What matters to me

When our son was about six years old, my husband and I were faced with a difficult healthcare decision. His rare genetic syndrome made it nearly impossible for our son to keep his attention on anything for longer than seconds at a time, and he moved from activity to activity without landing or learning. (I captured a snapshot of a that time in a blog post here.)

His neurologist recommended that he try medication for ADHD. His teacher was supportive, since she watched his struggle to maintain focus in school. But others weren’t so sure. His cardiologist was concerned about side effects that could affect his vulnerable heart. His gastro-enterologist, endocrinologist and his dietician pointed out that he was already struggling fiercely to grow with the help of a feeding tube and growth hormone shots. Did we really want to jeopardize his growth with a medication that would most likely decrease his appetite?

I remember asking friends, family and other parents of children with complex health care needs what they thought we should do. Everyone had an opinion based on what they would do if they were us. The problem was, they weren’t us; it wasn’t possible for them to put themselves in our shoes. Clinically, there was no one perfect choice, and the professionals couldn’t say for sure, either.

Ultimately the decision came down to us. We thought long and hard and boiled the issue down. What mattered more: physical growth or mental/social growth? What mattered more to him? To us as his parents? To our family? With this in mind, we made a choice. Who knows if it was the right one, though in hindsight it still feels right.

I’m grateful that we were allowed to become informed and to make a choice. But that wasn’t always the case. For many years, patients and families were not given choices, and simply told what to do according to clinical guidelines.

Little did I know that almost exactly the same time, across town at Massachusetts General Hospital (the very hospital in which my son was born!), researchers Susan Edgman-Levitan and Michael Barry were writing about an important shift in health care called shared decision making.

In their article Shared Decision Making — The Pinnacle of Patient-Centered Care, they described a process “by which the optimal decision may be reached for a patient at a fateful health crossroads … and involves, at minimum, a clinician and the patient, although other members of the health care team or friends and family members may be invited to participate. In shared decision making, both parties share information: the clinician offers options and describes their risks and benefits, and the patient expresses his or her preferences and values. Each participant is thus armed with a better understanding of the relevant factors and shares responsibility in the decision about how to proceed.”

Edgman-Levitan and Barry go on to say that to work this way, both patients and clinicians need to change:

“Patients should be educated about the essential role they play in decision making and be given effective tools to help them understand their options and the consequences of their decisions. They should also receive the emotional support they need to express their values and preferences and be able to ask questions without censure from their clinicians. Clinicians, in turn, need to relinquish their role as the single, paternalistic authority and train to become more effective coaches or partners — learning, in other words, how to ask, “What matters to you?” as well as “What is the matter?”

Asking “What matters to you?” as well as “What is the matter?” It doesn’t sound like a big change, but it is. The question of “What matters to you?” has become a rallying cry within healthcare among those who wish for healthcare to become more empowering and inclusive for patients, their families and their communities.

In fact, this week marks the fourth annual ‘What matters to you?’ day, celebrated at healthcare organizations around the world to encourage healthcare ask patients, the public and professionals what matters to them.

Here in Sweden, I’m organizing a digital conference. (Info in Swedish here.) I’m excited to show how the question is being asked and used to improve health and care. In the hustle and bustle of the program, there probably won’t be time to think about what it felt like all those years ago when we were stepping into empowerment and involvement, but it’s there in my heart.

So, what matters to me? Connection, respect, learning. A good cup of coffee and saying thank you. Remembering to take the time to smell the roses (and if I’m honest, sometimes picking one as I did this morning on the way to the office). And of course, being allowed to make choices for me and my family. How about you? What matters to you?

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Overcoming paralysis with a single step

In a recent stress dream, I sat in an airport coffee shop knowing I was supposed to board a plane, but with no recollection of when the it was going to take off or from which gate. Despite being surrounded by information counters and departure displays, I just sat and sat, paralyzed and ashamed, with no sense that there was anything I could do.

Of course, these stress dreams usually occur for a reason.  My son has been getting hurt lately due to an unusual symptom that makes him fall down at sudden noises, and I’ve known for a while that it’s time to do something about it if I want to keep him safe. But the anecdotes I’ve heard from other parents who have kids with this rare syndrome have given me the impression that there aren’t really any good solutions, and each one caused its own negative feeling. The options appeared to me to be as follows: have him start using a wheelchair (makes me sad to think of limiting his mobility on purpose), start on heavy-duty personality-deadening anti-psychotic medication (ugh!), finding a helmet or brace or full body bubble wrap (makes me worry that he will incur even more stares than normal), or collaborating with industry for new applications for existing technology for sound-blocking headphones (makes me feel exhausted just thinking about it), etc, etc. Or I could just doing what I’m doing now, holding my son’s hand whenever he is standing up, even in the house (which is making me feel strung out). So I have been doing nothing, just sitting at the airport waiting to miss the plane.

This morning my husband and I had a quick huddle: I would ask the parent community of my son’s syndrome for their advice, my husband would research headphones. Within minutes of posting my inquiry to the Facebook group (“Help! It’s time! Tell me what you did and help me figure out what to do!”) I had responses. Not perfect answers, but ideas. I realized that many of my fears were completely exaggerated. The drugs weren’t all bad. There was a special walker that could work. The wheelchair wasn’t the worst thing. And most of all, there was company and commiseration.

My recent dream hit all my nightmare buttons: being late, unprepared and disorganized, inconveniencing and disappointing others, appearing and actually being incompetent (two separate but equally humiliating fears). But what really scared me in the dream was observing myself be unable or unwilling to do anything about it, the acceptance of paralysis. Today reminded me that there are plenty of times I’m scared stiff, and that sometimes all I need to do is to take just one small step, especially when that step is asking for help and companionship. Because being afraid is bad, but being paralyzed by that fear is the real nightmare.

Do you have a scary aspect of your child’s care or development that’s got you frozen? What small action could you take that could help you get unstuck–even if it’s as simple as asking for company?