Big, brave medicine and powerful little acts : 'they go the extra step and that's huge'

Just after seven each morning I get an email from Daily Good. Each begins with a quote, shares a story and ends with a thought on our little acts. Recently it seems there has been an uptick in articles relating to health care challenges, here are the last three from the past week.

Twelve people at multiple medical centres in several different cities swap organs in a domino donor transplant never before attempted on this scale so that five people can receive compatible transplants and a chance at life.

From a 9 year old's school assignment titled 'If I Had Three Wishes' comes Tyler's Totes: "The Smiths didn't have any grand plans, just Tanner's guiding principle: to make kids with cancer laugh. Kathy contacted a sorority sister who worked in an Atlanta-area hospital for advice. She learned that little kids received plenty of support from outside groups, but preteens and teenagers were sort of the forgotten demographic. Buoyed by the idea of helping kids the same age as Tanner, the family decided to gather things to brighten hospital rooms, and toys that would fill an otherwise lonely day. The Smiths put everything in tote bags so kids could carry their wares from treatment to treatment."

And this morning the power of little acts of kindness, an ironworkers tribute that has kids and parents at Dana Farber smiling as they look over at the beams of the Yawkey Centre:
"It has become a beloved ritual at Dana-Farber's Cancer Institute, where they are building a new facility. Every day, children who come to the clinic write their names on sheets of paper and tape them to the windows of the walkway for ironworkers to see. And, every day, the ironworkers paint the names onto I-beams and hoist them into place as they add floors to the new 14-story Yawkey Center for Cancer Care. "It's fabulous," said 18-month-old Kristen Hoenshell's mother, Elizabeth, as she held her daughter and marveled at the rainbow of names. "It's just a simple little act that means so much....They don't have to do this, the guys. They could just do their job and do a good job at it and give us a building that we can get treatment at, but they go the extra step and that's huge."


Narrative Medicine - Dr Rita Charon at Columbia

Several nurse educators at Sickkids have been very helpful to me in better understanding how nurses relate to and support patients and parents. One item particularly struck me in a binder of training materials and that was a powerpoint presentation focused on the importance of really listening to the patient/family and helping them recount their story or narrative to medical staff. Similarly, parent involvement at the hospital is always grounded in the story of care experienced by the family. However, no matter how empathetic your core nurses are, some of the most lasting impressions of care will be created by the doctors that help families chart options, make decisions, and report on the outcomes of proceedures and next steps. So I found an interview with Dr Rita Charon, Director of the Narrative Medicine Program, College of Physicians and Surgeons of Columbia University, quite fascinating. Here she describes how she started writing down her patient stories and then sharing them with the patients and advocates creation of a "Parallel Chart" where staff stories can be recorded (and this would similarly be great for parents).
"With the encouragement of literary scholars Joanne Trautmann Banks and Kathryn Montgomery, I found myself writing about my patients in order to understand what they were telling me, because I learned that thoughts and sensations have to achieve the status of language before they can be useful to anybody. I then found myself showing my patients what I had written about them so as to make sure I had heard them correctly. "This is what I think you told me in the office last month. Did I get it straight?" And I found that patients were grateful for my having done this writing, not only as a sign that I tried to understand them but also for the chance to say, after reading my little summaries, "Well, we left something out."

At the same time, I coached my medical students and colleagues in writing reflectively about their practices to more accurately understand what their patients go through and also what they themselves endure in the care of the sick. I asked students and residents to keep what I called "Parallel Charts" on the patients in their care. We all know what gets written in the hospital chart or the office chart. However, there are critically important aspects of the care of patients that do not belong in the hospital chart, but that, I submit, have to be written somewhere. In the Parallel Chart, students and doctors write about their own anguish in caring for patients as well as their victory when things go well, their rage and mourning and dread, their fear of mistakes, their inability to know what to do, their sense of loss as patients sicken, no matter what they do. And when students or doctors read to one another what they have written in the Parallel Chart, they take heart that they are not alone in their sadness and their dread, their sense of isolation among sick and dying persons diminishes, and they feel accompanied by their colleagues on their journeys."
Dr Charon's vision of narrative medicine can support staff who feel they need to develop an emotional distance as a coping mechanism to work closely with patients who frequently die.
"Narrative medicine brings a useful set of skills, tools, and perspectives to all doctors. Not only does it propose an ideal of medical care -- attentive, attuned, reflective, altruistic, loyal, able to witness others’ suffering and honor their narratives -- that can inspire us all to better medicine, it also donates the methods by which to grow toward those ideals. Any doctor and any medical student can improve his or her capacity for empathy, reflection, and professionalism through serious narrative training. More and more medical schools and medical centers are adopting narrative methods of study in reading, writing, reflecting, and bearing witness to one another’s ordeals. It is hoped that the research to understand the outcomes of these practices will keep pace with their growth. Ultimately, narrative medicine may offer promise as a means to bridge the current divides between doctors and patients, between doctors and doctors, between doctors and themselves, illuminating the common journeys upon which we all are embarked."
You can read the whole interview here including a list of Dr Charon's published work and read about The Program in Narrative Medicine at Columbia University which has introduced a Masters in Science in 2009. The mission statement of the Department is as follows: "Narrative Medicine fortifies clinical practice with the narrative competence to recognize, absorb, metabolize, interpret, and be moved by the stories of illness. Through narrative training, the Program in Narrative Medicine helps doctors, nurses, social workers, and therapists to improve the effectiveness of care by developing the capacity for attention, reflection, representation, and affiliation with patients and colleagues. Our research and outreach missions are conceptualizing, evaluating, and spear-heading these ideas and practices nationally and internationally."

Thanks to Toronto story teller Dan Yashinsky for pointing me to Dr Rita Charon's exciting work.

New parent amenities at Sickkids

There is now a laundry for parents opposite Marnie's lounge.

The Parent Resource Centre has turned on wireless for parents with their own wireless enabled laptops. You can pickup the signal on the seats outside the Centre after the Centre closes. The Centre is located opposite Shoppers Drug Mart.Kim Meighen, the Centre's coordinator, is an excellent resource for parents seeking information on hospital services.

It is also rumoured that the number on the back of a Starbucks card gives you 2 free hours access to the hotspot advertised at Starbucks. If you give it a whirl and it works let us know.

New Sickkids website launches Wednesday!

I noticed a few days ago on the homepage of Sickkids.ca that a new website will launch on Wednesday. This is exciting. I look forward to seeing what has been worked on for many years. I expect the migration of such a large amount of data and the addition of new features was a huge challenge. As part of a website initiative for TRAC-PG we were apprised by a member of Information Services that a vendor and product was about to be chosen. That was in early 2007. I am not aware of any family outreach in the planning of this new site however. I can only hope there was as different audiences really do have different priorities. I also hope there has been review of how users approach the new site and that this has lead to additional considerations being woven into the final product based on the user group feedback.

The existing site has many pages that have not been updated since 2004 and 2005. It seems that areas of the site have been updated in spurts. This is not surprising when we consider how busy all the teams are and speaks to the question of how teams allocate staff time for involvement in the website. I have seen some departments working with the page update tools to add news about clinics and conferences however these items sometimes 'stick around'. Hopefully more streamlined tools will inspire making website updates a priority for all the teams.

The search functionality also seemed to have problems with the content. There is a comprehensive staff listing that I frequently use to check a staff member's unit however it has never been clear how often these are updated. Keyword searches either bring up too little information or results that do not present a meaningful hierarchy of information. So, for example, a search based on one staff member's name who has worked at Sickkids for approximately 20 years and is involved in care, research and education brought up 1 result under "find exact phrase" (a May 2007 conference), 2 results under "find all words" (adding a page about research projects in the specific unit) and 4 results under "find partial results" (adding the person's name on the unit contact page and one other page that did not mention this person at all). Hard to see the rhyme or reason for the search results. These problems are endemic to search engines as well, as anyone who has tried comparing various search engines like Google, MSN, Yahoo etc has experienced first hand. Search modules are complex algorithms and the search engine keeping up with new content is also a challenge. I would not be surprised to see the entire Search function use an advanced third party service like Google. Hopefully the new site supports users now comfortable with Boolean search logic and operators while generally There is also currently no labels / tags at hand to give families browsing search links relevant to the specific departments.

Recently a questionnaire was posted for families on the homepage that I wrote about earlier. This is very positive. However there is no ability for a reader to feedback any kind of comment on specific content, nor quite surprisingly is there a single general feedback form. I think it would be excellent to read parent stories on the website that can help other parent's prepare for a lifetime commitment to care and best support of their children during improving health and setbacks.

To the best of my knowledge there is no private parent area or web based tools so that staff can offer detailed unit specific information to families. Nor are there web based tools for family communication as a group or one on one between family and team, such as a parent charting area allowing a virtual scratchpad, calendar, to do list, messaging etc.

I don't expect the new site will address all these issues however I am excited to see what will appear in two days.

Changes at Sickkids Foundation

All those interested in Sickkids must have wondered over the last few months how the Foundation will be effected by the economic downturn. At a donors event last year, Sickkids Foundation director Michael O'Mahoney spoke to the difficulty of fundraising in the coming year and that we would need empathy and compassion for people's circumstances while striving to help the Foundation. A Toronto Star article from last week reports that Michael and a number of other top executives are leaving the Foundation and also provides some comparative background on other challenges like rising salaries, payroll and lowering return on the dollar. You can read the full article here.

Bear With Me by Diane Flacks, Nightwood Theatre Jan 7-24



Bear With Me marks the first return to stage of Diane Flacks, writer, actor, comedian and mom, since the birth of Jonathan Purdy-Flacks in 2006.

"Bear With Me is amazing. Diane's wit is incredible. She is very, very funny and a brilliant actor. I have recommended this play to all my classes."
Marcia Blumberg (Sasha, Mia and Eve's granny and Drama Professor, York U)

"She has you in the palm of her hand."
Henriette Donner (Humanities professor, York U)

For info go to Nightwood Theatre. The theatre is not huge and the reviews have been fabulous so don't wait to get your tickets!

Jonathan Purdy-Flacks is Sickkids Patient of the month

Jonathan continues to grow and develop and amaze everyone around him.

He is the January Patient of The Month at The Sickkids Foundation!

You can also learn more about Jonathan's story at his family website here.

Yeah Jonny!