WHAT HAVE WE LEARNED?

You need a lot of patience. You need to separate grieving from pursuing justice. And you need to not depend on others to take the lead. This is a self help society. It's important to do your homework and learn how to navigate the systems you'll face.

Our journey took three years … and it continues on as we will work to make this Website less now a place of sharing details of our mother's death, and more a place to share resources for others going through similar circumstances. We have come to believe that our mother's case is important, not just because she was a wonderful person (which she was!) but because, in a single case, it seems to summarize so much of what is wrong with the health care system in Canada today.

We found that there are few, if any, 'entry points' for families to get involved, stay involved, and remain informed. The system almost forces one to become punitive when it comes to medical error. Our family tried to do things differently … but it was hard. We started by advocating at the very beginning for an inquiry into our mother's death. Even getting her body into the hands of the Coroner was difficult, as the hospital's pathology department told us, "You won't find anything, you know."

Well, the facts speak for themselves. Broken ribs, concussion, malnutrition, dehydration, improper documentation, blocked bowels (no one noticed she hadn't had a bowel movement in 15 days!) … and the list goes on. The Coroner's own findings show how systemic the problem was … and yet everywhere we turned we seemed to face a wall of silence. At the beginning.

We wrote everyone. Former Chair of the Board of the Region and former Board members. The surgeons and their bosses at the hospital and heads of their professional groups. Our mother's referring doctors. EVERYONE. And not even one reply or even an acknowledgment in the early days. We began to think that the legal, adversarial, route was the only way to go, despite being told that we could look forward to years in court with a final settlement in the neighbourhood of $5000 (the going Canadian worth of a 77 year old senior, or so we were told!) And that's IF we could win against the named doctors and the hospital who would be backed by the mighty Canadian Medical Protective Association, with its billion plus dollars of doctors' funds and daunting record of success against families with cases such as ours.

THE TURN AROUND

Just as we were rethinking the wisdom of trying to work with, instead of against, this closed door system, three amazing things happened.

First, a man wrote us and told us that because of www.esthersvoice.com, he had insisted that a doctor attend to his mother in the hospital when they were trying to tell him she was just senile. She is alive today, he says, because he'd read our Website and our mother's story. His mother turned out to have had 70% blockage of an important artery and would have been dead in weeks, if not sooner, had he not pressed for further investigation, so convinced was he that her 'sudden onset' senility could not be attributable to anything but a medical condition.

The second thing was that after two years of runaround at the Coroner's office (with outside consultants that never got around to finishing reviews of the case and a Medical Examiner who called us 'abusive' because we were getting anxious over months and months of no word) we found an advocate in Coroner Margaret Turner who had been assigned to the case mid-way. She proceeded to dedicate herself to doing a good, maybe even a great job, making the case for systemic problems in both Chilliwack Hospital and the Region that required serious attention to ensure future patient safety beyond our Mother's case.

Finally, our story and Website was brought to the attention of a reporter at the Vancouver Sun newspaper. Glenn Bohn and his editor believed that this was a cautionary tale that definitely needed telling, and we were astonished when our 'little story' made it to the front page and two full inside pages of the May 22nd, 2002 edition of the newspaper.

So, that's how we got back on track without going the legal route. Over 6,000 visitors to the Website mostly told us we were on the right track. Amazing people at the RNABC, leaders in geriatrics, a newly appointed and much more responsive Fraser Health Authority, and even a personal letter from Roy Romanow prior to his final Commission Report, told us we were on the right track. Dozens and dozens of emails from families like ours, and health care professionals who want to make a difference (but feel tired and discouraged) told us we were on the right track.

And so we chose to work with the health care system, and not against it, and share our story.

THE OUTCOME

The outcome has been interesting. The Medical Response section of the site will outline specific changes that have occurred following the Coroner's investigation. We rely on others - the doctors, nurses, and patients now in the system - to act as watchdogs and tell us if these 'promises' are indeed being kept. Is there improved documentation, better tracking of patients, new protocols, multi-disciplinary committees, better family consultation, and even errors reporting at Chilliwack Hospital and beyond? We can only trust that the health care professionals who appeared to take us so seriously, have also pledged to implement their own recommended changes.

We do know that the Fraser Health Authority presented our mother's case at a conference back East on quality improvement and risk management in a presentation called 'Esther's Voice: A Story of a Health System Failure and Hope for the Future'.

The presenter, Cathy Weir, President of the Western Healthcare Improvement Network, wrote us that "Esther's story has truly been a catalyst for change at Chilliwack Hospital, and within the leadership of Fraser Health there is a strong commitment to improve the system so that we can fulfill our promise of quality to those we care for; your Mum's story is a central feature of this."

Lucie Tremblay, Director of Nursing and Clinical Services of a long-term care institution in Montreal wrote to tell us that our mother's story will be discussed at the Council of Nurses as a learning experience for the nurses working in the facility.

Many health professionals emailed us and said they would remember the case and use it to guide them in their own careers and relationships with patients.

Empty words? We hope not. We've already seen a difference. Our father went into Chilliwack General on April 18, 2003. He was only in for eight hours, and he died that night. The difference between our two experiences at the hospital were like night and day. Certainly circumstances were very different, but the attitude to both patient and family was a complete 100% turnaround. It was Good Friday of a holiday weekend, and yet this time there was a doctor available to talk to. Our father was treated professionally and with great kindness. We were given options. And we were encouraged to stay in the room and say our goodbyes (unlike with our mother when we were told visiting hours were over and she died that night alone.) We wish this could be the experience of all families at Chilliwack Hospital. And yet we know it isn't because we continue to receive emails and phone calls. But we do know it's better … and that's a huge start.

WHAT CAN YOU DO?

For those going through these same issues right now, there are two extremely helpful books. The first, "After Any Diagnosis: How to Take Action Against Your Illness Using the Best and Most Current Medical Information Available" by Carol Svec is an excellent guide to adopting an information-gathering strategy to improve your odds of navigating the health care system. We wish we had known of it before our mother died.

The second book, "Medical Nightmares: The Human Face of Errors" by British Columbia Coroner Susan B. McIver compiles stories of families like ours across Canada who share how medical errors impacted their lives. It offers recommendations on what families can do if they suspect medical error … and best of all, makes recommendations on how we can open the system so that we learn from these errors instead of trying so hard to cover them up.

WHAT WE'D LIKE TO SEE

In terms of what we'd love to see for the future - overwhelmingly we (and many others) would like to see an overhaul of the College of Physicians & Surgeons. Patients should have the right to view doctors' records - not just the results that come from published disciplinary hearings, but the very fact of formal complaints as well. (After all, our mother's case never made it to the Disciplinary Committee of the College and yet we know others would benefit by knowing more about the anesthetist and surgeons who were responsible for our mother's 'care.') Massachusetts has a Physician Profiles Program that gives consumers the addresses and specialties of physicians, in addition to information about outstanding complaints or malpractice lawsuits. The profiles are available over the Internet. Why can we not have similar access to information?

In our mother’s case, we never got a chance to tell our side of the story to the College as meetings were ‘closed door’ to the family. And yet, final testimony from the doctors is in direct conflict with what we know to be true. Family, friends, pre-op anesthetist, and Esther’s own GP and hip surgeon knew she did not want general anesthetic the day of surgery given past surgical experience. Yet on the Sunday night before surgery, an anesthetist new to her case, someone unfamiliar with her rather long and complicated history, chose to change the agreed upon procedure the next day and administer a general. Worse, he testified that she wanted this change and agreed to it (although he has no supporting documentation). This DESPITE a recorded message following his visit from our mother to the family, full of anxiety that the “gameplan seems to have been changed and I don’t understand why and there’s not one of my doctors to talk to Sunday night.” (her words). Yet the College accepted Dr. Suleman’s recollection of the event and we had no imput.

Their conclusion to this case? As a family, we feel it was very insulting given the evidence that shows that this was a woman whose autopsy showed fractured ribs, subdural hematoma, and blackened bowels and evidence that showed little if any documentation, questionable continuity of medical care, and almost certainly some questions as to medical procedures and practice. What did they say? “It is recognized by the committee that the degree of supervision provided in the hospital was probably less than Mrs. Winckler required.” Probably??? No wonder that not one recommendation was made by the Peer Review Committee and the only follow-up was the promise that the doctors named in our complaint would receive a copy of the final report! In our family’s opinion this was not enough. The College had a rare opportunity to step up to the plate in a case that had no legal ramifications to them – and they chose to sidestep all accountability. Little wonder that our most fervent hope from this case is that the College is subjected to a complete procedural review and that new ways are found to incorporate patient and family interests.

We would also like to see formalized errors reporting. 5,000- 10,000 Canadians are estimated to die annually from medical error. Health Canada must establish an arms-length institute to help health care workers find mistakes, investigate and prevent them. There have been plans to create a Canadian Patient Safety Institute to improve Patient Safety. But be sure that on the letterhead, there are lay people as well as health care professionals. Why not include patients and their families who have a lot to say and contribute to health care improvement in this country?

Abraham Verghese, M.C., Director of the Center for Medical Humanities and Ethics at the University of Texas Health Science Center in San Antonia wrote something quite radical in the March 16, 2003 New York Times: "Solutions are desperately needed. I think we could start by sending all malpractice suits to regional panels of judges, physicians and consumer advocates to screen and eliminate those with no merit … and when we are patients, we could insist on being equal partners in our care. We might bring along family and friends when we interact with doctors and see that all our questions are answered and our expectations realistic. Medicine is fantastic in what it can accomplish, but there are real and clear risks." He goes on to say, "Our efforts in medical schools to turn out skilled yet empathetic physicians who communicate clearly and who can put themselves in their patients' shoes is critical to stemming the malpractice crisis. Patients sue when their feelings are ignored or when they are angered by lack of genuine concern for their welfare…"

Food for thought. Ultimately it points out the most important thing we've learned: Share information in your community and beyond. Learn how to advocate for your cause … and the greater cause. Understand when and how to get the media involved. And when to move beyond making your efforts about 'retribution' for the wrongful death of a loved one and more about making their life meaningful through advocating change.