I have a confession to make – I am a healthcare cynic. I have come to believe that patients and families are rarely treated with compassion and respect, that information can be very hard to come by in the hospital setting, and that clinicians have little time or inclination to sit, talk, and answer questions.
The Making of a Cynic
I have worked for MITSS (Medically Induced Trauma Support Services) for the past 11 years. Our focus is support for patients, families, and clinicians who have experienced an emotional toll following medical harm. Over the course of an ordinary week, I speak with people from all around the country who describe the worst that healthcare has to offer – medication errors, surgeries and procedures gone wrong, delayed diagnoses, hospital-acquired infections, just to name a few. To make matters worse, these patients and families almost always report little (if any) open and honest communication with the care team and an astounding lack of kindness and compassion following these events. I am sure that this explains my mistrust.
Healthcare: It’s Personal
Recently, my dad was hospitalized in Florida following a major heart attack. My six siblings and I flew to be with him and spent more than a week in and out of the cardiac ICU. I arrived at the hospital expecting problems with his care. And, I felt ready. After all, working in the patient safety field for all these years has yielded some benefit – I know how to advocate for myself and my family, I know what rights we have as patients, I know what kinds of questions I should be asking, and I know that we deserve to be treated with dignity and respect.
What Dignity and Respect Look Like
My dad’s medical course did not go well. Unfortunately, his condition deteriorated, and he eventually needed to be moved to hospice care. He died nearly two weeks following the heart attack — peacefully and surrounded by those who loved him most. The outcome was devastating, but the kindness, compassion, and patient/family-centered treatment he received will stay with me forever. My “skills” as a patient advocate were never called into action as the care team always seemed one step ahead. Our experience included:
- Open and honest communication about my father’s medical condition in real time (in person, telephone, email and texting)
- The care team getting to know my family (our names, what each of us did for a living, personal stressors about being away from home for an extended period)
- Family meetings with the care team that never seemed rushed
- Visiting hours any time, day or night
- Family inclusion in morning rounds
- Social workers checking in frequently to provide support (sometimes just a cup of tea or a box of tissues)
- Access to chaplaincy
By the time we were ready to leave for hospice, the hospital staff felt more like family, and we were very grateful. It is important to note, though, that my dad’s medical course was not complicated by an adverse event.
Communication and Compassion in the Most Adverse Circumstances
I am now left to wonder — why does all of this seem to go out the window once there is a question of medical harm? And, that being the case, aren’t open and honest communication and compassion even more critical following an adverse event?
The idea that organizations don’t do a good job communicating following medical harm is not only my personal observation, it is well documented in the literature. Dr. Thomas Gallagher of the University of Washington is one of the country’s leading researchers on communication with patients and families after error and how it can be improved. When I interviewed him last year, he noted:
“Despite the rhetoric about the importance of patient-centeredness in healthcare, our systems for responding to patients who are injured by healthcare have continued to focus primarily on the needs of healthcare providers and institutions and much less on truly meeting the needs of the affected patient and their family.”
Mustering the Courage to be Transparent
At a MITSS educational forum this past November, Dr. Gallagher further noted that communication breakdowns are just as harmful to patients as other kinds of errors and that, “Hospitals are transparent except when it is hard or embarrassing.” (Click here for Dr. Gallagher’s presentation from Supporting Patients and Families Following Medical Harm – Are We Missing the Boat?)
Richard Boothman, Executive Director of Clinical Safety at University of Michigan Health System, and architect of the Michigan Model, took an unflinching look at why the healthcare community is so reluctant to “reach down when someone has been hurt” in his remarkable keynote at the MITSS annual event. Boothman described UMichigan’s decade long journey toward open and honest communication following harm. He concluded that while we are still far from being patient-centered, UMichigan has learned that:
- Patients and families are far more forgiving than anyone ever thought.
- Accountability doesn’t always feel good, but it serves to drive improvement of care.
Most importantly, Boothman said, “No hospital that has had the courage to do this (a communication, apology, and resolution program) has ever gone back.” (Click here to view Richard Boothman’s keynote in its entirety).
A Vision of Unencumbered Communication and Compassion
Comedian and social critic George Carlin once said, “Inside every cynical person, there is a disappointed idealist.” I certainly hope that more hospitals have the courage to embark on a communication, apology, and resolution program. I would wish for patients and families to be treated with kindness and respect each and every time, even when it is “hard or embarrassing.” I look forward to the day when communication with care providers flows unencumbered, especially in the case of medical injury. It’s just that up until now, I have been sorely disappointed.