Grace, Love, and Caregiving Choices

Full disclosure, I am a faithful listener to WBUR in Boston and I write for WBUR's Cognoscenti Page. I especially love On Point with Tom Ashbrook -- I have been known to have "parking lot moments" when I sit in my car, radio on, engine running in my office building parking lot, just to finish listening to a topic Tom and one of his guests are discussing. Tom's inquisitive questions and gentle yet focused interviewing style have kept me company on many mornings. Like many, I was saddened to hear that he was taking an immediate leave of absence to care for his wife who is very ill. Through this intentional choice of following his heart and his compassion, Tom has become a teacher to the rest of us that it is OK to say that family caregiving is a priority and to step away, albeit temporarily, from the demands of work. Tom posted a poignant and powerful letter to explain his decision yesterday, and I am sure I am not alone in feeling gratitude that he chose to share an
explanation of this difficult time with such grace, love and compassion.

Tom, as a male, has also taken bold move by stepping into the caregiving role. Statistics show that the vast majority of family caregivers during chronic illness and end of life are women. Often these women are attempting to work outside the home and be family caregivers at the same time, because of a lack of sick time or leaves of absence in their workplace. Tom's willingness to shine light on the need for families to have the ability take time away from their paid work for the well-being of their family is a teachable moment for all of us. Tom Ashbrook has been able to make this compassionate choice for himself, his wife and family is because he has been granted a leave of absence from his employer. As the Massachusetts election results rolled in on Wednesday morning and ballot question 4 (earned sick time) was approved by voters, it made me think of Tom and his family and gave me hope that another family facing end of life issues would now also be more able to make a similar compassionate choice without financial ruin.

To live in a compassionate society, we must be compassionate beings. Thank you to Tom Ashbrook, his wife Danielle, and their family for demonstrating what grace, love, and caregiving choices look like. I wish them peace, hope, and grace today and in the days ahead, and I will be welcome Tom back into my radio-listening life when he is ready to return.

2014 Medicine X: Communicating the Experience of Illness in the Digital Age

Time on the Internet can often be measured by the millisecond. We bemoan the shallowness,brevity and sensationalism of topics that seek to capture our momentary attention on our news feeds. Yet in the early part of 2014, a controversy hit the Internet with the intensity of a meteor and then instead of rapidly burning out, gained in intensity and continued discussion. The controversy became known on the Twittersphere as #Kellergate and revolved around separate columns written by former New York Times editor, Bill Keller and his wife, Guardian columnist, Emma Keller opining on blogger Lisa Bonchek Adams' frequent use of social media as a platform for chronicling and sharing her experience of living with progressive, incurable cancer. Topics of public disclosure of illness, ethics, dignity, TMI (too much information), choices surrounding treatment and death and dying were thrown into the open forum of the Internet. Without any precedent for such public sharing in real time, dialogue became divisive and heated. What appeared to be missing from the discussion was the impact of social media tools and online communities on the large population of those living with chronic illness. Attempting to add some insight to the phenomenon of illness blogging, I wrote a piece in early 2014 for WBUR's Cognoscenti site: Memo to Bill Keller: This is Why Patients Blog About Illness

Now more than half a year later, the discussion has stepped away from the specifics of the Keller/Adams controversy and has entered into a broader conversation on the issues of disclosure, community, isolation and connection. The international conference, Medicine X, held annually at Stanford University, has deemed this an important topic for the upcoming 2014 conference and has invited me and several colleagues to present a panel discussion entitled: Communicating the Experience of Illness in the Digital Age: Reaching Beyond the Keller/Adams Controversy.  I am honored to be the moderator of this panel of amazing thoughtleaders, Susannah Fox, Meredith Gould, and Colleen Young, all pioneers in the fields of peer-to peer-health, online communities, community management and the evolution of communicating the  experience of illness in the digital space. As a panel we will attempt to examine and identify the key aspects of the larger phenomenon of communicating the experience of illness in the digital age that we hope will help inform the continued evolution of online communities.

I would welcome comments and discussion in the comment section of this blog -- more voices on this subject are needed as we prepare for the Medicine X conference panel. I hope to see many of you in Palo Alto, September 5-7. For those of you who can't attend, I will post live-streaming and Tweetchat information for Medicine X as it becomes available.

Quality of Life

Thank you to those of you who alerted me to a wonderful documentary series which aired on WBUR in Boston last week. It is beautifully written and produced, an informative view of the dilemma over end of life care in this country. The title of the documentary is Quality of Death, End of Life Care in America: Inside-Out. As I listened to the documentary I felt a more appropriate title might be Quality of Life instead of Quality of Death because even as patients, families and healthcare providers prepare for death, life continues. Perhaps our emphasis on what we DON'T want done at the end of life overshadows what we DO want done? I read an interesting article recently that proposed changing the terminology of D.N.R. (Do Not Resuscitate) to A.N.D. (Allow Natural Death). Is there is a difference in your mind between these two statements, or do you feel it is only semantics? This is difficult topic to wrestle with but one that is growing in prominence in the health care world as we confront a rapidly aging population as well as staggering healthcare costs.