Poor care caught on tape?

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Anne Dash, with granddaughter Tara Sandor. The family videotaped Anne in her hospital room at Health Sciences Centre. (JOE BRYKSA / WINNIPEG FREE PRESS) Photo Store

Someone once said that when it comes to Canadian hospitals, it's not how much money you have that dictates your level of care, it's how much support you have.

Anyone who has had a loved one in hospital -- particularly, in my experience, a critically ill elderly loved one -- understands that. It helps, of course, if your advocate happens to have a nursing background. And she has a camera to record any lapse in care.

But patient privacy concerns prevent the unauthorized use of cameras in hospitals. Or at least that's what the Winnipeg Regional Health Authority has led us to believe and probably even believed itself. Until, that is, a woman who knows the medical system challenged the WRHA on what is, and what isn't, private in our public care system .

Meet Michelle Dash (RN, BA).

It's been four months since Dash videotaped her 82-year-old mother Anne in obvious medical distress on an acute care ward at Health Sciences Centre. Or at least her mother's distress was obvious to Michelle.

Later, Michelle would describe witnessing her mother's struggle with consciousness, her confusion, restlessness, and the seizures from the day before. Michelle knew why her mother was in distress. She'd had repeated episodes of internal bleeding and accompanying low hemoglobin levels that had already required several blood transfusions. But, according to Michelle, the hospital staff refused to admit her mother was in distress that day, or to draw blood to check her hemoglobin level because it wasn't scheduled until the next day.

So, Michelle decided to document what she believed was inadequate care and she sent her daughter, Tara, home to get their video camera. That might get the nurses' attention, Michelle thought.

And it did.

"They changed their mind after I started filming," Michelle recalled.

Blood work was drawn and -- as Michelle suspected -- her mother required, and was given, an immediate transfusion of two units of packed red blood cells and aggressive fluid resuscitation. But the nursing staff also wanted to do something else.

Seize the video recording.

"I was told to destroy the film by the room nurse under direction of the nursing supervisor on duty due to 'privacy issues,' " Dash said.

Michelle and Tara complied with the demand, even though most of the video was taken with the curtains drawn around her mother's bed. But why, Michelle wondered, did they have to destroy the entire video when it could have been edited, if necessary, to protect other patients' privacy?

Michelle thinks she knows why.

"I believe the HSC, aware I was a nurse, and fearing a potential lawsuit, was acting to protect themselves by asking me to destroy this evidence of inadequate care."

So it was that last May, at the suggestion of University of Manitoba medical ethicist Prof. Arthur Schafer, Michelle decided to challenge the WRHA to provide her with a copy of the policy that prevents one family member from videotaping another family member in hospital. As Michelle wrote in her letter of request to an HSC patient representative:

"I believe, as do others I have consulted with, that I have the right to document my mother's condition if I feel she was receiving inadequate care through videotaping her while in hospital."

At first, Health Sciences Centre responded by assuring her there was a policy. And on June 7, a month after her initial request for proof, officials emailed her a five-page excerpt from the patient care policy and procedural manual titled "consent for image and audio recordings of patients at HSC."

None of it appeared to pertain directly to family videotaping family in a hospital. Then on Tuesday, nearly two months after her initial request, Michelle finally received the answer she had been waiting for from the patient representative.

"She told me they are now saying that I have a right to record my family member as long as 'no other patients' are in the video... . After "much discussion" they are looking at drafting a written policy, as I had requested, to specify this."

Late Friday afternoon, in a statement sent to the Free Press, the WRHA acknowledged "that family members do have the right to take photos and footage of their own family" and that it would be looking into developing policy "that will better help staff and families understand these issues... "

First, of course, the WRHA will have to figure it out themselves.

What it all means is Michelle Dash has just made medical care in Manitoba, if not the whole country, more accountable. And, as it turned out, in the process of advocating for her mother, she was advocating for all of us.

What it also brings to mind, though, is if I were ever gravely ill in hospital, I'd want an advocate such as Michelle Dash at my beside.

With or without a camera.

gordon.sinclair@freepress.mb.ca

Winnipeg Regional Health Authority statement:

"We acknowledge the family's frustration in this matter and want to be clear that family members do have the right to take photos and footage of their own family. We also need to be clear that confidentiality is a fundamental tenet of health-care delivery. Patient privacy is taken seriously in our facilities and our staff work to ensure that no footage is taken of patients without their consent. As part of the consent for image and audio recording policy at HSC it states that: 'Patients, their family and friends, may not record other patients (e.g. roommates), the roommates' family/friends, or staff members without permission.'

"The challenge, of course, within health care is finding the right balance between our confidentiality requirements while providing a family or friend access to loved ones within our increasingly wireless, digital and sharing world. There are concerns for privacy of our patients, visitors, and staff, so the WRHA is looking into developing policy that will better help staff and families understand these issues. For now, if families are wondering what they can or can't photograph or record, we ask that they please keep in mind that consent of patients, family, friends, and staff is important."

Republished from the Winnipeg Free Press print edition July 7, 2012 B1