Tuesday, May 20, 2008

The Patient's Perspective on the National Patient Safety Congress -- A Transformation of Medical Relationships

As promised, the MITSS team has returned from the National Patient Safety Foundation's Annual Congress, and here are some reflections from Beth Conlin, MITSS volunteer...

The National Patient Safety Conference in Nashville was my first major patient safety event. I am a volunteer with MITSS, including helping with their outreach strategy. I am also a person who experienced medical error – the most significant being a misdiagnosed intestinal disease for the first twelve years of my life. At this conference, I saw thinking and innovation along with the acknowledgement of grief and emotion. I wanted to share a couple things that stood out for me, as a person bringing fresh eyes to the movement.

A New Openness

The field of patient safety is having an effect beyond its borders – it is changing the relationship between patients, families and medical professionals. The prevention and necessary confrontation of medical error requires changes in the system that I could already see underway. It was evident that organized responses to medical error, policies of disclosure and advocacy for apology in the wake of error are becoming mainstream in leading medical institutions. The next goal is to continue to take this effort to all institutions as it becomes the norm, and to be the beginning of patient centered care.

This type of respectful communication, openness and truth-telling has shown medical professionals and institutions that hospital data and decision-making need not remain secret. This attitude has caused the sharing of data that would never have been public before, and has the possibility to increase the quality of care. For example, Beth Israel Deaconess Deaconess Medical Center has begun to share its own evaluative data on the web.

While the data is provided in a useful form with helpful context, it has yet to have widespread use in the community. This sharing of information needs mainstreaming so that BIDMC data can be compared to other institutions locally and nationally. Outside players can also serve the public by using these data for additional research and third party evaluative sites. Until then, in classic web style, the data website’s hits pale in comparison to BIDMC CEO Paul Levy’s blog. It’s a lesson that the allure of data tends to trail compelling narrative, something that we should remember in our work with community outreach.

Kenneth Sands, Senior Vice President of Health Care Quality at Beth Israel Deaconess Medical Center, presented BIDMC’s new website for hospital quality of care data.

The Challenges

Still, the attitude of openness has not pervaded many institutions, and in particular there is still very difficult work being done at the one-on-one communication level between patients and medical professionals on the hospital floor or in practice around the country. The pre-conference program on Community Engagement from the Patient and Family Perspective specifically dealt with the challenge of how institutional attitudes seem to be generally reflected in the behavior of medical professionals. Doctors, nurses and others are pushed by institutional systems and the norms of their profession to seek the path of least resistance to care, and to not take into sufficient consideration the needs of patient and family. Strong family advocates are seen as obstacles instead of allies in quality care, and guidelines instead of patients are the center of care.

Better strategies for overall organization of care and facilitation of patient-professional communication are badly needed. One model came from the keynote by Michael Berry (Massachusetts General Hospital) and Floyd Fowler (Center for Survey Research, UMASS Boston) working together at the Foundation for Informed Medical Decision Making. They discussed their effort to create media materials, primarily videos, that help to inform patients’ critical medical decisions, and make them available through a “prescription” system that would make them a standard part of care. They also seek a system where medical decisions reflect the diversity of patient needs and values, and that makes room for the patient that can elect not to seek mainstream treatment if it’s not in their interest.

Sharing the Stories

I am also grateful to the patients and doctors who shared with me their stories of dealing with medical error and adverse medical events. These are individuals whose fortitude through extraordinarily tragic circumstances humbled me, along with their drive to make sure that the loss of a loved one, their own bodily abilities or simply their easy trust in medical treatment does matter in a positive way for the world. They all had pain and sadness, but they did not allow this to isolate them from the medical institutions and professionals that they would have been justified in uniformly condemning. Instead, they sought to engage, understand and improve the medical system. I will seek to tell my own stories, and there are resources available to help others as well, including Teaching Patient Safety: An Educator’s Guide, by Ilene Corina.

Kerry O’Connell is a construction engineer who suffered nerve damage from an incorrectly placed orthopedic screw, and through subsequent reparative surgery acquired an MRSA infection. Robin Youngson is an anesthesiologist who experienced medical error during his career, and also experienced what he saw as an uncaring medical system during his daughter’s extended hospitalization. They came together at this conference to model the patient-doctor dynamic in a unique session on fear in medical communication. And they dressed for the role – Kerry, the patient advocate, in scrubs and Robin, the doctor, in a hospital gown.

Through this change of clothes they made explicit the assumptions in their roles, the assumed power of the lab coat and the literal vulnerability of the johnnie. Kerry discussed how he took power in dealing with his doctors and confronting their responses during his care. Robin was frank about the great fear doctors have from the beginning of the training, which often stays unacknowledged through out their careers. They found they were peers, though in different roles, both coping with a difficult system. Based on this new friendship, they are forming a partnership to help change the way the medical system is run.

It’s when medical professionals, patients and families see each other and themselves as individuals, feeling and flawed human beings, that communication begins and progress is made. By working to create a system that encourages this level of communication rather than blocking or denying it, we can improve patient safety and the experiences of all in the medical system.


  1. Wow. Thank you for sharing such wonderful thoughts on this important issue. Hopefully this trend will continue to grow exponentially.

  2. I really appreciate this blog.

    My medical injury occurred almost 15 years ago, at a time when these issues simply were not acknowledged. Ever. I think it's only to our benefit that it's now being talked about.

    If I could ask a question:

    What, if anything, should a patient tell subsequent physicians? Medical injury has a way of casting a long shadow over future medical encounters, especially if it's handled badly. I became very avoidant after my injury. On my rare visits to the doctor, I'm usually tense and unhappy and on the verge of an anxiety meltdown.

    My current doctor doesn't know what happened to me and I think he's both puzzled and annoyed that the relationship isn't more productive. Weirdly enough, I actually really like him, but I don't know how much I should tell him. What if he doesn't get it? What if he trivializes it? What if he blames me for everything? What if he decides he doesn't want me as his patient anymore? I know, I know; the distrust is talking here. But it's not that easy to switch it off. Also, telling the truth would entail saying some negative things about some of his colleagues, and I'm really uncomfortable going there.

    Does he have a right to know? Would it help provide safer care? Or would it be better not to burden him with all the baggage I've been carrying around?

    I've never seen this addressed in any of my (admittedly obsessive) readings on the subject. So if you're ever looking for a future blog topic, maybe you could address it.

    Thank you for listening.

  3. Here is my patient safety story. I'm writing it in the hope that lessons can be learned ...

  4. To Anonymous:

    What a great question and thanks for putting it into words so succinctly.

    I too have pondered this on and off for years as well. The what if's....what if I don't share my experience with the MD and something goes wrong yet again will I blame myself because I didn't express myself? What if I do share my experience and the Dr., as you said "trivializes" what I have been through, or even worse portrays it as a non-issue.

    I think mulling this over in my head for years just serves to make the anxiety worse, but unfortunately I don't know what the answer is.

    It's difficult to find a Dr. who will fit the needed criteria (not that I'm even sure what that criteria "looks" like) of any patient who has experienced a medical error.

  5. thank you so much for your question...I'm never really sure how to handle it for the same reasons Jane mentioned. What I have learned is to rely on my gut as to when I might share the information. Sometimes it's sooner than I would like because I am suddenly triggered and I don't have a choice. Unfortunately, just being "the patient" can be a trigger. We all react differently, my husband for example, wants to tell everyone who is involved in my care what happened to me (and us as a family). I realize that for him this lessens his anxiety. What I am trying to say in my long winded way is I don't think there is a formula, I think it's all so individual and what we are comfortable with.

    I hope your comment creates more discussion.

  6. Hi again -

    They posted this question over on the clinician side and there've been some really good comments.

    It's so hard to know how to start the conversation, especially when you've had to keep stuffing it inside, emotionally speaking, for years.

    The reactions from the care team unfortunately were really negative. There was flippancy; there was anger directed toward me. I was cut out of the communication loop. Some key decisions were made behind my back, without my knowledge or involvement. Even trying to file a complaint with the hospital was a nightmare of noncooperation.

    My family also refuses to talk about it, and in fact they accused me of being in the wrong when I voiced my suspicions that I hadn't been told the truth. So I learned pretty early that to bring up the topic was basically an exercise in useless self-mortification; I mean, who needs to be kicked over and over when they're already down?

    I've spent years making a conscious effort not to think about it. So to contemplate the idea of openly talking about it, in a medical setting where some of the worst experiences of my life took place, is just really hard.

    Even if I never do summon up the courage to tell the doctor, it's therapeutic to be able to discuss it here. :)



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