February is always grueling for us—a long slog through all the moments, dates, and events that took Talia from us forever. To honor and remember Talia on this eighth anniversary, we are proud to announce that Talia’s Voice is sponsoring a significant research study to be conducted by the University of Washington and Stanford Schools of Medicine. We recently signed a Gift Agreement with UW and the piece below is the Addendum to the agreement that explains how and why this research is so important. We will be contacting you soon with further details as we embark on our fundraising campaign.
The Talia Goldenberg Fund for Patient Safety Research
Over 250,000 patients die every year due to medical error, and our daughter, Talia Goldenberg, was one of them.
Trying to squeeze all of who Talia was into a paragraph is like putting salt water in a jar and calling it the ocean. It’s an outrage even to be asked to try—that’s what medical error does: it steals our loved ones so they can’t speak for themselves and meanwhile leaves us bereft and bitter. Yet Talia was anything but, and to honor her and continue acting on the love we feel for her, we keep clawing our way back from the depths and strive, in her name, to work from our best selves.
Artist, athlete, and silly goofball, Talia was open, warm, available, and unflinching in facing the truth—hers, others’, and the hard realities each often faced. Driven and determined in the classroom and on a soccer pitch, friends knew they could find Talia in the art studio at college day or night because she had a crazy stay-up-all-night-to-get-it-done work ethic. Talia was a leader but did it quietly, not for power but to help others find their best selves. She was gentle with people but also with animals, whom she loved dearly, including her oodles of “stuffies” (stuffed animals) which were always real to her. Easy with herself and confident, she was creative and playful. But above all, Talia was the consummate listener, a person who made friends with and showed up for people whether they were 4 or 64. How terribly ironic, then, that Talia died because her own medical providers refused to listen—to her or to us—and failed to give her the care she needed and pleaded for.
What happens to patients and families like ours who are harmed by the medical system? What would help them heal after such incidents occur? Is it possible that being open and honest with patients and families, learning from them, might also simultaneously improve care in the medical institution where the harm occurred? Can a hospital that embraces transparency, accountability, and compassion shift the culture such that the number of harm incidents in that institution decline?
We hope, ultimately, that answering these questions will help us improve, expand, and better develop Communication and Resolution Programs (CRPs), principled, reliable, just responses by institution after they commit harm. CRPs are near and dear to our hearts because they insist organizations respond ethically when things go wrong; they insist institutions hold themselves accountable, act with integrity, and treat patients and families with the compassion and dignity they deserve; insist they learn from these events and their errors to prevent harm from occurring again. But to do so, there must be evidence-based information about how harm affects people—including marginalized and vulnerable populations.
Any system which tends to the patient and family after harm must understand what harm “looks like” in the aftermath; yet there is a dearth of information on the subject. And it matters because over 250,000 patients die every year from medical error, with hundreds of thousands of others injured. Any entity trying to respond to harm must understand first what happens to the lives of people hurt by the system.
It’s too late for our daughter, Talia, who died due to medical error in 2014 when she was only 23. Talia walked into the hospital for a surgery on a Monday morning, and by Tuesday afternoon she was comatose and brain dead. She experienced over 24 hours of mismanaged care—of which she was fully aware—before her airway closed and she suffocated, knowing the whole time that her medical care providers had abandoned her and that she was going to die. The fear she experienced is beyond comprehensible, though we saw the terror in her eyes and the urgency with which she pleaded for help—a scene we play over and over again like a nightmare on repeat, only it was real. At least 11 discrete opportunities came and went, where if the provider caring for Talia had listened, believed, and acted, then Talia would be alive today.
After it happened, the hospital never contacted us, never held themselves accountable or took responsibility, never apologized, never reviewed the events leading up to and including their failure to respond appropriately to the life-threatening emergency of their own making that left Talia brain dead— never never never. Patients’ and families’ suffering is often compounded by the traditional response of clinicians and healthcare organizations when patients have been harmed: sharing only limited information, not accepting responsibility, and failing to ensure fixes are in place to prevent recurrences. The hospital left us to pick up the pieces of our lives without ever acknowledging the mess they created for us—and for their own providers, too. Their silence was the loudest statement made. To this day, they have not demonstrated any interest in what our lives look like now, nor how this has affected us and our family.
Communication and Resolution Programs have the potential to change all that. CRPs are comprehensive, principled, and systematic programs that seek to ensure every patient who is harmed by healthcare receives a response that is transparent, compassionate, meets their needs, and that drives learning and improvement. In the ensuing atmosphere of transparency and accountability, staff are not afraid to report potential problems or to speak up when they see something of concern. Additionally, providers learn how to respond to patients and families after a breakdown in care occurs, and their communication skills improve. Since it is estimated that 70% of medical errors are due to communication breakdowns, this improved communication, combined with the change in culture, can reduce harm and improve the safety of all patients.
Because we are human, organizations that offer medical care will never be free of harm events, but they can only respond appropriately to a harmed patient and family if they understand what that experience entails for patients and families.
While it is encouraging that we see many more organizations adopting the CRP approach after harm, there is very little evidence-based information about how CRPs can best support the ongoing needs of patients and families and virtually none that looks at vulnerable and marginalized patient populations.
That’s why we are establishing the Talia Goldenberg Fund for Patient Safety Research so that we can begin to fill this information gap. The University of Washington School of Medicine through its Collaborative for Accountability and Improvement and the Stanford School of Medicine have proposed a groundbreaking study that will answer 3 fundamental questions:
1) How do the experiences, needs, and expectations of patients and their families who have been harmed by healthcare evolve over time?
2) How do these experiences, needs, and expectations vary among patients and families with different degrees of vulnerability due to race/ethnicity or economic disadvantage?
3) How can CRP processes be strengthened to more equitably and effectively address patients’ and families’ needs and concerns at the optimal points in their recovery from an adverse event?
Medical institutions have a moral obligation to do better for all patients and families who are harmed while under their care. Our hope is that providing evidence-based information about the short- and long-term impact of patient harm will encourage these institutions to fulfill their obligations to patients and families. But research is expensive, and we can’t make this happen by ourselves. We urge you to join us, in Talia’s memory, in honor of a loved one you know who was harmed in the system, or as an investment in your own healthcare knowing that we will all be patients one day. We are proud to be investing in this research both personally and through our non-profit, Talia’s Voice: Projects for Patient Safety. Please join us in changing the culture in medicine. Let’s take a leap towards transparency, accountability, and compassion.
Wishing you the best,
Jeff and Naomi