Dr. Bernstein died April 15th at the age of 90. He got type 1 when he was 12, yes, that’s 78 years living with type 1. He’s a special person in my life. Maybe two decades ago I was asked to tape a segment for dLife, a diabetes TV show that ran from 2005 to 2013, at his office in Mamaroneck, NY. The segment was on gastroparesis. To my amazement I discovered I had it, well, he told me, “Almost everyone with type 1 has some amount of gastroparesis.” He thought mine was about 15%.
He’s also a special person to me because reading his book, The Diabetes Solution, caused me to vacuum refined carbs out of my diet. It changed my life with diabetes. It dropped my weight, and my insulin requirement halved. A low carb diet, which I’ve since never wavered from, also makes my blood sugar much easier to manage.
He was also a special person to me because he helped get glucose meters into the hands of people with diabetes. His wife, a nurse, used one in the hospital before any of the larger population had access. With this awareness, he got one for himself and subsequently for all of us. And he’s done so much to help people with type 1 understand their own condition.
I’m late to this apparently new day we have now every year, March 27th, called World Adherence Day. And I’m fuming. Started by the World Heart Foundation and supported by the International Diabetes Federation, I find it malicious that healthcare executives from these organizations support adherence – push over pull, hierarchy over collaboration, and medical language over lay language. This poster’s headline announces not just an oxymoron, but these two organizations’ ignorance.
How can ‘adherence’ be a partnership? When I looked up the definition of adherence this is what I got – “In healthcare, “adherence” refers to a patient’s willingness and ability to follow a prescribed treatment plan, including taking medications, attending appointments, and making lifestyle changes as recommended by their healthcare provider.” How can ‘following’ and ‘as recommended by’ be a partnership?
Adherence, for a “patient”, means following a treatment plan created by a clinician. It is absent of partnership, collaboration, choice, context, the complexity of what life throws at us, the complexity of our condition, and our own human foibles managing everyday life and our condition.
Similarly the IDF’s campaign states, “The campaign aims to highlight the importance of following prescribed healthcare plans to manage chronic conditions like diabetes and cardiovascular diseases.” Yes, the bold and underlining is my doing.
Not only is ignorance highlighted in this campaign, but arrogance. Long has the diabetes #languagematters movement shared the words, concepts and behavior offensive and detrimental to people with diabetes’ management. “The Use of Language in Diabetes Care and Education” published in Diabetes Care in December 2017 is explanatory and comprehensive. Have we learned nothing? Yes, we have learned nothing. Below an excerpt from the article:
When will we learn that machine, left-brain hemispheric thinking that values – push, grab, overpower, precision, perfection, narrow focus, heart-less – does not inspire people, emotive beings, to do their best? When will we understand that with all our medicine, treatment plans and glorious devices at our fingertips – hardware and software – it is “heartware,” – connection, compassion, support and safety – always that inspires people to do their best?
Today’s state of industrialized healthcare cannot help but follow its own heavily laden, structured and systemic paradigms and procedures. Such structures are part of the reason the world is in the state it is in today: a narrow focus on getting, grabbing, dehumanizing, power, dominance over.
But things will not change until people reclaim what it means to be human. In healthcare, until health professionals work with their patients with respect, dignity, collaboration and understanding that words like ‘adherence’ imply mechanistic cause and effect, and that anything less than desired is the patient’s fault. And the world will change only when we all treat each other similarly and understand the same.
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