A Patient's Story

 "If I have learned anything, it is that we never know when, how, or whom a serious illness will strike. If and when it does, each one of us wants not simply the best possible care for our body but for our whole being.’’  ~ Kenneth B. Schwartz

Seventeen years ago a seminal piece was published by the Boston Globe.  It was entitled: A Patient's Story, written by Boston healthcare attorney Ken Schwartz.  Ken had been diagnosed with stage 4 lung cancer and was now facing the end of his life in 1995.  Through his eloquent prose, Ken taught us all that often it is the compassion of the health care provider, the humanness of the experience, that is as important as the medication and high-tech treatments that we offer our patients. The Schwartz Center for Compassionate Healthcare was founded after Ken's death and has been doing wonderful work on ever since. Little did I know when I read A Patient's Story in 1995 that it would reflect and inform my own experiences as a mother of a terminally ill adolescent and ultimately would redirect my professional life as a passionate advocate of the integration of compassion and empathy into health care environments, for both the patient and the caregiver.

Today, the Boston Globe reflects on the past seventeen years since the publication of A Patient's Story, and of The Schwartz Center for Compassionate Healthcare's work on supporting and improving compassionate caregiving. Click here to read the article: Finding Healing for the Healers by Helen Shen.

I would love to hear your stories about compassionate caregiving or perhaps opportunities that were lost. How can we work together to ensure compassionate and empathic healthcare?  Please feel free to post your thoughts and comments on my blog.

The Other Side of the Exam Table

This week I found my self on the "other side" of the exam table as a patient confronted with a medical decision. Two weeks ago, one innocent misstep left me with a tender and slightly swollen left foot. Being the watchful waiting type, I iced, elevated, and medicated with ibuprofen. Since the foot still seemed tender and swollen after 10 days, I sought out medical advice (besides my own). An x-ray showed a stress fracture of the 2nd and 3rd metatarsals (bones on the top of my foot). I was referred out to an orthopedic surgeon for follow up. 

Now this is where I think the story gets interesting and how it relates to how health care and the decisions we make each day that impact these costs. Upon consultation with the orthopedist, it was suggested that I also have an MRI to further visualize the foot.  In the past, I would have immediately scheduled an MRI but now with a high-deductible health care insurance policy, I paused and began an initially uncomfortable discussion with my health care provider of the cost/benefit ratio of having an MRI at this time, postponing it or forgoing it completely.  I asked if the information gathered by an MRI would change the proposed treatment of the injury which had been visualized by x-ray.  When I learned that the answer was no -- that the initial treatment would be the same, I respectfully declined having an MRI at this time.  Knowing that an MRI would cost me in the neighborhood of $1000+, and this would come out of my pocket due to my deductible, certainly influenced initiating the conversation I had with my provider. Would I have made this same decision if I did not know the financial cost of an MRI or if I would not be directly impacted by the cost?  I honestly don't know, but it became apparent to me that we need to educate ourselves, providers and patients, as to the cost of health care choices with  transparency and discussion.  We have all been removed from the true costs of health care, advanced diagnostic tools and pharmaceuticals by our current health care model. What else do we "buy" with total disregard to cost? I can't think of any other product or service.  I am a staunch advocate for universal health care; excellent health care should be a right in any civilized society -- but I am also an advocate of transparency of costs so we can have thoughtful, informed discussions regarding appropriate health care choices in terms of risks, benefits and costs with our providers.  If we know the financial costs of certain procedures or diagnostic tools  as well as potential benefits will that change our behavior as health consumers or our recommendations as health care providers?  

I am mulling over these questions in my mind and would love to hear your thoughts. By the way, my decision was to forgo the MRI at this time, to wear an Aircast boot, use crutches for two weeks and then reassess with my orthopedist the need for further diagnostic workup.  This is what participatory medicine is all about.

Arts of Compassion

Mark your calendars! Arts of Compassion: Perspectives on Arts and Health is an upcoming symposium scheduled for Saturday, October 2, 2010 at the Berklee School of Music. The Longwood Symphony will also be performing after the symposium. The symposium is being sponsored by BACH (Boston Arts Consortium for Health). This promises to be a wonderful day of inspiring speakers and moving music!

Medicine in the Age of Twitter

Dr. Pauline Chen poses an interesting question in her NY Times article, Medicine in the Age of Twitter: Does online social media help or hinder patient-provider communication? If you haven't heard about Twitter, it is a new social media platform that allows users to communicate via short, 140 characters or less, "tweets" to other users. I am intrigued about the possibilities of connection, but am wary of the lack of human touch. What do you think?