Kelly Michelson | The Trust Project

Associate Professor of Pediatrics, Director of the Center for Bioethics and Medical Humanities
Feinberg School of Medicine / Pediatrics

Kelly Michelson is Associate Professor of pediatrics and Director of the Center for Bioethics and Medical Humanities at Northwestern University Feinberg School of Medicine. Her research interests include communication, decision making, palliative care, and ethics. Currently, her research focuses on communication and decision making among patients, family caregivers, and professional caregivers in the pediatric intensive care unit as well as in the palliative care setting. Her work uses qualitative and quantitative methods as well as patient/stakeholder engagement and community based participatory research methods.

Learn More

Videos by Kelly Michelson

Trust building begins by showing you care and are willing to comfort and support another.

Building Trust by Learning to Listen

Contributor / Kelly Michelson
Kelly Michelson Pediatrics Healthcare,Reciprocity,Regulation The pediatric intensive care unit can be a very complicated place with a lot of players — there’s doctors, nurses, social workers, chaplains; there’s a lot of people just in the PICU itself.

And then for a particular patient, there may be even more physicians — subspecialists, other providers, just a lot of people running around all the time and people changing over.

I think each component of this VALUE mnemonic is important: we want to value what the family is saying; we want to acknowledge whatever emotions the family is going through; we want to listen; we want to understand where the family is coming from; and we want to elicit questions from the family so that we know that they understand as well.

If I had to focus in on one or two things, I would highlight two. And the first is the L for listen.

When we’re having these conversations, one of the ways that we can help support families is to stop talking and hear what they have to say, even if it means silence, because sometimes it’s in the periods of silence that families realize what they can or feel like they need to say.

And then, the other piece of it that I think is really important and sometimes doesn’t get as much attention is the piece about getting to know the patient or the family or what their issues are — asking them sometimes personal questions about why they feel a certain way, why they’re making a particular choice, and even personal questions about what their situation is like, whether it’s unrelated to the actual decision or discussion that’s going on.

I think it’s really helpful to know that the patient likes to swing on the swing.

And that kind of conversation fosters a lot of trust and support from both sides. So, now the mother knows that I care about her child, or the father knows that we care about their child.

And the healthcare provider also has a personal investment in this particular patient because now I can see what this patient looks like swinging on the swing, and I have a whole different perspective after that kind of information.

BUMPER: Learning to Trust Your Patients

In pediatrics, it’s rarely the patient who decides — sometimes, but rarely — it’s often the parent.

In an ideal world, we’re all making decisions that are important for this patient; we’re not even making decisions necessarily about ourselves. So, when you feel like you don’t have trust for a parent who’s making a decision about a patient, it can be very challenging.

And I think that one of the things that can help mitigate some of those challenges and help smooth things over is to really focus on understanding why the parent is doing or saying what they’re doing, where their behavior comes from.

And I can give you an example. There’s a parent in the intensive care unit whose child has a cancer that’s metastasized and who will likely die — their child will likely die.

And this parent has very difficult interactions with the healthcare team and is often questioning things and doing things in a way that you can’t imagine how that’s helping their child.

But I think that if we understand what the perspective of that particular parent is and why he or she feels that way, and if we look back and we realize that maybe it took this particular parent two months to get their child into the hospital and they feel guilty about that and that they impacted the outcome and that a lot of those emotions influence how they behave, I think it can help unpack the situation.

Really trying to understand the perspective of the parent can be useful when there’s a sense of distrust about what the parent is doing and why.
Healthcare providers must recognize the importance of trust and communication in building stable relationships with patients.

Trusting Healthcare Providers and Institutions: Key Findings

Contributor / Kelly Michelson
Kelly Michelson Pediatrics Communication,Distrust,Healthcare,Measurement Research about trust in the healthcare setting has generally taken two approaches: the first is to look at it in a qualitative fashion, so to hear personal anecdotes and learn what we can from that; and the other is to look at it in a more quantitative fashion, using scales and measures to see how trust relates with specific outcomes or specific variables.

From the qualitative research, we know that things like developing partnerships, developing relationships, demonstrating competence are all very important components of establishing trust in the relationship.

Most of the quantitative data related to trust in a healthcare setting use trust scales to compare a measure of trust to a particular variable — looking at things like, do women tend to be more trusting than men of their healthcare provider? Are there racial differences related to trust? Are there differences in providers’ and healthcare settings’ relationship to trust?

And these concepts help us to think about how we act — in a clinical setting, for example — and what we teach trainees about how to build trusting relationships with their patients or with others in the healthcare team.

BUMPER: Trust and Communication

Much of what we know about trust in the pediatric intensive care unit comes from literature that looks at communication and how communication unfolds in this particular setting.

We know from some qualitative work, from Carnevale et al., that trust is a really important part of communication in the pediatric intensive care unit.

These authors interviewed physicians, nurses, and parents about communication, identified three different components of communication. And of note, one of them was relational communication. And one key factor in developing relational communication that they identified was fostering trust.

And in another work by Ames et al., we find that trust is not only an important component for healthcare providers to focus on but also for parents.

In this work, the authors interviewed parents of children who were in the pediatric intensive care unit and asked them about their roles. And one of the three roles that they identify was actually that the parents should be trying to establish a trusting relationship with the healthcare providers in the PICU.

In another study done by Vivian et al., we learned about the importance of communication among staff members in the pediatric intensive care unit.

In that study, staff members were interviewed, and we found that poor communication among caregivers within in the intensive care unit can impact trust and therefore impact how they care for patients.

So, again, we’re seeing the importance of trust between providers and patients (or, in my case, parents) but also among providers.

BUMPER: Trust in Critical Decision-Making

In terms of decision-making in the intensive care unit, much of the literature has focused on issues related to pretty challenging decisions for children who are very sick, things like withdrawing or withholding life-sustaining efforts if a child was seriously ill — some pretty serious decisions.

Some of the research I’ve done, for example, has looked at what kind of influencers contribute to a parent’s deciding whether or not to withhold or withdraw life-sustaining therapies if their child was so sick that that became something to consider.

And what I found was that distrust was one of nine important factors that parents are weighing in terms of making that kind of decision.

In another study, Meert et al. interviewed parents of children who had died in the pediatric intensive care unit to find out more about their experiences. And they found that parents who felt that clinicians were withholding information also had a sense of betrayal or distrust towards those physicians.

BUMPER: Enhancing Trust in the Intensive Care Unit

But it’s really important not just to know what happens in the intensive care unit and where trust fits into communication and decision-making; now that we have all that information, we really want to try to impact trust and to enhance better trust and better communication and hence better decision-making in the intensive care unit.

For example, Curtis et al. looked at an intervention where he tried to change multiple components of what was going on in the intensive care unit, including identifying champions for this work, providing feedback to clinicians.

Interestingly, he didn’t find that that intervention changed his primary outcome.

In another effort done by Lautrette et al., they actually educated clinicians about how to conduct a family conference.

And they came up with this mnemonic called VALUE, and each of the letters stand for something different — specifically that you should value and appreciate what the family is saying during a meeting, acknowledge their feelings and emotions, that you should listen to what they say, that you should try to understand their situation and their values, and that you should elicit questions from them.

So, they actually taught clinicians a little bit about how to focus their communication during family conferences in the intensive care unit. And they actually did find a difference.

They found that for families who had family conferences with clinicians who were trained in this manner, those surrogates to the patients in adult ICUs had less anxiety and depression after their loved one had died and less symptoms of post-traumatic stress.
Trust in healthcare is especially critical when a child's health and well-being is at stake.

Trust and Vulnerability: A Pediatrician's Perspective

Contributor / Kelly Michelson
Kelly Michelson Pediatrics Definitions,Distrust,Government,Healthcare,Institutions and Context,Regulation,Reputation Management,Vulnerability Trust is really about relationships. And it can be relationships between people; it can be relationships between a person and an organization; or it can even be between people and events.

People actually have different definitions for trust, and I think it’s important to think about, what do we mean by trust? Some would call it an “action based on expectations of how others will behave in relation to yourself in the future.”

Another definition of trust that applies well in the healthcare setting is the following: “the optimistic acceptance of a vulnerable situation in which the trustor believes the trustee will care [in the] trustor’s interest.”

There are some parts of that definition worth emphasizing — in particular, this notion of “vulnerability,” that there has to be some sense of vulnerability in a trusting relationship, whether it starts from that place or develops into a vulnerable place.

So, you can imagine having a relationship with someone, and once you’re very trusting of that person, that actually can make you more vulnerable.

More commonly in the healthcare setting, though, we see a patient who because of their illness, has some inherent vulnerability, and that helps to set up a situation where trust can build.

Another important piece of this definition is this concept of motivation — the idea that, in a trusting relationship, one person is doing something caring for another person or something in another person’s best interest.

And finally, embedded within this definition is the notion that trust is a forward-looking concept. While it may be influenced by past events, it really describes how a person or organization behaves moving forward.

BUMPER: Trust and Distrust

In talking about what trust means, we also have to consider what’s meant by “distrust.” And while the jury’s kind of out about a clear definition, I think there’s some important things to talk about.

Some people would talk about distrust as the absence of trust, the lack of familiarity, sort of not having a feeling one way or another.

Another way to look at distrust is that it’s the opposite of trust, that it’s a situation where a person is pessimistic or concerned about another person’s motivations.

And finally, one can think about distrust as a substitute for trust, not necessarily the opposite of trust. So, at some level, you can have distrust and trust at the same time.

For example, maybe I get sent to an emergency room, and I feel confident about the situation because I know it’s a good emergency room. But something happens, and I sort of feel like, “Well, I’m going to hold out and reserve judgment.”

So, you can kind of share a sense of trust and distrust simultaneously — this notion about trusting, but “let me make sure that’s really the case.”

BUMPER: Trust in Individuals and Systems

When we talk about trust in health care, I think it’s important to consider it in relationship to different groups: you can have individuals, and you can have systems.

Even in this individual group, you can identify differences. So, you can have a particular one individual — a doctor or a nurse. Or you can have kind of an institution that’s an individual institution within a larger group — so, maybe one hospital within a whole healthcare system.

And then you can also look at it from a more systems perspective. And even in that context, there are more individuals and then more institutional things.

For example, maybe the group or system of how emergency doctors function or how surgeons tend to function is maybe a more systems approach — or you have how a particular institution (how hospitals work) can also be a more systems-based perspective.

The other thing to keep in mind is that relationships can be personal and they can be impersonal in the healthcare system. So, again, I use the individual doctor with their patient as a very personal relationship.

And even a patient may have a personal relationship with a hospital. You can imagine having a feeling of trust for a particular hospital and, in that way, kind of personalizing that relationship.

You may have someone who doesn’t believe in western medicine. So, even this concept of western versus non-western — this system of western medicine versus non-western medicine — is important for some patients.