Last month, BMJ Quality & Safety, an international peer review publication focusing on healthcare improvement, released a unique study conducted between January 2010 and November 2013 on adverse events – unique because the study was the first of its kind to use patient-reported data. It collected 450 narratives from nearly 700 patients and families –  from all across the country (in fact, every state was represented except North Dakota), stories that captured patient experiences from age 2 to 90. A significant finding from this study was that the quantitative data correlated with other provider-driven patient safety surveys intended to capture adverse event data. The most common errors were missed or delayed diagnoses; surgical complications were the next largest category – with wrong site surgery and foreign objects left in patients in the 3 and 4% range; and the third category was hospital-acquired infections and medication errors. Alarmingly, over 12% of patients who shared data for this study reported receiving a medication that they were known to have had an allergic reaction to at a previous time.


So what did these patients and families ask for? What was their feedback, after reporting these statistics? The overwhelming themes were deficient and disrespectful communication from their providers, a failure to listen, a lack of trust in their provider and in the health system, and a strong desire for shared decision-making and equal partnership.


This study resonated deeply with me. I live with one disease and two chronic conditions. At one time in my life, I discovered that one of my doctors had given me 36 different medications over the course of 9 months, when in the end the correct treatment was to remove me from the one medication that I had been taking consistently during this time. Not only was there was an obvious financial cost to my doctor’s decisions during this time, but many of the medications he prescribed were highly addictive and pushed my body into a dangerous rebound cycle – which landed me continuously in the hospital during these months. I ultimately had to be sent to a hospital across the country to get detoxed and stabilized.  


People make mistakes, doctors among them – most patients understand this and can even accept it, if there is clear and respectful communication. I remember being so frustrated at my doctor’s absolute certainty in his decisions, which left no room for my input. It wasn’t until a real crisis happened that he pulled my records, saw my medication history, and in his one moment of honesty and humility, admitted that he didn’t know how to help me and that he had prescribed far too many medications. It was then that he referred me to a clinic out of state, which was – in my opinion – the single best decision he ever made. As this study affirms, clinicians are often afraid of admitting fault or being honest – but those are the conversations that we as patients most value and often cause us to think most highly of them.  


The following quotes are pulled directly from the BMJ article:


[A] significant number of open narratives . . . expressed a desperate need for answers that never came. Patients and families who did have a provider who acknowledged fault and apologised expressed a sense of closure that other respondents did not.  “ ‘She [physician] replied, ‘Of course it was my fault, it was entirely my fault. Who else’s fault could it have been?’ This made me think the world of her. I didn’t take it as an apology, and I didn’t think it indicated mistake or negligence. I took it as a statement that my doctor felt responsible for me. (emphasis mine)


Patients and their families wanted to partner with their providers and were asking providers to embrace a patient-centred approach to their care.  “I would like staff . . . to realize that the patient is stressed. They need information, they need choices and they need the right to control their own treatment (if they are capable) or designate someone to take care of that.”


Many of the problems identified in the BMJ study are system issues – a lack of accountability, joy and meaning in the workplace, a healthcare culture that is still too paternalistic and lacking a profound respect for the humanity of all people. It therefore makes sense to put systems in place to make it easier for providers to give patients what they are asking for – a listening ear, respect, information, the freedom to make their own choices, partnership – both with them and with their families and loved ones, etc.


Doctella is one useful tool that hospitals and healthcare systems can use to strengthen partnership between patients and their providers and encourage shared decision-making. Doctella’s mobile and web platform provides comprehensive, evidence-based checklists of questions that patients should ask their doctor and health care team before, during, and after surgery. These questions are designed to empower patients with information and help them advocate for their own health care preferences and safety. Doctella works directly with surgeons to customize these checklists with answers to each question.


The issues identified in the BMJ study are not going away overnight; they are complex and deeply rooted in the culture of many healthcare systems. While the burden is definitely on the provider to provide safe, equitable, and quality care, patients like me can use tools like Doctella to advocate for themselves and demonstrate their willingness and ability to partner with their health care provider.

References

Frederick S Southwick, Frederick S; Cranley, Nicole M; Hallisy, Julia A. A patient-initiated voluntary online survey of adverse medical events: the perspective of 696 injured patients and families. BMJ Quality & Safety. Published June 19, 2015. Available at http://qualitysafety.bmj.com/content/early/2015/06/19/bmjqs-2015-003980.full