have been as good as she could have expected. She’s had tons of phone calls, great memories. We’ve talked about all kinds of great memories. And she’s given me lots of practical advice on what I should do after he’s gone. » reminds Kinch.
We need someone to listen to us when we give these kinds of comments.– Sue Robins, author and health activist
In a March 2021 response to Kinch’s email, provided to CBC, the PCQO said that due to travel and Kissel’s desire to follow up with her local gynecologist, she had canceled follow-up appointments with a oncologist. He goes on to say that his care followed the recommended surveillance strategy for endometrial cancer.
« Unfortunately, even when recommended surveillance strategies are followed, cancers may go undetected despite these measures, » the response read.
Kinch asked the office to take a second, more detailed look at Kissel’s care. The PCQO has asked senior management at BC Cancer in Victoria to conduct a review with affected healthcare staff.
The bureau sent a more detailed response five months later. Again, he said the care and aftercare Kissel received was appropriate.
Patient feedback is often ignored: activist
According to Dr. Robert Robson, a physician and senior adviser for Healthcare System Safety and Accountability, Inc. in Dundas, Ont., British Columbia has legislation that provides « clearly defined timelines » for reporting complaints.
This process, however, does not necessarily provide an explanation of what happened in a particular circumstance. In fact, section 51 of British Columbia’s Evidence Act prohibits the disclosure of information gathered in the course of an investigation into the quality of hospital care.
This means, says Robson, that opportunities to learn from mistakes during care are limited.
« If there was an investigation, which came to conclusions, and yet we cannot share that with the people directly involved, what is the point of the investigation? » he said.
Organizations and healthcare professionals also fear litigation over adverse events in care, Robson added.
When it comes to getting blame for their health care issues, Vancouver-based health care activist and author Sue Robins says « the cards are against us. »
« We get labeled as difficult and pushed aside because our system is based on efficiency. So it’s about pushing people through the system faster and faster and faster. »
A cancer patient herself, Robins says she felt the feedback she offered — even when it was positive — was ignored. Something as simple as recommending that a hospital change the waiting room TV to a loud news channel was ignored, she said.
Kinch says he wants complaints handled independently of the health care system. Robins agrees.
« There needs to be an independent body that’s set up, that’s neutral, that’s easy to get to, that doesn’t take forever, » she said.
« We need someone to listen to us when we give those kinds of comments. And aside from the media, it’s certainly not a formal process at the hospital. It just doesn’t exist. »
Quality reviews can ‘ensure it doesn’t happen again’
Before Kissel’s death, she and her husband – both longtime engineers – discussed how errors would be investigated on a large project.
Following an airplane incident, for example, recommendations to prevent future errors are made public following an investigation, he said. They asked why a similar approach is not taken in health care.
« We’ve been involved in many projects, many of which haven’t always gone well. There have been quality audits, there have been quality reviews, » he said.
« A quality audit is: finding out what went wrong, calling for action, making recommendations, making sure it doesn’t happen again. »
Ultimately, Kinch says he will continue to investigate, both for his wife and for other patients.
« My motive from the beginning for filing a complaint…has been to seek contact with anyone who can be a catalyst for change to improve the diagnosis and treatment of all future cancer patients, » he said. White Coat, Black Art in an email.