October 26, 2014

"I Don't Do Death"

"I don't do death" a physician once told me. The culture of modern medicine asks us to embrace the promise that cure is always possible and death is a failure of the health care system or the inadequate skill of a physician or nurse. It is my hope that together we can change our current culture of medicine by expanding our expectation that our students, residents and fellows are trained with the same rigor in high touch medicine as they are in high tech medicine -- so all healthcare professionals "do death" AND "do life" with compassion and skill. It has been a year since I wrote the following essay for Cognoscenti (WBUR) . Today, I again returned to the Massachusetts General Hospital for the 2014 Pediatric Memorial Service, so please indulge me in this redux. I welcome your thoughts and comments. ~ Pam

Each year, early in October, a letter arrives with the return address of Massachusetts General Hospital, 55 Fruit St, Boston, Mass. I know immediately what the envelope contains and I pause and reflect for a few moments before I open it. Inside is an invitation to return to the place where my son, Nick, was treated for a deadly form of cancer when he was 14. We, as a family, also spent many days, weeks, months in this place: crying and laughing; watching fireworks magically unfurl in the dark sky over the Esplanade from windows on the 18th floor of the Ellison Building; waiting in the subterranean operating room holding areas in the warrens beneath the hospital; exploring the empty hallways late at night like the actors in “A Night at the Museum”; holding impromptu guitar jams in Nick’s hospital room; and ringing in the new year with noisemakers, shrimp cocktail and sparkling cider with hospital staff who drew the short straw and had to work on New Year’s Eve.
 
Perhaps learning to step into the full spectrum of life and death is the meaning that the children who didn’t survive bring to the practice of medicine.

The author pictured with her son Nick in 1997. (Courtesy)Nick died 12 years ago, so why do I still return to this place each year? It is because Nick, like the other children who were cared for in this huge, often anonymous institution are not forgotten — they are remembered and honored year after year with the annual Pediatric Memorial Service. In this medical mecca, children are not supposed to die. We are fortunate to have some of the best and brightest medical institutions in the world at our doorstep. Reports of miraculous new cures abound in the media, but there are some children who are not the success stories that are highlighted in hospitals’ marketing materials.

They are the children who didn’t survive. Those of us who receive an invitation to return to MGH each year for the Pediatric Memorial Service are a disparate group. Some of our children died when they were adolescents, some when they were in early childhood. Some died from a chronic illness, some from an acute infection or disease, and others suddenly by an accident. We come from different walks of life and professions. We speak different languages. Yet, on this day, year after year, alongside the staff who cared for our children, the barriers are lifted and we are all together as human beings, remembering the stories, sharing a hug, speaking our children’s names, and trying to find meaning in loss. Collectively, we understand the unique grief of losing a child.

Early in my professional career as a nurse, I heard a young physician say, “I don’t do death.” I’m not sure what this statement really meant — perhaps that somehow his superior knowledge could forestall death permanently? — but beyond its arrogance, it spoke of fear and hopelessness. As a society we are very isolated from pediatric death. We are fortunate that in the span of a few short decades we have seen a dramatic decrease in childhood deaths due to vaccines, antibiotics, and advances in medical treatments.
But this decrease has created a void in our health care professionals’ ability to know how to deliver care when finding a cure is no longer an option. Our medical and nurse training programs don’t “do death” well either, especially around societal taboos.

A physician at this year’s memorial service gave me hope for the future when she commented that her role as a doctor is to walk the journey with her patients and families and this includes the full spectrum of life and death. We look to our healers to cure us with the modern arsenal of medicine at their disposal, but when a happy ending is no longer possible, shouldn’t it also be their role to help guide us through the fear of the unknown and unthinkable, especially in pediatrics? Perhaps learning to step into the full spectrum of life and death is the meaning that the children who didn’t survive bring to the practice of medicine. Our kids have become the teachers, no matter how short their lives may have been. Their legacy is to continue to teach the healers how to walk alongside those who are confronting the unimaginable and unbearable with grace, humility and humanity.

So, I guess I keep coming back to walk through the doors of the Massachusetts General Hospital year after year to remember, share a story, and to say thank you for honoring these great teachers who keep medicine honest, healing and humble — the kids who didn’t survive.

http://cognoscenti.wbur.org/2013/11/05/pediatric-death-pamela-katz-ressler

August 19, 2014

Discussing Social Media and End of Life

I have been on a wonderful whirlwind tour of listening, sharing, and discussion in online forums this summer in preparation of the upcoming MedicineX panel I will be moderating with my rock-star panelists -- @SusannahFox, @MeredithGould and @Colleen_Young on September 7. (To learn more about the inception of our panel and follow our "flipped classroom" model, please take a look at the Storify that Susannah Fox has compiled)

This week is no exception, as I will be guest hosting the always engaging and robust Tweet Chat #HPM (Hospice and Palliative Medicine). I hope to pose some questions and listen to the #HPM community regarding how social media is being used and perceived at the end of life. This is a complex and multi-layered area, filled with cultural stigma, fear, courage, vulnerability and ethics. Do we afford the same level of discussion and engagement when one shares about end of life as when one shares about other health concerns? What about when family members are posting about their loved ones at end of life (NPR's Scott Simon tweeted about the experience of his mother's death)? What about choices -- is there subtle and not so subtle bullying that occurs when treatment options do not align with other members of the online community?  I don't have answers, but I am open to listening, learning and sharing with others on this topic -- please join in #HPM at 9:00 PM ET/6:00 PM PT on Wednesday, August 20--newcomers welcome!

Here is the topic rundown for the August 20 #HPM chat:

T1 Do we have different standards in the use of social media for those at the end of life than for those who are in active treatment for a disease?

T2 Who determines appropriate use of social media in a situation when a family member is doing the posting on social media/networking sites (Facebook, Blogs, Twitter, etc.) and not the patient?

T3 Are there ethical issues that we need to think about?

CT: Closing thoughts

For background info:
Communicating the Experience of Illness in the Digital Age
Storify by Susannah Fox



July 15, 2014

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.



July 4, 2014

Summer Thunder

As we enter the steamy months of summer, everything seems to expand and become larger than life, including rain storms. There is something awe-inspiring, fear-provoking, and finally soothing when listening to a summer rain storm. Perhaps not so unlike our thoughts and emotions? So, for this very rainy, awe-inspiring, reading a book on the couch, kind of 4th of July, I share with you a mindful haiku...

Rumblings of thunder
Now the rain's steady cadence
Listening to summer

May 4, 2014

Hello Springtime

Isn't it interesting how trees covered in white evoke thoughts and emotion? Heavy with snow or laden with blossoms, one suggests the introspection of winter and the other the opening of possibility of spring. Enjoy the difference.