Mom investigates parents' role in shared medical decisions
Photo of Francine Buchanan and son Cristiano
By Louise Kinross
A new study in the Journal of Participatory Medicine describes the activities parents of children with complex medical problems engage in when working with clinicians to come to treatment decisions. Lead author Francine Buchanan says it grew out of her own experience raising her son Cristiano, now nine, who was born premature and spent a year-and-a-half in hospital. "In the technical definition of shared decision-making, the parents bring with them values and doctors bring with them clinical expertise," says Francine, who is Research Patient and Family Engagement Coordinator at SickKids Hospital. "That definition is too narrow. Parents also bring evidence. They're the quarterback, talking to all the clinicians who are helping their child and chatting with other families in similar situations and bringing their personal experience." The study was part of Francine's PhD in shared decision-making at the Institute of Health Policy, Management and Evaluation at the University of Toronto. We spoke about the findings.
BLOOM: What kind of medical complexity did your son Cristiano have?
Francine Buchanan: When he was discharged after having 10 surgeries he had a mechanical ventilator, a tracheotomy and a feeding tube.
BLOOM: Why was there a need for this study?
Francine Buchanan: It was born out of my personal experience and trying to understand what shared decision-making was as a parent trying to share decisions with doctors. I started my graduate program two months after my son was discharged from hospital and brought him to class. When I did background research on what shared decision-making was and how it was defined and measured there seemed to be a gap for me in understanding the activities or actions involved. No one talked about bringing an idea from the doctor's or parent's side, or how those things you brought with you were used back and forth in sharing a decision. I wanted to understand the actual cognitive processes of both doctors and parents.
BLOOM: What's a simple way of describing shared decision-making?
Francine Buchanan: In the technical definition of shared decision-making, the parents bring with them values and doctors bring with them clinical expertise. Decisions combine the clinical medical knowledge and align it with the parents' values. The challenge with that, from my perspective, was there's a lot more, both on the parents' side and doctor's side, that comes to a clinical decision. Parents also bring evidence. They're the quarterback, talking to all the clinicians who are helping their child and chatting with other families in similar situations and bringing their personal experience. That's much more than just bringing values.
BLOOM: You note that there's a low rate of shared decision-making with families of children with complex medical problems vs other pediatric populations. Why is that?
Francine Buchanan: Researchers such as Dr. Jody Lin have done studies showing lower rates for children with medical complexity vs. other children who might have acute medical needs. One of the reasons is that a complex child's needs may become acute fast, and when speed increases, the desire to engage in shared decision-making is hindered. The other challenge for doctors is knowing when it's appropriate to share information and with whom, because with complex kids there's so much information, usually multiple doctors and so much is going on. So there's the sense that it's too complex for parents. But timeliness is an issue too.
BLOOM: What was the purpose of your study?
Francine Buchanan: The purpose was to deconstruct shared decision-making into activities that we could look at. The ultimate goal is to create a model of shared decision-making for children with medical complexity. But we had to take a bunch of steps backwards because the existing definition was so narrow. I wanted to define the activities on both sides. For parents, where do you look? Who do you talk to? What do you do with the information? How do you double check? None of that has been identified in the literature.
BLOOM: You interviewed 11 parents and one adult who has medical complexity who was interviewed with their parent. What did you talk to them about?
Francine Buchanan: I asked them first to tell a story about a time they had to make a difficult decision. Then I didn't interrupt them, and I took notes on the story. Then we went back to particular areas within the story and I'd probe them: What did you hear? What did you see? What were you thinking about at the time? Why did you make the decision to do the next thing? I probed deeply into those areas to get them to reflect on what they were using, thinking and applying in order to make decisions. It's a technique used for interviewing airline pilots, nurses, firefighters and the military.
BLOOM: What is activity theory, which you used to analyze the data?
Francine Buchanan: A simple definition is that it looks at an activity as a fluid connection between the past, present and future. It also looks at the activity as a combination of the use of tools, the use of other people, the use of existing rules that people might not even be aware of, but abide by, and combining that towards a future goal. How do all of these things work together?
BLOOM: What were your main findings?
Francine Buchanan: The activity of making decisions is comprised of multiple sub-activities as a parent. You take care of your child, you respond to their needs, you do everything involved in caregiving. You're also a coordinator, figuring out what's going on medically and trying to get in touch with doctors. All of these sub-activities become input into the decision-making. They're concrete actions that have informed your decision. The quick summary is that parents bring much more than preferences and values to decisions.
BLOOM: You identify three main activities.* Can you give us an example of actions in each one?
Francine Buchanan: For *caregiving. Let's say your child has feeding difficulties. The parent is the one engaged in feeding on a daily basis. They might be able to bring with them the reaction a child has to eating a certain type of food, or the challenge that the child spits up when something hard touches their teeth, so they're not ready to chew. Those are observations that can inform a future decision on how to feed a child. They're not a preference. The doctor doesn't have access to that information.
In *problem-solving, let's say with the same child you will trial multiple soft foods on your child to find out which is easiest for them. One of the parents said 'I hate experimenting on my child but I have no choice.' There aren't opportunities in the clinical environment to do that type of experimentation. In the role of the parent, you do that to find the best things for your child.
Then you're also reading research journal articles and going on Facebook to see what other families do. One parent said 'I know to call this secretary because this secretary will get me an appointment with the doctor.' She was experimenting with navigating the system. Another parent said 'I always book with the same person to measure my son's eyesight because I want it to be consistent.' These are things parents have learned about navigating the system that don't come from a journal. It might come from peers. 'I know if I go here and talk to this person, they'll know.'
*Seeking activities could include navigating to access the type of care you think your child needs, but there are a lot of barriers. You need to call the secretary and book an appointment with the doctor because you can't just schedule an MRI without a referral. Or a doctor may recommend a certain therapist, but what if that doesn't work for my child? I might have to keep on trying different therapies to see what works. Maybe I find something that works, but it costs a lot of money. How will I find the money? These are all factors that impact the decision I make for my child.
BLOOM: I noticed some parents said that their doctor wasn't always the best source of treatment options. Sometimes they weren't told about alternatives, or their doctor didn't seem to be aware of them. Where did parents find other sources?
Francine Buchanan: Peers! Another parent might say 'I tried this for my child.' Another parent said 'I attended this conference and heard about a new therapy.' It's all about being engaged in the system.
I did identify that unless an idea was consciously brought up by a parent, it wasn't a matter of discussion. They had to bring the idea to the conversation. Those options weren't always welcome, and the parents didn't always feel comfortable about sharing them. They felt they weren't validated: 'What if I bring this and they say I'm dumb for thinking this could work?' Part of sharing decisions is being comfortable sharing information. Parents need to feel more comfortable bringing these topics up for discussion with their doctors and not being dismissed for using Google to search up articles.
BLOOM: There was a great quote in your study from a parent who said she had the lived experience but her husband was also a doctor and she had studied all of the academic research. Are parents better educated sometimes than clinicians imagine?
Francine Buchanan: I think that might be possible in some circumstances, but only because parents have one patient, they don't have 500. A parent knows their child and their child's illnesses the most and has the time to invest in it. I think to counter that a little we need to recognize that parents are seeking validation. They've read the research and they understand their child's situation but they want the doctor's opinion on that research and they want that validation. Parents don't want to make the decisions alone and they don't want the doctor to make the decision. They want the doctors to validate their world view of their child's illness and potential solutions.
BLOOM: I know that values weren't an activity you looked at, and that was already included in the original shared decision-making definition. But I often found with my son, personally, that I wanted a clinician to ask me my values, or to help me explore my values. It seemed like that should be part of their role and I was always surprised when it wasn't.
Francine Buchanan: Because activity theory talks about an activity being past, present and future, your values are part of the past that have made you who you are. I have a story when my son was in hospital. When he was around eight months old I was often asked: 'Are you going to sign a do-not-resuscitate order?' He was that complex and he was coding once a week. They wanted us to sign one. I was sick and tired of hearing that question over and over, and my answer was always 'No, we're going to do everything we can.'
Finally I wrote a letter about how my values were constructed to come to that decision, and I got them to put it in his chart. And the reason, which no one knew, was I had a pregnancy five years earlier that ended in spontaneous birth at 21 weeks. The ambulance got us to the hospital but there was nothing anyone could do to help my child at that point, so now, when I had this child, I'm going to fight, because I already know what loss is like. I don't need you preparing me for this stuff about 'if he dies,' because I'm experienced with that, and that's how I came to my decision. After reading my letter people said 'I get where you're coming from.' All it took was for me to put it down on paper and make it explicit.
BLOOM: But if you hadn't done that, no one would have understood your personal context. A parent might not even fully understand their own values, and they need help to explore them.
Francine Buchanan: The next paper I'm writing is a model that takes everything I've learned from writing my first two papers on this topic and makes it explicit for parents and clinicians: Think about your values and how you came to them and make them explicit. What have you tried with your child? Make it explicit. All of these things need to be shared with doctors and be part of the conversation. Both sides need to be open to listening and learning from each other. It is much easier to be non-judgmental if you hear how those beliefs and values were created.
BLOOM: Because often, our values change over time. What we think when we know nothing about disability changes after we've raised a disabled child for years.
Francine Buchanan: You need to bring the understanding of how you constructed your values. As parents of children with disabilities, our thinking around ableism and disability evolves as we become experienced and we experience how our child is treated.
I like the activity theory framework because it brings in your past, present and future goals, but everything in your environment informs it. Who are you talking to? Your friends or your peers? What do they give you access to? What if you don't have access to a journal because you don't read English? That's a gap.
BLOOM: How do you hope your paper empowers parents?
Francine Buchanan: I hope it gives them the confidence that everything they're doing on a daily basis matters and should be shared with their team. Their daily acts of caregiving and problem-solving are valued and matter. I hope it empowers them to have conversations about these things with clinicians and to be open and talk about them. Get your clinicians' impressions, but be confident that you're doing the right thing by engaging with your child. Caregiving is part of health care and you're a valuable member of that team.
BLOOM: What do you hope doctors take away?
Francine Buchanan: I want them to understand that parents are making a mental model of their child's illness and every once in a while, you have to look and examine that mental model. Ask parents to explain it and ask questions so the model can be supported by clinicians on the team.