Our larger-than-life, lion-hearted brother-in-law, Gabriel Romano, died this month. His daughter (Talia’s first cousin who is herself a new doctor) and Jeff were by his side as Gabe took his last breath. He fought hard to overcome the particularly aggressive cancer he developed over two years ago. In that time, he experienced (and we witnessed anew) the best and worst of medical care: The specialist who—in spite of his expertise—absurdly trivialized Gabe’s symptoms and abnormal test results and sent him on his way rather than making sure it wasn’t cancer (which it was); and eventually, when treatments failed, doctors who shied away from delivering realistic assessments that would have helped the patient and family prepare for the inevitable. But there were also dedicated, empathic, and helpful palliative care nurses and home care workers who provided wonderful care for Gabe and support for the family.
We were once again witness to medical care that could have been—should have been— stellar but was not, instead leading to a delayed diagnosis and later confusion for the patient and his family that made medical decision-making necessarily more complicated and more fraught.
Our daughter Talia’s misguided medical care was not a “one off,” and the recent loss of a beloved family member drove this home for us again. We know that communication errors account for an estimated 70% of medical errors. Each time we speak publicly, we are approached afterwards by people (who mostly work in medicine) who share yet more examples of communication failures, errors, and near-misses that bring either harm (including death) or more mistrust in the system. We know how essential the work we do is; making patients safer and helping medical professionals deliver better care are at the core of our efforts.
It’s been a busy year of working to bring about the change we all would like to see. We are proud of our efforts through Talia’s Voice (even while aware of how much more there is to be done, how slowly the wheels of change turn). From February 2022 through November 2022 we were engaged in one to two presentations a month; be it as keynotes or leading trainings, participating in workshops, speaking at conferences, going “inside” hospitals (virtually), addressing doctors, nurses, hospital administrators, patient safety directors, risk managers, bioethicists, medical attorneys, pre-med and undergraduate students. The work is emotionally draining, since we take a deep dive into what happened Talia every single time we speak. Yet we continue to do it on behalf of every patient everywhere, and every future patient, too—because it matters.
We’ve also begun actively fundraising for the longitudinal research study we’re sponsoring in Talia’s name. It’s an extraordinary opportunity—research that is not only groundbreaking but has the potential to change the ways hospitals communicate with you and me, on the quality of the care you and I receive. The study will be conducted out of the University of Washington and Stanford Schools of Medicine, with principles Thomas Gallagher, MD and Michelle Mello, JD, PHD—both national leaders in patient safety—at the helm. At our first fundraising event, held here in September in Eugene, Oregon, we set a goal of $25,000, but made it to $40,000! The beauty of that is that it sent us over the $100,000 threshold which will allow the study to commence in the new year.
The research will focus on patients from marginalized and vulnerable populations—part of our continuing commitment to diversity, equity, and inclusion—and will require a total of $450,000 over the next five years. To have reached 100k is a remarkable feat for us, since fundraising has never been in our skillset before. We are almost a quarter of the way there! We are excited to turn next to Seattle, then to Vancouver, B.C. in the spring.
Of course, each of you is welcome to donate to this research as well. If you are so moved, please do! You can learn more about the study here at Talia’s Voice, and you can donate from there or by clicking here (and choosing the research fund at check-out). If you are from Canada, or if you just prefer, you can donate directly to the University of Washington’s Talia Goldenberg Fund for Patient Safety Research by clicking here. (UW is able to issue a tax receipt for Canadians. Talia’s Voice is allowed to issue tax receipts to Americans but not Canadians.) Every donation, big or small, will make a difference. We get teary thinking how touched Talia would be by all of this, by each dollar we raise to stop senseless deaths like hers from happening, and to offer better treatment, ethical treatment, to those who experience medical harm. She’d throw her arms around you in delight—blue eyes lit up—if she could; that was always her way. This year she would welcome all donations on behalf of her beloved Uncle Gabe, too.
May you each find moments of joy and light in this season of wintery darkness.
Naomi and Jeff