Kindness shouldn't be blue sky thinking

Kindness shouldn't be blue sky thinking

"I don't have any help today". The technician looked annoyed. I wasn't sure she was talking to us, initially. Frankly, it was an odd thing to say out of the blue after calling us into the room. I looked around, to see if she could have been talking to someone else.

I must have looked at her with the obvious question on my face of 'what are you talking about? It was then she kind of looked down at my slightly nervous, ill, skinny 15yo, like he was annoying her. Down at his arm, where we had put some topical anesthetic and a clear bandage where he preferred to get his blood drawn, and suddenly I understood.

Oh no. Not today. I'm not having that today. I put on my biggest, friendliest smile - looked right in her eyes and said "I'm sorry, I don't think you shared your name with us today." She was not coming at my son with that attitude and a needle without at least introducing herself to him (and to me). I guess #HelloMyNameIs hasn't made it's way to the lab at my local hospital yet. She was taken aback for a moment (my name? I need to tell them my name?) and then introduced herself. Only then did I tell her that my son, who although is ill, and nervous, is an old pro.

Our family, more than most, knows about #ItDoesntHaveToHurt. After a lifetime of painful procedures our son spent literally years of his life working with a therapist and on his own overcoming needle phobia. And despite the fact that his underlying rare disease makes it so that the topical anesthetic does little to help him, he is the king coper. He is a pro. This is not his first, nor will it be his last day at the rodeo.

I didn't tell her any of that. But I'll tell you what I did want to say. That when faced with a clearly nervous, unwell young man, she chose to meet him with hostility instead of kindness. I don't know what was going on in her mind. It was the end of her day. Was she nervous? Do her employers give her the tools to help those with needle anxiety? Does she feel safe in the job she does? I don't know the answers to any of these questions. But I have to say, in the moment, I didn't give a good hot damn. She is a front-facing healthcare provider working with people of all ages and abilities. If she can't meet them with kindness, she'd better demand the tools to do so, or find something else to do. Because she's not coming near him with that attitude again.

A lot of health care interactions could be improved by the simple acts of exchanging pleasantries, manners, treating patients as human beings. I truly don't understand why this doesn't happen more. So many of our (meaning our son's) healthcare interactions have happened and continue to happen in blood labs and medical day units. His perceptions of what healthcare is, whether it's comfortable, friendly, frightening, or even mundane have been framed by these experiences. It's all well and good to talk about partnership with your primary care provider and specialists, but we need to get it right here too. How young patients feel about these interactions may determine how readily they seek medical care later. As my good friend Sue Robins always tells me, kindness always matters. She's right.

A Personal Orchestra - beautiful music or discordant noise?

I stand in front of a virtual orchestra. My musicians are doctors, nurses, occupational therapists, paediatric dentists, physiotherapists, office assistants, booking clerks, and health technicians.  The orchestra has also included Speech and Language Pathologists, a variety of specialty teachers, classroom teachers, Infant Development specialists, and researchers. Each section of my orchestra has had turnover, with new members replacing old, new kinds of specialists coming in and leaving, but always an echo of their presence remains.

In the meantime, I am meant to conduct these musicians. Their instruments are their tests, their knowledge, their hands, their work. The scores they play from are their reports, the test result placed in front of them. Each of them are sitting there, on their own, quite often sublimely unaware that they are but a small part of a greater musical endeavour. I try to weave meaning and music from their parts into the greater whole that is my son’s life – taking what I can from each appointment, meeting, therapy, and class. I interpret what I learn in one area and adapt, explain as I move on to the next musician. Always hoping that I can communicate for them. Always hoping that as a conduit I’m doing enough.

Wonderfully, amazingly, some try to hear the music coming from their neighbours to make sense of it together. Others just keep playing as if they are soloists, a Diva come to the concert to play at centre stage.

And there I am, madly waving my arms, my virtual baton whirling, whirling, trying to pull the pieces together. Conducting them as if they are my orchestra, yet their music, the scores from which they read are often a mystery to me. I ask them to share with me and some do happily, willingly: Others begrudgingly and some, not at all.

And still my baton twirls, and whirls, because there isn’t anyone else to try to make this orchestra work. And my son deserves that we find a way to make some beautiful music out of this cacophony of sound. 

Pulling this orchestra together is my job. But it could be made so much easier if information sharing was facilitated through an accessible health record. A common musical score, if you will. If there was a shared recognition that a patient with complex medical needs lives a complicated life – and scheduling that life requires respect and empathy. For the sake of argument, the recognition that everyone is a part of a larger team (or orchestra) that involves those in and out of the health care environment. Finally, I know that no-one will ever advocate for our son as much as much as my husband and I do, but the expectation that we are the sole information conduit through the health care system is ridiculous. This should not be how we optimise health care for those most vulnerable and compromised.

We can make better music than this.

Patient Centred Care - Like a lot of things, I’m not sure what it is, but I sure know what it is when I see it.

I always like to tell a funny story…. For many years my son talked about one of his favourite doctors. He’s been his favourite health care provider because whenever we went there, the appointments were (in my son’s perspective), mercifully short. For a young boy who spent a decent amount of time at the clinic and the hospital, listening to adults ask questions and receive information, these appointments with no preamble, little information, and mostly self congratulation, were bliss.

However, from a patient centred care approach, I’m not sure I agreed. To be fair, technically, I had no fault with this doctor. His skills were, for good reason, legendary. My son was in excellent hands. But, when it came to those small touches that makes the family feel like they are, at that moment, the centre of the health care practitioner’s world? Well, not so much. The appointments, however, were definitely brief.

We recently had a new health care clinic added to our roster and our initial appointment was scheduled to last two hours – the 13 year old approached it with dread! His tolerance for medical appointments has gotten better with age but surely not that much?

This appointment was a completely different animal from anything we’d ever experienced. This was more than #HelloMyNameIs! This was #HelloWhoAreYouAndWhatDoYouNeed? From the get-go, the questions were about what were our goals for his care. And let me be clear – not just my goals, his mom, but his goals, the patient. The entire appointment was about our partnership as a team. How we could move together and facilitate a working relationship in order to effect better healthcare for my son. Wow. Let me say that again – Wow!

Living life with a rare disease, with an undiagnosed disease, has been a life of my project managing a healthcare system that I’ve been working on figuring out myself. I’ve sorted some stuff out. But I’ve missed a lot. Some opportunities have passed me by. I think I’ve done a reasonable job, but, (and this is a BIG but), I am only aware of the things I’ve missed because of other parents. What else have I missed? And how has they impacted my son’s life?

I can not tell you how relieved, unburdened I am to have this new clinic talk to me about a team approach.

Patient-centred care. I may not be able to explain it succinctly, but can I ever tell you when I see it!

ADDENDUM
A week after this appointment we went to another new specialist. Amazingly, another beautiful example of patient centred care. We see a lot of specialists, and for the most part I don't doubt their knowledge base, but we need so much more. We need partnership and lateral thinking.

After the second great experience in seven days here's what I've distilled as [some of] my needs for patient centred care.

1. Tell me who you are and describe you specialty.
2. Ask questions to listen and give me (and my child) time to speak.
3. Ask me what I need from our relationship & how we can build a plan together.
4. Tell me what you can give and what your limits are.
5. As a parent of a patient, don't just address me, address my child, your patient.
6. Tell me how we can communicate in the future.

I now realize that health care providers like this aren't the unicorns I thought they were. They need to be celebrated as the leaders they are.