Monday, August 9, 2010

Wanted: Your stories

Last year Columbia University launched the first graduate program in Narrative Medicine, noting that "our modern medical system has all but forgotten the critical importance of stories: stories of suffering, stories of healing, stories of the relationships that tie patients to their clinicians."

In an earlier Journal of the American Medical Association article, Dr. Rita Charon, founder of the new program, describes Narrative Medicine like this: "Along with scientific ability, physicians need the ability to listen to the narratives of the patient, grasp and honour their meanings, and be moved to act on the patient's behalf."

The new masters program -- targeted to doctors, nurses, social workers, therapists and other health professionals -- includes study of literature, reflective writing and interpretation of illness narratives with the goal of better listening to, and understanding, patient stories.

I think "disability" could be substituted for the word "illness."

Here's where you come in.

If you're a parent:

1. Describe the best experience you had with a doctor, nurse, therapist or other health professional working with your child.

2. What did the professional do (or not do) to make this a positive, empowering experience?

3. What could other professionals learn from this to improve care?

If you're a professional:

1. Describe the best experience you had with the parent of a child you were working with.

2. What did the parent do (or not do) that supported you in providing the best care?

3. What could other parents learn from this?

I can't wait to hear your answers and would love to share some in the December print issue of BLOOM. Let us know where you're writing from. Thanks!


We have had the pleasure of - mainly - exceptional care (with the odd misinformed practitioner out there!) Generally, the physicians who impress me most are those who have a strong mindset based upon a Family-Centred Care approach; after-all, it is the family who knows the child best, will be his/her most continued advocate and supporter throughout life. Working alongside families to provide the best care, opportunities and teaching advocacy skills is immeasurable in its value!
We are located in Alberta, Canada. There is have been fine pediatric optometrist, dentist and pediatrician(s) working with us. Those who ask the CHILD what their opinion is; no matter how developmentally delayed an individual may present, it is difficult to measure cognitive skills and awareness and a physician who takes time to consider this truth and respects the individual is worthy of their profession. : )


I have the type of story you're looking for, as it may also be used to further or champion the emergence of social media within the healthcare system. Truth be told, "I had a feeling that you wished to argue that the evolution of "social media is not only vital to patients, but beneficial to heathcare professionals across the board, in both their personal and professional lives. For thoose who doubt my words, one must only walk through the doors of Holland Bloorview to realize that, "A dedicated perfessional and an utterly wonderful human being are truly one of the same."

Although I'll try to put something together for you to read, I want you to know that you could argue this point, in favor of social media, at next month's panel by simply using your recent experiece with Ben's hopitalization. Please believe, "You have all that you need."

Never be afraid to be brilliant,

Matt Kamaratakis

(Mine will probably be VERY long winded! Just a warning!)

My daughter was born at 30 weeks gestation at St. Michael's Hospital in Toronto. The day before she was born, the head of the NICU- Dr. Tony Barazino came to visit me in my hospital room. He introduced himself and offered a tour of the NICU to see other 30 weekers and how they were fairing in the NICU. Throughout our 5 week stay in the NICU, Dr. Barazino seemed to remember my daughter's name (bonus points in my book since there are so many patients) and also was assigned to her care after discharge.

We got along well. He always had Jillian's best interests in mind. Got us involved with early intervention and now a referral to Holland Bloorview.

He has always been around for us as a family. He has also given me his pager number/cell phone number and e-mail address after a not so great experience at Sick Kids (I had just called to see if he wanted any additional tests ordered)

I have broken down in his office twice and he has been SO helpful and wonderful (I usually save my break downs for home!) And has used Jillian as a "test case" for med students.

I don't think doctors/therapists who get good feedback hear it enough. He has made my life with a child with special needs a lot easier.

Thanks everyone for your comments! I hope we will hear from some professionals.

Cheryl -- it's wonderful to hear about your NICU doctor. If only professionals knew the power they have to either "build" a family up, empowering them, or tear them down -- by not respecting/valuing the child with special needs or minimizing the role of parents.

I have a few examples of excellent experiences we've had with a few different professionals:

1. The first pediatrician who saw Ben at 3 days post hospital. His words and actions communicated that Ben was a sacred being worthy of celebration and congratulations (vs. the ped who saw him in hospital and looked at him like he was a piece of broken machinery -- never picking him up -- used stigmatizing language, made inappropriate jokes and left us in the lurch without a referral.

The community pediatrician modelled that this was a child worthy of great respect. He picked him up and held him as a precious vase, looking right in his eyes. He engaged with Ben and delighted in him. When I first called his office and listed off the shopping list of things "wrong" with my child to the nurse, he came to the phone and boomed "Congratulations!" -- based on the reaction from professionals at the hospital, I assumed he had picked up the wrong line.

He never sugar-coated anything about Ben probably having a syndrome, but he made us feel hopeful and capable and confident. We left feeling like he had "given" us our son back.

2. Like Cheryl's doctor, Ben's recent surgeon responded promptly to e-mail messages. Obviously e-mail is something that a parent/patient can't abuse, but the reassurance it provides a parent to hear back quickly on an important concern related to a recent surgery is huge. Again, a tool for empowering parents when used responsibly.

3. When your child is hospitalized, it can be very lonely to spend so much time at the hospital -- particularly on weekends when a large part of the hospital shuts down and some inpatients go home. The nurses on the unit are a tremendous support in boosting your spirits. We also had some fabulous student nurses -- people who were passionate and eager and willing to go the second mile for their patients. They demonstrated in a million little actions that they truly cared. They took the time to get to know our son, even though he doesn't communicate traditionally. They made it clear they valued him.

4. Professionals who work well as teams. When Ben arrived at Holland Bloorview in a body cast and it was determined his wounds were oozing and had to be attended to (so the cast had to be cut off), a wonderful team of clinical nurse educator, nurse, child life specialists, and an orthotist swung into action.

When I came down to the treatment room I was amazed to find Ben relaxed, with fibre optic lights draped over his cast and one of his favourite Star Wars movies on the screen above (thank you child life!)

He was surrounded by this team of experts (wound experts, cast expert, child experts) who worked together to keep his anxiety down.

5. During our recent inpatient stay a pharmacist came to our room to share hand-outs about side effects of medicine and was easily available by phone.

6. Recreation therapists who bring normalcy to the hospitalized child's life with cool activities that get them out of their rooms, active and socializing. These were a life-saver in the evenings and on weekends.

7. Physios, who are able to get the hard stuff done, even though it's painful, knowing what is necessary to push a child's rehab forward.

I'm amazed that they return to the rehab gyms upbeat everyday, despite having to work with children who are resisting or in pain.

Louise I love your description of the team at bloorview in action.
I was so impressed with the inpatient units when I worked as a researcher last spring, but I know parental experience can be different and so am very glad to hear such a wonderful experience for Ben.

It always amazes me that people can have such different experiences with the same doctors. We have had a very disappointing experience with the doctor Cheryl has such a great experience with. I am glad to know our experience is not typical.

Hi Lisa! I'm glad you wrote.

It makes sense that people could have different experiences with the same professionals. There are probably so many variables: how personalities mesh; how much stress both professional and parent have experienced that day; not having the time that would be optimal to address all of the parents' concerns. I'm sure professionals have bad days -- or days where it's hard to remain positive and upbeat.

I wish we would hear from a professional to shed light on this!

I agree with your comment just above, Louise. Many variables. Before I even perused the comments my first thought was how impossible using 'narratives' is in medicine that is practiced in 20-minute scheduled minute visits. That is the norm for most pt. visits with MDs here. I am in Texas.

Locally one of our developmental pediatricians led a grant-funded project connecting medical students with families of children with diagnoses. Time to develop a relationship and understand the life of the family. The change was made in the few individuals who participated. I suspect this 'movement' will expand slowly.

Seems to me one would only need to peruse the blogosphere to gather many stories of families.

Thanks for the plug to physios (I am one). Honestly, I have not have difficulty being upbeat or 'returning to the gym' for most of my 30 year career. I think if one is well-matched to the profession - upbeat is natural.

The advantage therapists have over physicians is more time with the patient, more time to develop a relationship - which is meaningful to both.


Thanks so much for your insights Barbara! I'm hoping to be able to interview Rita Charon, who heads the NM program and has been a long-time doctor, to understand better how this model can work within brutal time constraints.

Holland Bloorview has a similar program to the one you mentioned where med students get to visit with families in their homes to understand better their issues. I know Amy Julia Becker, who posts here, is part of a program where they regularly have a medical student over for dinner to spend a few hours with her family. We've participated in a similar program with U of T's physio students -- they came for a couple of hours to our house and seemed to really value the discussion. I would like to be more involved in this kind of education, now that I think about it.

That's an important point about therapists having more time with the child/more of an opportunity to develop a relationship.

I guess one of the most important things you have as a physio is perspective on the rehab process: you've seen so many kids through the journey that you can remain upbeat even when the going gets tough. That's so critical, because it's easy for parents to falter when their child experiences pain.

In your experience, what qualities in parents support you in providing the best care? How can parents be a positive force in the therapist relationship?


Perhaps a reason I am 'upbeat' is that I have seen so many different ways that a parent can contribute to results in the therapy process. I basically work with what I get, er, who I meet. There is no absolute of 'best care' in my book. That is something that I cannot narrowly define.

I try to teach parents (everyone) that therapy is not like a medicine despite the fact that it is provided in very much like a 'pill' fashion (2x/week dosage). So long as a parent views PT or OT (I am an OT also) as a discreet dose of seemingly magical technique that only occurs under the hands of a therapist....well, lets just say they have low potential for 'positive force'. Parents who seek to extend the benefits of therapy by adjusting their lifestyle can be a positive force in the therapist relationship (with the child?)

No, I am not from Canada. Born and raised in Texas. :) Barbara

Hello! I've been browsing your blog and think it's just wonderful!! =) I don't really have any personal experiences to share. I've been looking into parenting of special needs children after being introduced to "There's Something About Daniel" by Robyn Stecher. I found the 17 stories about the author and her son to be inspirational and just wanted to look into the topic further. Thanks for your posts!