Why this health insider is fighting the system

TheStar.com – moneyville.ca/article
Sun Feb 13 2011.   By Ellen Roseman

Sholom Glouberman had laparoscopic surgery to remove part of his large intestine after a polyp was found.

His father had died young of colon cancer, a disease that runs in families and is preventable if caught early.

Luckily, his polyp was not cancerous. But he got an infection (septicemia) after surgery and could have died if his wife hadn’t rushed him back to the emergency department.

He describes his experience in a new book, My Operation: A Health Insider Becomes a Patient, which names the doctors and nurses who treated him at the Toronto General Hospital and reprints his medical records.

Glouberman, 70, is the philosopher in residence at the Baycrest Centre for Geriatric Care in Toronto. (I met him when he was my teaching assistant at McGill University’s philosophy department.)

A published expert who knows health care, he has great connections and thought he could stand up for his rights. He was wrong.

“I had lost my stuffing and could not properly say what was on my mind,” he writes about his passivity in the hospital.

“I guess that this whole long story about my operation has been my attempt to say it all.”

Once he was feeling better, Glouberman decided to do something to strengthen the patient’s voice in the health care system.

He retrieved his medical records, with the help of the patient representative at the hospital, and started assembling his memoir.

He discovered that his appendix had been removed at the same time, a fact never mentioned to him.

Nor was he told about a heart valve problem (shown on a cardiogram), which meant he’d have to take antibiotics before each visit to the dentist to avoid a possible infection reaching his heart.

The hospital representative was unsympathetic to his complaints about lack of communication.

“She told me that the hospital already had procedures in place to do what I suggested. Despite the fact that these procedures were not applied, she was not prepared to think about them or about other ways to improve the patient experience.

“In the end, it became painfully clear that, fundamentally, her job was to protect the hospital.”

Eventually, the hospital’s chief executive invited him to join a committee looking at patient-centred care.

He rounded up other people who’d had difficult encounters with the system and called it The Group for Realistically Improving Patient Experience (GRIPE).

His work on the committee came to an end after just a year. Then, he started another group, the Patients’ Association of Canada, to be an organized voice for the users of the health care system.

On Feb. 15, the group will have its official launch with a conference on improving the patient experience, held at the Toronto Reference Library.

There’s no charge for the conference or membership. Strength in numbers will assure funding opportunities, its president says.

The group already has funding from the Ontario Medical Association to sponsor awards for doctors who are caring, attentive and willing to listen. Patients nominate the candidates and other patients act as judges.

The first Patient’s Choice Awards went to Dr. Carolyn Brown and Dr. David Newport, members of the Primary Health Services of Peterborough.

“We’re not a complaints organization,” Glouberman emphasizes. “We deal with the policies that lie behind individual complaints.”

Fighting the system leads to resistance, as he knows. He hopes the group will be a participant in the system – and its opinion will be sought when tough decisions have to be made.

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