My post to the MPD Support Listserve

Below, I have copied and pasted a post I made to a myeloproliferative disorders (MPD) support listserve.

In 2005, I was diagnosed with polycythemia vera, a member of the MPD family of disorders. Like other chronic conditions, these disorders are associated with a variety of symptoms that effect quality of life and function. After my diagnosis, I found the list online and have been a regular reader and contributer since. The MPD Support list provides subscribers with an opportunity to ask questions, share knowledge and experience, learn about the latest research and clinical trials, and share support.

I, personally, have recieved invaluable information and suppoprt from other members of the MPD support list. I have also had an opportunity to offer my perspective as a physician-educator. Quite often, members of the list raise concerns or issues about their interactions with clinicians, especially their clinicians. In response to a post about a particularly problematic interaction witha doc, I shared the following post. Visit the listserve at http://listserv.aol.com/archives/mpd-support-l.html to gain insight into the benefits of such online support groups. See also the resources at the end of the post.

Here is my post from July, 2008:

Unfortunately, all too often, we feel unheard, or even worse, dismissed by physicians who don't understand or value the importance of OUR knowledge, expertise, experience regarding our illness. Docs are not only failing to hear, connect and respond to the needs of patients. As Axxxx pointed out, docs who fail to engage and enlist the patient in care miss, or fail to collect, key information that is essential to diagnosis and treatment planning. This problem not only leads to anger, dissatisfaction and other justifiable responses (such as Exxxx's), it also leads to poor clinical outcomes. As a patient, I have had my own share of problematic interactions with docs. On the other hand, I have had some good experiences as well. As a physician and teacher of other clinicians, my whole career has been dedicated to helping students and clinicians to appreciate the importance of using effective communication. We have a long way to go.... but I have not given up on trying.

So, Exxxx (and others)... we (clinicians)... need to hear you.... respect you... appreciate you.... and acknowledge your expertise... as well as respond to your needs. And we (clinicians) also need to take advantage of listserves like this one, as well as other ways in which patients can assist each other to address the problems and needs associated with having a chronic condition. Cxxxx's advice to bring a family member, or other companion, to health care visits is a wonderful idea. It helps to have another set of ears, and an advocate with us to increase the chances that we (patients) will be get needs met and questions addressed.

I have found a couple of wonderful organizations and programs that are striving to enhance patients' capacity to manage their health conditions, as well as their engagement in the process of improving care. See the websites for the Institute for Family Centered Care (www. familycenteredcare. org (http://www.familycenteredcare.org)) and New Health Partnerships (www.newhealthpartnerships.org (http://www.newhealthpartnerships.org)). I have had the pleasure of working closely with both of these organizations and can vouch for their value to patients, clinicians and health care systems. You will find lots of good resources. [Rxxxx.. there may be some ways that we can create links to these sites from our websites].I would love to have the opportunity to serve as a source of support of members of this list who would like help forging effective partnerships with their health care providers. However, the best advice will come not from me, but from other members of this community who can share the strategies that have worked for them. Feel free however to write to me on the list as well as offline (goldsteinm@aol.com)

Michael PV since 1/2006, asa, phlebotomy

Comment to a Paulene Chen Column

The post below was originally made on a NYT Blog, "Do Doctors Have Time for Empathy?" (http://well.blogs.nytimes.com/2008/09/25/do-doctors-have-time-for-empathy/)
that was linked to a column written by Paulene Chen, MD. Dr. Chen, a transplant surgeon, has a wonderful column, Doctor and Patient, that appears regularly in the NYT. The original column was entitled, Taking Time for Empathy, http://www.nytimes.com/2008/09/26/health/chen25.html

I recommend reading Dr. Chen's columns, as well as the comments available for each column. See also the links listed at the end of my post.

Here is the post:

I hope this does not sound self-serving. My entire professional life as a physican, teacher, researcher, consultant has been devoted to promoting empathy and patient and family-centered care within the context of clinician-patient interactions. I am passionate about empathy.
So, soon after getting an e-mail with a link to Dr. Chen’s moving column, I eagerly read every word of every comment listed here. I found myself resonating with many comments….especially by those of you who were willing to share their stories about their experience as patients and family members.

As Drs. Back, Chen and others have noted in their comments, there is now a growing body of research indicating that empathy matters. Clinician empathy is associated with a range of outcomes including not only patient satisfaction and trust, but also follow-through with medical recommendations and improved health care status.

There is also a growing evidence base indicating that empathy can indeed by taught, at any level, even years after completing professional training. Training is necessary but not sufficient. Even though most schools have courses in clinician-patient communication - I used to help run one - the “hidden curriculum, which refers to negative role-modeling from less enlightened faculty can undermine more formal educational opportunities. As several physicians have mentioned on in this thread, it was the example of their mentors that had the most lasting impression on them. We need more caring, empathic medical faculty (like Drs. Back and Chen) who walk the walk, as well as talk the talk.

I could go on…but I rather read what you all are writing. Thanks so much for this opportunity to read and respond.

BTW, if anyone wants to learn about efforts to teach empathy and other core communication skills to health care professionals see: http://www.healthcarecomm.org/ and http://www.aachonline.org/.

Michael Goldstein
From Pauline Chen: Thank you, Dr. Goldstein, for all your important and hopeful work in this area and for including those links.— Michael Goldstein

My First Post

With much trepidation, I write this first post to my own blog. I have to admit that, though I have been hesitant to create a blog, I have secretly wanted to have a public space to share my views.

For a long time, I have been been a passionate advocate for patient and family-centered health care and have spent the last 25 years trying to learn, and teach, skills that foster strong clinician-patient relationships. I have been very fortunate to have had many wonderful teachers, mentors, colleagues and patients who have helped me along the way. Though I believe I have become a pretty decent communicator, and some might say a very good teacher, I am humble enough to realize that I still have a lot to learn

In my efforts to enhance my own skills as a clinician and educator, I have hungrily sought out training, scoured the clinician-patient communication research literature, conducted some research myself and experimented with a variety of teaching techniques and formats. Relatively early on in my personal journey as a clinician-educator, I realized that the most basic skills were also the most important. If we can't communicate well, can't connect with patients on a personal level, can't understand the patient's concerns, how can we hope to help them heal, cope and recover?

The most basic skills are linked to what my colleagues and friends Steven Cole and Julian Bird have call the 3 functions, or tasks, of the clinician-patient encounter (which I have adapted a bit):

1. Eliciting the patient's story/problems/concerns/needs
2. Building a strong clinician-patient relationship
3. Developing a shared understanding of the problem/condition and collaborating on a plan for treatment and self-management

Each of these tasks can be accomplished though the use of specific skills....a long list of skills i might add, though some are more basic than others.

Empathy, in my humble opinion, is THE most important and powerful skill that clinicians can employ to enhance communication and forge strong healing relationships with patients and families. Empathy helps us to truly understand the experience of patients so we can ultimately help them. Through empathy, we strive to "stand in another's shoes" and see the world through their eyes. To be truly empathic this requires us to maintain an open heart and an open mind. This is not easy....and requires clinicians to be willing to spend the time it takes to understand, remain relentlessly curious and suspend all judgement. However, the payoff is immense....shared understanding, stronger relationships, and even better diagnosis and treatment outcomes.

So, I continue striving...and learning...and sharing...now here as well.

Michael