Tuesday 6 February 2018


A couple of years ago I met an amazing doctor. I was speaking at the American Academy of Cerebral Palsy and Developmental Medicine conference in Fort Lauderdale and after my remarks, a gentle but insistent man approached me saying, "Hello, my name is Jim Plews-Ogan. I'm a pediatrician specializing in complex care and I am really, really interested in what you said about kindness." These are the words from my speech that drew Dr. Plews-Ogan to me:

"Over the years of Nick's many hospitalizations and clinic appointments, I don’t recall ever once anyone asking me, “What do you believe is happening to your son? How do you feel about your treatment choices? How can we support you now, given Nicholas’ realities?” I do remember saying, “I need you to be kind to me; I really need that.” In my way, I was pleading for a compassionate, honest conversation that would enable us to examine each other’s understanding of where we were as a team with Nicholas’ treatment and where we were likely to go. I wasn’t seeking certainty; I was seeking honesty, reassurance and kindness."

Jim Plews-Ogan teaches the importance of kindness in care to medical students at the University of Virginia and he blogs about his work HERE. Jim and I have kept up a friendship based on our shared interest in how kindness can be manifested to patients and their families in health care.  His work inspired me to ask families on my social media networks this question: What does kindness in health care look like? I asked families to tell me their stories about when medical professionals showed exceptional, personal kindness and how that compassionate care made a difference in their ability to manage very difficult circumstances of illness or disability.  The response was incredible. Within four hours, 57 caregivers had responded. I was in tears reading these moving accounts of extraordinary kindness. 

1. "I remember when my (adult) daughter had been in the hospital for 9 days and I was scared and exhausted. She was taken out of her room for tests and I started to weep: I had held it in for so long not wanting her to see my worry. Her busy busy nurse walked by the room and saw me crying. She came in and silently held me for about five minutes while I cried. So much beyond her call of duty, and so beautiful."

2. "We were visiting the NICU where my girls were born, after receiving the CP diagnosis. One of the neonatologists who had been a part of our journey since my twins' delivery noticed that her shoe was undone so he picked her up, put her on his lap and tied her shoe. It was honestly the cutest and still means so much."

3. "My daughter had some persistent respiratory challenges that kept escalating; and as a result she had a surgery cancelled on multiple occasions because we couldn't get her breathing stabilized. After 6 months of this, I emailed the specialist in desperation on a Saturday night because my daughter was still wheezing significantly and I was going to have to cancel surgery again. Well, he called me back within 1/2 an hour of emailing (from his home), reassured me that we would find a way to make the surgery happen, contacted all her specialists, got a medication plan and reserved an ICU bed...then followed up with me and got her in for a check-up just before surgery to make sure our plan had worked. Which it did... He then danced with my daughter at her follow-up appointment. I will never, ever forget his kindness."

4. "My son was in the ICU for a long time. We developed an amazing relationship with one doctor in particular. On rounds one day she asked the group of residents if they thought my son was retaining water. After a few residents tried to answer, she interjected and said "why don't you ask mom." She respected us and valued our opinion. She used the moment to teach the future generation how to value parents. This to me was real kindness."
5. "I have one with my “typically developing” daughter, L. She was about 3 at the time, making J (her complex sister) about 1.5. I had taken L. out for a walk and she fell on the concrete. She landed on her elbow. She immediately started babying it, but I could tell nothing major was happening. Still, she insisted on going to the hospital. Because she had seen how I would drop everything to take J. to the ER, generally because of lung infections/pneumonia. I kept telling L. she was fine. When she wasn’t buying that, I prepared her saying that we’d be at Emerg FOR HOURS. She was still adamant she needed to go. I went to triage and said “Listen. I think my daughter is fine but she sees me drop everything to take her sister to the hospital on almost a bi-weekly basis. I just need someone to prove that I’m willing to do the same for her as I do for her sister. I have told her that we’re going to be here for hours so please make us wait”. The doc overheard what I was doing and took us almost immediately. Checked her elbow and made sure everything was ok and it was just a bruise. Then wrote her a script for 24 hrs of ice cream and cuddle time on the couch. He applauded me for how I handled it and wished other parents would do the same. I said I felt like I was abusing the system. But frankly, L never asked to go to the doc again until she actually broke her arm at the end of grade 2."

6. "My daughters first kiss came from her primary NICU Nurse. As my daughter was born at 25 weeks keeping her free from infection was my top priority I was so afraid to even breathe around my daughter never mind kissing her. I will never forget that exact moment she leaned over and kissed the top of her head. That sweet moment reminded me what the importance of being a Mom was even though it came with risks."

7. "I think that we find little acts of kindness all around us, every day. My youngest makes it so very easy. The IV nurse that danced along with his favourite song (and he still looks forward to seeing him), the child life specialist that walked an important DVD down to us in the ER from the ward, the volunteer that got us TWO mats to play on in our ward room, the nurse that brought me water and cookies because leaving the room to get something to eat was too scary, the birthday banner put on a room door and signed by staff overnight. Not very grand gestures but they make the world of difference."

8. And from the daughter of her elderly mother in hospice: "When an over worked, stressed out hospice nurse was inappropriately cheerful and made some silly comments and carelessly caused some minor pain to my dying mother, I was at the end of my wits and just sobbed at her thoughtlessness. Another nurse, seeing my reaction and sadness, hugged me and comforted me in the moment and then later explained that the hurt the other nurse had caused had not been intentional and explained a bit about that nurse to me. She didn’t excuse her actions but she explained some of that nurse's normally exceptional caring qualities to me without demeaning her fellow caregiver. It really eased and comforted me so that I was able to come away from the whole episode with a different perspective but still acknowledge that my upset was valid and understandable. I was even able to include the problem nurse in my individual thank you’s to all the nurses that had been so good to both my mother and myself at that tremendously heartbreaking time in our lives. The whole experience was truly remarkable."

9. "The male student nurse who gently washed my daughters hair after hip surgery. He was on his break."

These are only a few examples of the many and exceptionally moving examples of kindness in health care that were shared online. From these, I've learned that medical professionals can be kind in their actions and words by: 

  • Acknowledging that family caregivers are experts and care providers
  • Going 'above and beyond' in their efforts to REASSURE and offer HOPE - and they do it OFTEN
  • Allow and enable ACCESS to complex care caregivers via email or phone (believe me, we do not abuse this access - we only contact health care professionals for advice when we REALLY need it) Dr. Plews-Ogan teaches this by example to his students - has been doing house calls for his patients throughout his 30 year career in medicine
  • Offer TOUCH (hand holding, hugs to both caregivers and to our loved ones - see experience #1 above)
  • Offer FOOD (cups of tea, for example)
  • Offer RESPITE (when staff notice that we are exhausted and offer to sit with our loved one so we can get a break)
  • HUMANIZE our loved ones by marking occasions such as birthdays, ceremonies for palliative patients, etc.
  • PALLIATIVE care professionals seem to know best how to deliver care with exceptional kindness. Other disciplines in health can learn from them. 
These are just a few of the ways that health care professionals offer kindness to patients every day. I will be sharing all the responses I've received with Dr. Plews-Ogan. He will share them in turn with his medical students. And I'm thrilled to add that kindness is in the news today with the announcement of an exciting new book The Power of Kindness by Dr. Brian Goldman. Dr. Goldman is an emergency room physician and the host of the wonderful White Coat, Black Art on CBC radio. I never miss an episode. 

Thank you to every doctor, nurse, social worker, personal support worker or therapist who has offered kindness in care to patients. We deeply appreciate it and we are stronger for it. 

No comments: