This B.C. man says his late wife's cancer care was inadequate. He wants changes to how complaints are handled

White Coat Black Art26:30Whoops, there is cancer

A month after his wife's death, Charles Kinch received a letter addressed to her with a reminder from the provincial health authority to schedule a breast cancer screening mammogram.

For the Denman Island, B.C., man, it was salt in the wound.

"I called them up and said, 'No, she's not going to show up because she died more than a month ago of cancer under the care of B.C. Cancer," he told White Coat, Black Art host Dr. Brian Goldman.

Leslie Kissel died in December 2020 of advanced uterine cancer at age 70. Kinch believes her diagnosis and eventual treatment were mishandled by B.C. 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 that, he says, aims to downplay negative outcomes.

"The Patient Care Quality Office is not interested in quality," he said. "It is interested in protecting the system. Protecting the status quo. And that's the wrong approach to quality improvement."

In a statement, B.C.'s Provincial Health Services Authority, which oversees the PCQO, declined to discuss specifics related to Kissel's care citing privacy considerations, and said that Kinch could request an "independent review" by the Patient Care Quality Review Board.

"Having a process by which patients or their loved ones are able to ask questions and share concerns about their health experience is a fundamental part of [a] health system that strives to continually improve and learn," said Norna Waters, executive director of integrated risk management compliance and the PCQO.

Symptoms years before diagnosis

Kinch wrote to the PCQO in early 2021 requesting a review of his wife's case. 

In an email, he stated: "A review will not bring her back, but I hope it will initiate changes in the policies, procedures and treatment of patients given by some practitioners and the B.C. Cancer Agency to reduce the probability of her fate being experienced by others."

Kissel's experience began in August 2016, months after she retired from her job as an engineer due to ill health. 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 — an examination of the cervix, vagina and vulva for signs of disease. The results of that test were deemed inconclusive. The family doctor, who was an advocate for Kissel, retired shortly after, Kinch said.

Still experiencing symptoms, Kissel saw a new family doctor and the gynecologist on four occasions throughout 2017, but according to Kinch, no additional tests were performed.

After Kissel took 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 doctor, 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 course of radiation in Victoria. Throughout this time, Kinch says his wife received little communication from the radiation oncologist, particularly regarding follow-up plans and her prognosis.

"Being an engineer, she wanted numbers and specificity. And the doctors she talked to just were awfully vague," Kinch said. 

Cancer becomes terminal

By 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 testing showed her cancer advanced to Stage 4 and became terminal. She declined further radiation or chemotherapy.

Kissel died in a Comox, B.C., hospice on Dec. 10, 2020.

"Those last weeks were as good as she could have expected. She had tons of phone calls, good reminiscences. We talked about all sorts of good memories. And she gave me lots of practical advice on what I should do after she's gone," Kinch recalled.

We need someone to listen to us when we give this kind of feedback.- Sue Robins, author and health-care activist

In a March 2021 response to Kinch's email, provided to CBC, the PCQO stated that due to travel and Kissel's wish to follow up with her local gynecologist, she had cancelled follow-up appointments with an oncologist. It continues, saying that her care followed the recommended surveillance strategy for endometrial cancer.

"Unfortunately, even when the recommended surveillance strategies are followed, cancers can go undetected despite these measures," the response reads. 

Kinch asked the office to take a second and more detailed look at Kissel's care. The PCQO asked senior executives of B.C. Cancer in Victoria to conduct a review with the health-care staff involved.

The office sent a more detailed reply five months later. Again, it said the care and follow up that Kissel received was appropriate.

Patient feedback often ignored: activist

B.C. does have legislation that provides "clearly defined timelines" when it comes to reporting complaints, according to Dr. Robert Robson, a physician and principal advisor for Healthcare System Safety and Accountability, Inc. in Dundas, Ont.

That process, however, doesn't necessarily provide an explanation of what happened in a particular circumstance. In fact, section 51 of B.C.'s Evidence Act prohibits the disclosure of information collected as part of a hospital quality care investigation. 

That means, Robson says, the opportunities to learn from mistakes during care are limited.

"If there was an investigation, which reached some conclusions, and yet we can't share that with the people who are directly involved, what is the point of the investigation?" he said. 

Health-care organizations and professionals also fear litigation over adverse events in care, Robson added.

When it comes to getting accountability for problems with their health care, Sue Robins, an author and health-care activist based in Vancouver, says "the cards are stacked against us."

"We get labelled as difficult and pushed to the side because our system is based on efficiency. So it's about shoving people through the system faster and faster and faster and faster."

A cancer patient herself, Robins says she felt the feedback she offered — even when positive — was ignored. Something as simple as recommending a hospital change the waiting-room TV from a loud news channel was brushed off, she said.

Kinch says he wants complaints to be handled independently from the health-care system. Robins agrees.

"There needs to be an independent body that is set up, that is neutral, that is easy to access, that doesn't take forever," she said.

"We need someone to listen to us when we give this kind of feedback. And short of the media, it certainly isn't any formal process in the hospital. It just doesn't exist."

Quality reviews can 'make sure it doesn't happen again'

Before Kissel's death, she and her husband — both life-long engineers — discussed how errors would be investigated on a big project. 

In the aftermath of an airplane incident, for example, recommendations to prevent future errors are made public following an investigation, he said. They questioned why a similar approach isn't taken in health care.

"We've been involved in many projects, many of which haven't always gone right. There's been quality audits, there's been quality reviews," he said.

"A quality audit is: find out what went wrong, call to action, make recommendations, make sure it doesn't happen again."

Ultimately, Kinch says he'll continue to pursue further investigation — both for his wife and other patients.

"My motive from the beginning of raising a complaint … has been to seek contact with anyone who can be a catalyst for change to improve the diagnostics and treatment of all future cancer patients," he told White Coat, Black Art in an email.