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Physician, Heal Thyself: on being a patient-health-care-professional hybrid

August 5, 2013

Many people have told me that my diabetes will make me a better therapist. I have no doubt.

My double-identity as a health care professional and patient is, apparently, really valuable. (There’s even a term for people like me: “hybrid.” I like this term. Makes me feel trendy and innovative, like a Prius.) Hybrid perspectives are in high demand. A recent conversation with a fellow TID and psychologist got me interested in the need for people like me – people who can provide counselling to patients and training to professionals about what patients need: compassion, respect, dignity, to name a few things. (Every person is different. Not everyone’s needs are the same.)

Then last week, another conversation reiterated that these hybrid perspectives are much needed.  It was over a conversation on my parents’ deck in Montreal, with an old family friend – a paediatric nurse – about patient-centered care.  She is involved in the McGill Faculty of Medicine”s wonderful “Whole Person Care” program and is very passionate about training medical professionals in these reflective practice tools. She was interested in how my perspective as a patient can help better inform health care practitioners in delivering better-quality care. The conversation was both personally gratifying for me (“someone’s hearing me!”), and professionally very exciting (“I need to publish on this!!”).

Having just finished my master’s in music therapy, and having just begun working in the field, I have had plenty of opportunities to reflect on theories of patient-centered practice and how they relate to my diabetic-self. My diagnosis was only a year before I started my master’s, and I’ve been processing a lot of the ongoing grief in tandem with this degree. It was, in fact, an experience my first night in the hospital, when I was diagnosed, that confirmed my then-loose ideas of having a music therapy career. It was an experience that left me with the very clear thought: holy cow, hospitals need more music, so that people can safely fall apart from grief.

I have brought a lot of patient-perspective to my master’s degree. I even wrote my thesis on how music therapy contributes to a growing culture of holistic practices in medicine, and how equally challenging it can be to fully embrace that holism within a traditional medical institution. I cannot separate my work with clients in hospitals and health care settings from my own processes as a patient – processes of grieving and healing, fighting and denying,  repressing and investigating, celebrating and forgiving.

And yet, I find myself falling into uncomfortable habits as a health care professional. Currently I am working three days a week in Long Term Care facilities. Most of my clients have dementia, are non-ambulatory, or (in most cases) both. Being surrounded all day by people who are elderly, disoriented, and dependent on others for feeding, dressing, and toileting, affects a person. These are some of our cultures most vulnerable and neglected peoples. I wish it wasn’t so easy to fall into habits of finding residents “cute,” or “endearing” in their dementia-related helplessness. It can be the hardest thing in life, and certainly in health care, to remember that we are all people.

And boy have I felt it on the other end, as a patient – although my catalogue of Totally Inappropriate Things Health Care Professionals Have Said To Me is meagre compared to my fellow diabetics who’ve been at it a lot longer. I became a patient at an age where I knew my rights and wasn’t afraid to insist on them. But I’ve had a few completely non-patient-centered experiences:

There was that drop-in clinic GP who filled out my driver’s license health form, and asked me “have I ever experienced hypoglycemia?” (Which is like asking me if I’ve ever sneezed.) She was so shocked that I had experienced occasional lower-than-optimal freak BGs in my life that she almost cost me my driver’s license.

There’s my current pharmacist who has repeatedly used totally inappropriate language with me when I come in to refill my test strip order a few days “early” (ie. before the insurance company deems it appropriate for me to require more strips). He’s said things like, “you’re using too much,” or “it’s too soon,” or “I just gave you some.” English is not his first language, but there’s an attitude there that suggests protecting himself from insurance-company audits is more important than understanding and responding to the health needs of his clients. I’d get the hell out of there if the pharmacy wasn’t conveniently located a block from home. And boy has he heard a piece of my mind.

One of my faves: a physician at my school’s drop-in clinic instructed a nurse to call me to inform me (verbatim), over the phone, that I have “uncontrolled diabetes, and should make an appointment with my endocrinologist immediately.” (All this based on an A1C of 7.6.) To which I replied, “no, he’s wrong. I don’t have uncontrolled diabetes. I have diabetes, which means that sometimes my blood sugar is high” and then made an appointment to speak to the physician in person to explain how completely disrespectful and misinformed that choice of language was.

Being a patient in a modern medical system can be dehumanizing. I believe that modern medicine, by its very nature, is systematically dehumanizing, to an extent. As a reductionist practice that focuses on illness, there are not yet structures in place to focus on wellness. In treating disease areas and isolating pathologies, we lose out on the idea of our wholeness and shared humanness. That’s a big reason why there’s such a push in medicine towards holistic practices, and why I’m so excited to be in the career that I am now.

I’m learning how to feel whole in spite of, and also because of, my body’s inadequacies. It is also easy to fall into sadness, fear, and stigma around illness. Contributing to the dialogue between HCPs and patients excites me. It’s really cool to hear that being a “hybrid” is valuable – and not just because it means my perspectives are in demand. Because the lives of patients are increasingly being seen as important as the threats to  them.

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4 Comments leave one →
  1. michelle s. permalink
    August 5, 2013 9:57 pm

    Amazing post Sarah! Can’t wait to collaborate more with you!

  2. Sondra Sherman permalink
    August 6, 2013 9:52 am

    Hi Sarah, so nice to get your blog, Can I share with others. You are a true role model and inspiration to others. regards, Sondra

    • August 6, 2013 8:05 pm

      Sondra, so good to hear from you and YES, you are always welcome to share this! And I want to make a special note of how much GOOD QUALITY CARE I have received from you and the team at the JGH, as well as my current clinic at TGH. I spelled out a few bad experiences with health care providers, but did not give credit where it’s due to those who have gone WAY BEYOND their call of duty to support their patients in all areas of life. Thanks, Sondra. 🙂

  3. August 27, 2013 4:59 pm

    So many important points in this reflection. Hybrids aren’t unique to T1 but I have found a lot of them in practice. And does it ever affect communication! Can you ask your friend at the Whole Person Care program why there’s no patients included in the upcoming conference? I just find that somewhat ironic. Lastly, if you’re in T.O. Sept 16 come to the Arts Health Network meeting and get introduced to a community of people applying the arts in health. You can email me for full details. Here’s a bit of spontaneous music therapy http://youtu.be/tzwWskM4hN8 Great reading your blog, Zal

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