Many people – family, friends, strangers – have asked us why we’ve pursed answers to our mother’s death so vigorously. Why not just let it go, let time heal? Well, to answer this, you had to know our mother. She was a strongly principled individual who believed that if there was a wrong, it needed righting, and that we should never leave it to someone else to promote change if it was within our own power to do so.

So, what have we learned on this journey? Above all, 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 along the way.

Our journey to get any answers at all to our questions took three long years … and the journey continues on as we learn more and work to keep this site as a teaching case study and even as a resource for others going through their own unique but potentially 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 seems to have 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 by a leading Vancouver litigator!) 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 turnaround

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 our website, 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. Ironically, her name was Esther he told us.

The second thing was that after two years of run-around 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 Esther’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. Tens of thousands of visitors to the website, and many who shared that 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.

Outcomes

The results have been widespread and sometimes deep within the system. The Medical Responses section of this site outlines specific changes that have occurred following the Coroner’s investigation. Fraser Health Authority followed up at our request over 10 years later, with a Summary Report that showed how seriously they had taken the issues raised in the JOI.

Fraser Health Authority had earlier presented our mother’s case at a conference in the 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‘.

Catherine Winckler was asked to present to the 17th National Conference on Gerontological Nursing on June 2nd, 2013. Her speech is provided here.

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 is discussed at the Council of Nurses as a learning experience for the nurses working in the facility.

Many health professionals have emailed us saying 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.

Ultimately, 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 have been so responsive to us over the years keep their pledge to make Esther’s voice heard. We believe they do.

Conclusions

People have asked us if we regret our decision to question events fully, to cooperate with health professionals, and to not go the route of litigation. We know it is the right choice for our family. It may not be for others, but it has brought some sense to the seemingly senseless for us. We continue to believe it should not be an issue of ‘sides’ in health care, but of everyone – government, health care professionals, patients, and families – being responsible and accountable. We hope that Esther’s Voice continues to be heard wherever the issues of quality and continuity of health care are being raised.