Dr. Blair Bigham:
I'm Blair Bigham.
Dr. Mojola Omole:
I'm Mojola Omole, and this is the CMAJ podcast. Blair, lovely to hear and see you again.
Dr. Blair Bigham:
Thank you. It's good to be back. I was away for a month and very grateful for our lovely editor, Catherine, for stepping in and hosting the last episode.
Dr. Mojola Omole:
So Blair, we are focusing on articles that are looking at trust and the healthcare system as part of the humanities, and it's a new article type that's now in the CMAJ.
Dr. Blair Bigham:
Yeah. I think a lot of physicians have been having the conversation over the past, maybe four or five years, that establishing trust maybe is more difficult than it used to be. And so CMAJ has introduced this new article type to help discuss how we can establish or reestablish trust, particularly in low trust environments.
Dr. Mojola Omole:
And one article, we're going to be first speaking to him is by Louis Lochhead, which talks about a patient perspective after his wife was involved, both of them actually were involved in a serious accident, leaving his wife in a coma for almost two months.
Dr. Blair Bigham:
Yeah, quite a tragic story. His article, “Trust after severe injury: a caregiver's perspective”, discusses how trust between him and the doctors taking care of his wife was challenged and at some points, maybe even non-existent.
Then we're going to speak to an intensive care specialist who will give us some insights on how we can maybe do better at developing trust, especially when diagnosis or prognosis might be uncertain.
For me, Jola, this one obviously hits really close to home. I work in an ICU and we often have situations where there's, I guess, this disintegration of the bond between physicians and their families or the healthcare team in general, and it can make things super, super challenging.
You know how much sleep I've lost over some of these cases. I wrote an entire book about how we deal with the uncertainty of prognosis when people are possibly at the end of life or possibly just needing a lot more time of support on machines.
And Louis's story about his wife, Lorraine, really resonated with me; some of the challenges that we have and I think it'll be very eye opening to speak to him and to hear from Dr. François Lamontagne about how we can better engage families and really look inwards to establish a trusting relationship.
Louis Lochhead shared his harrowing journey as a caregiver in CMAJ. The piece is entitled Trust after severe injury: a caregiver's perspective. Louis, thank you so much for joining us today.
Louis Lochhead:
My pleasure.
Dr. Blair Bigham:
You and your wife, Lorraine, were seriously injured in a car crash. Can you tell us what happened?
Louis Lochhead:
Yes. It was on a beautiful Sunday. We went skiing with a couple of friends and their two kids and our two kids, and coming back at a certain curve, there was black ice, and we just went face-to-face with a four-by-four vehicle, which was coming on the other side. And it was a big accident.
The car was a total loss, my wife was unconscious, and then the services, the police and the firemen arrived and I woke up... My son, age eight, was trying to open the door for me and I just realized that I had lost consciousness and I turned around to look at my wife and she was totally unconscious and she seemed to be in a bad shape.
So then the ambulance arrived and my wife and I were taken to psychiatric hospital, and there I was in a room just in front of my wife and she was plugged to different equipment, medical equipment, all sorts of respirator and so on.
And I could see her through the glasses between the two rooms. And I couldn't move because I had to stay in bed. And I was there for about six days. Then I left and came back every day to be with her just to make sure that I'd be there when she wakes up because she was still in a coma.
Dr. Blair Bigham:
Tell me about the first time you visited her in the ICU.
Louis Lochhead:
The first time I visited her, I was very impressed with all the equipment there was. She was on a respirator and I tried to have information about her state and I was told she was still in a coma and maintain this way to make sure that she would recover better.
So I had to be patient and eventually the doctor came to visit her and he stood in the doorway. So when I saw him, I was happy to see him. I said, "Okay, this is a good time to get some information."
And I came to see him and said, "Hello, doctor."
And right away he looked at me over his glasses and said, "And you are?"
And I said, "Well, I'm the lady's partner."
So responded, "Oh, it's the first time I see you."
So that was the first encounter with the neurosurgeon and I tried to get more information. I asked him a question about which region of the brain was affected and what would be the effects and so on.
And he told me, well, there are axonal lesions and the corpus callosum was affected and so on. And I tried to make sense out of it, so I asked for more information, but it was quite scientific and complicated.
So I just took note of that and that night while I went on the internet to find out more about the problem that he mentioned, and of course, I got more worried than anything else.
Dr. Blair Bigham:
Sure. Tell me about how that first interaction with the neurosurgeon left you feeling. How did it impact your trust in him?
Louis Lochhead:
It really... First of all, I was surprised to see a reaction like that, and secondly, I realized that he was not that interested in talking to me. I was the caregiver, I was the spouse, but it seems like there was no interest for him to give more explanation.
Maybe he felt that I wouldn't understand or it was too complicated, or maybe also he didn't know for sure what region were affected and what would be the implication.
So I would have much preferred that he told me that, "Well, sir, we don't know for sure. It's very complicated. The brain is very complex," and so on. And I would've understood, but instead of that, I just got some answers, very technical, scientific, and I couldn't do anything with that. So I was very disappointed.
Dr. Blair Bigham:
Sometime later the neurosurgeon arranged another meeting with you. Tell us about the lead up to that meeting.
Louis Lochhead:
Oh, it was very difficult because I expected to receive information, but it was very difficult because the information was pretty bad. It was pretty serious. We were told basically, "Forget that Lorraine, you knew. If she wakes up and if she is freed from the respirator, she will most probably be in vegetative state. And even if she does not wake up, she might have a different infection because of the respirator or the urinal sound that they use."
So he sort of indicated, "Well, family will tell us to say, to cure the patient once or twice," but eventually they just let go. So it sort of indicated that we had a choice maybe to make at some point in time, maybe to unplug or something, and it was very difficult to receive that message.
Dr. Blair Bigham:
Was there any hope in the message or was it all pretty devastating?
Louis Lochhead:
It was pretty devastating. I think that it was very clear that we shouldn't have too much hope. And my brother-in-law and his daughter sort of asks a few questions and just dropped it at one point. So when I realized, I just ended the meeting thanking the doctor for his time and just decided that we would just continue.
And something very important to mention is that at one point, at the end of the day, I was alone with Lorraine, and she all of a sudden she opened one eye, looked at me, smiled and touched my face with her left hand.
And it didn't last long, but it happened. But there was no witness whatsoever. There was no one at the nurse desk, no one around. So I was the only one who saw that. And when I mentioned it to the family and friends, they looked very happy and smiled and everything, but I don't believe many trusted me or many believed me.
They probably thought it's hallucination of some sort. And I realized that it's okay. I might be the only one who believes that, but it's okay. It's my truth, and I know what I saw and I knew it happened, so I had confidence that something good would happen eventually. I thought this was a sign for me to realize that she would be coming back at some time in the future.
Dr. Blair Bigham:
How did all of this impact your trust in the healthcare team?
Louis Lochhead:
There were some other evidence that made me believe that I couldn't trust the hospital or the personnel because, for instance, Lorraine at one point, when I came in the morning in the room, I saw that she was not on the respirator anymore, but nobody had told me. Even if they tried over and over again to take her off the respirator, no one had told me that they succeeded, that finally she could do without the respirator.
And even when she woke up two months after the first day in the hospital, nobody took the time to call me and let me know that she woke up in the afternoon. It's only because I came in her room at night, and that I realized that, whoop, finally she opened her eyes and was awake. And when the nurse came back into the room, she said, "Of course. She's been awake since this afternoon." So to me this doesn't make any sense.
Dr. Blair Bigham:
You had these two moments where it was quite sort of a positive improvement. One, where she was off the ventilator and one where she was awake. You were surprised by those moments. How could the hospital have handled those differently?
Louis Lochhead:
Oh, just by calling me, just giving me a phone call.
Dr. Blair Bigham:
Quick phone call, yeah.
Louis Lochhead:
Quick phone call. "Hey, by the way, she's off the respirator." That's good news. And obviously, after two months of coma, they should have called right away. "Hey, we have splendid news. She just woke up, please come." And that would have been great, but those were two occasions in particular where I would have believed that the staff could have done something.
Dr. Blair Bigham:
Could you describe that moment a little more for us when you walked in the room and Lorraine was awake and recognized you?
Louis Lochhead:
Yeah. Well, technically, I was not alone because my sister-in-Law, which was very close to my wife, came with me to visit Lorraine. I just had my coffee in my hand and he put it near the window, and it's my sister-in-law that shouted, "Hey, she's awake!"
So right away we said, "Wow, incredible." And she looked at us and recognized us and was smiling and it seems fantastic after all that time. She didn't look like a person coming back from a coma and totally lost because obviously she would have woken up in the afternoon. So she had a few hours to recover and oh my God, that was the best news ever.
Dr. Blair Bigham:
How did the hospital explain that the difference between her recovery and that initial very horrible prognosis that they gave you in the meeting?
Louis Lochhead:
They never did. They never did. And as a matter of fact, my interpretation is that the neurosurgeon had a tough time with that because his prognostic was so far away from what was happening. How could he explain that? I guess,he could not.
Dr. Blair Bigham:
It struck me in your piece when you mentioned how the hospital and the doctor speaking to your family instead of to you had further eroded your trust in the team.
And I felt a little guilty because as an ICU doctor, I often speak to many family members to keep people in the loop. Tell me how the trust between you and the team got even worse with the approach of speaking to other family members without your knowledge.
Louis Lochhead:
Well, it obviously affected trust because they were made aware of things I was not even aware of. And I was the spouse, I was the husband. I deserved to know, and I was in the best position to make the important decision if there were any decisions to be made.
But it's like they lacked some courage to speak to me directly, and they went through the rest of the family. And eventually, it's only after Lorraine woke up from coma that I was made aware that day they had been spoken to--the rest of the family and even a friend.
Dr. Blair Bigham:
Did you ask them why they did that?
Louis Lochhead:
Not really. Maybe I could have or I should have, but at one point, honestly, after she woke up, I said, "Okay, let's deal with this situation. What's next?" And it's really to get her to go to the rehab hospital.
Dr. Blair Bigham:
Eventually, you were successful in your advocacy to have her transferred to a rehabilitation center.
Louis Lochhead:
Mm-hmm.
Dr. Blair Bigham:
And you wrote that developing trust with the caregivers at the rehab center came much easier than it did at the hospital. What was different about the rehab center? What can we learn from that experience?
Louis Lochhead:
It was very different. And if you let me, maybe I want just to go back to something very important, I had-
Dr. Blair Bigham:
Of course.
Louis Lochhead:
... a tough time convincing the doctor, the same neurosurgeon to transfer her to the rehabilitation hospital because he never thought that she would wake up. He never thought that she'd be in such a good shape to start rehabilitation and maybe was confronted to a diagnostic that was wrong or something. Maybe it was an administrative thing, I don't know. But he really had a tough time to sign the paper for her to transfer to rehabilitation hospital.
But when we did arrive at the rehabilitation hospital, we had such a great connection with the physiotherapist, the speech therapist, the occupational therapist, the social worker. They were great people, and they really, really worked hard to help Lorraine get better. And we even participated in the plan, the, how do you say that in English? Le plan d’amelioration, with all the different professional. The-
Dr. Blair Bigham:
The multidisciplinary plan.
Louis Lochhead:
Yes, exactly. Multidisciplinary plan with all the different therapists around the table. So we had opportunities to discuss with them what would be the plan, what would come next, and also our evolution.
So it was really like a teamwork. We really felt we were in partnership with those people and they were considering what was our plan is really to go back home, in a new home, adapted home and see her kids and so on. So we really worked together to make things better for Lorraine. So it was really, really a great experience and people were very professional and dedicated.
Dr. Blair Bigham:
Louis, before I conclude, I just want to ask, it's been more than a decade since the accident. How is Lorraine doing now?
Louis Lochhead:
She's doing pretty good. Of course, she's attained a plateau, so she's in a wheelchair. She cannot use her right arm or right leg. She still has some difficulty with the speech, the language, but she has good morale.
And what's really great about this whole thing is that she kept her good attitude. She's a smiling person, she loves people, and it really never affected her character yet it's difficult for her because she used to practice as a lawyer, she would plead, and she was very active.
She was training two, three times a week and so on. So it's been hard, but she's doing relatively well. And the good part is that her children grow up and becoming men.
Dr. Blair Bigham:
I'm happy to hear that. Louis Lochhead survived a car crash and served as an advocate for his wife Lorraine, who was seriously injured. He joins us today from [inaudible 00:20:14] Knights in Quebec.
Dr. Mojola Omole:
Dr. Lamontagne is a professor at the Université de Sherbrooke and an intensivist at the Centre hospitalier, Université de Sherbrooke. François, thank you for joining us today.
Dr. François Lamontagne:
Thank you for inviting me.
Dr. Mojola Omole:
So what was your initial reaction to Louis Lochhead's description of his experience?
Dr. François Lamontagne:
I found it interesting, a little bit challenging. Obviously, I could easily relate to the situation he was describing. I didn't feel it was an uncommon situation, and maybe not in ways that are as extreme, but similar situations occur I think fairly commonly. And I wasn't particularly proud that these things happen or that they would happen frequently, I think.
Dr. Mojola Omole:
What struck out to you most in the story?
Dr. François Lamontagne:
I think a number of things. The first thing that I think struck me was the fact that there quite clearly was a misunderstanding or a misinterpretation of the clinician's role, which is less to do things and explain what should be done and rather to engage in shared decision making.
And it was striking that there were, in various ways, this is not what had happened. So that's one thing that struck me for sure, the understanding of a clinician's role and the type of communication that these roles entail.
Dr. Mojola Omole:
So Louis described a conversation with the neurosurgeon who delivered oblique prognosis, but Lorraine exceeded the pessimistic expectations that were laid out by the treating team.
How do you navigate this sort of complex and difficult conversation, giving oblique prognosis, but still empowering? And then when there's a discordance into what happens, how do you approach that?
Dr. François Lamontagne:
So yeah, you mentioned something that brings up the second thing that struck me is recognition of uncertainty. So I think even when we're very certain of something, there's room for shared autonomy, patient autonomy to some degree.
And so in Mr. Lochhead's story, the traumatic brain injury is, in critical care world, a problem that's notoriously difficult to prognosticate. And so I think to your question, the real answer is I don't know, but I think the only good answer is to be transparent and honest and humble.
And in the guidelines world, values and preferences take precedence over evidence any day, but the less certainty you have that you know something, the more values and preferences matter.
And so I think that's the other thing that struck me, is in any area acknowledging uncertainty and being transparent about it seems quite healthy and fuels the need for autonomy and shared decision making and understanding values and preferences. But even more so when you're dealing with a situation where actually it's very hard to know or to predict the future.
Dr. Blair Bigham:
François, in Louis' case, he spoke about how the treating team seemed to have no hope. And I feel like that's a pitfall that I end up in sometimes where even though there's uncertainty, probabilistically, there's still a lack of hope, but patients exceed my expectations. Sometimes they recover far better than I ever thought they would.
How do you balance the probability of a really bad outcome with still trying to offer a bit of hope given the uncertainty without that hope being some sort of a false hope or sort of this sugarcoating that we worry about?
Dr. François Lamontagne:
The most you can say is that there talk about the risks and the probabilities and whether you assign number, figures to these risks and probabilities, probably not the... We tend to get the numbers wrong, but the big picture I think is what matters.
And so I think you absolutely have to be honest and communicate that there's a real risk of death. Are we sure that the patient will die? Probably not. I don't think.
The other thing that concerned the treating team is the real risk of very severe deficits that would, in many people's eyes, significantly impact quality of life. So you have to paint that grim picture and say it's a real possibility and potentially stop there because when I teach about this, I'll say that the same event could be unacceptable for some and actually quite tolerable for others.
And I'll give the... If the pleasure you get from life hinges on your ability to run marathons or I don't know, go logging on your lot, whatever, and you become paraplegic, it's a pretty bad situation.
If you're a pianist and you've never been physically active, and if you derive pleasure from playing the piano and having your grandkids on your lap to tell them story, it's the same event that has a very different meaning. And so I think the most that,I think our job is to explain what worries us, and accept that there's uncertainty, it could be surprising. Sometimes we're pretty certain, but I guess, try to be as honest as possible and then appreciate that the decision making will hinge mostly on the values and preferences.
So people will make different decisions, So for some people, the risk of severe neurological, Even when that risk is small, is enough to say, "I don't want any of that. Keep your tubes." And for others it's quite different. So I think that's the only sort of way to go about it up to a certain point, I guess
Dr. Mojola Omole:
In Louis's story, there was a big focus on the part of the broken trust, but to some extent, as you read through the narrative and you speak to him, it also seems like there was a lack of empathy and kindness.
This is someone who had a splenic laceration, was in the hospital, had two kids in a different hospital, and was still trying to take care of his spouse. And it seems that his experience with the physician, the neurosurgeon didn't seem to be that they were capable of communicating in a kind way. How much of building trust is about approaching patients with kindness?
Dr. François Lamontagne:
I mean, a big part of it, right? I don't know. What you said certainly resonates with me. And personally, I find it very useful to very explicitly remind myself that in healthcare there's caring. And that's the essence of it, is just that.
And you said, How I related to this, I not infrequently see this. When there is a disagreement, the bond or the glue that sort of holds the treating team and the beneficiaries, the patient and the family, that tends to become, that bond becomes weaker.
I've seen, and I've felt the frustration of, I'm not ashamed to say it. I know that this happened. So I think if you approach a situation from the perspective that you've given it your best, you've given your advice. And then if they don't follow your advice, if that becomes a source of frustration, I could see how that's a way to lose empathy. So I think that's the mechanism.
I think it's totally on us. I think that should not happen. I think it should be okay. That's something that I tried to address, in the commentary. I think you have to start the discussion almost reminding yourself that you have to offer more than one option.
You may have a very clear preference for one strategy, but you have to be able to live with the fact that they might not go with plan A and that should not make your bond or your responsibility or your ability to care for them any weaker.
And I think I can understand how frustration develops, particularly in, currently, I don't know if it's the same in where you work, but during the pandemic and then post-pandemic, there's this level of emotional exhaustion. And I guess our skins are getting a little bit thinner, and there's lower tolerance perhaps for the process.
You don't build Rome in one day, you don't automatically or immediately agree. There could be divergences, and I think it's okay. And so all of these, there are guidelines on this and there's evidence, and it's about regularly having regular points of contact and communication and updating and reassuring them that there is empathy, there is caring, there is a strong bond regardless. And there's less, I worry about the tolerance or patience for the process, but it's not a home run. You try to hit first presence at bat.
Dr. Blair Bigham:
How regular is regular? I mean, hospitals are busy places. Services are always overwhelmed. Intensivists can be pulled in every direction. I think it's even worse for hospitalists and internists who carry lists far longer than you and I do. How often should these, not formal family meetings, but updates or touch points happen to continue to build that trusting relationship?
Dr. François Lamontagne:
So I think it's very context specific, isn't it? Right? So depending on your area of practice, things change a lot faster than in other areas, and that would probably justify more frequent points of contact.
So the ICU versus other more, I don't know, the geriatrics. I imagine dementia evolves at a slower pace than septic shock. And I could imagine that it's, in both situations, quite important to have regular points of contact and updates and this multidisciplinary approach. But in the ICU, it could be much more frequently and during shorter periods than say in long-term care facilities.
But even in one given area, I think the situations may vary. So I feel like when I meet a family for a first time and a patient has had a severe trauma or septic shock or something of the, it often say things like the first days matter, and then you will probably, you might have to speak twice a day or once a day for 1, 2, 3 days. And then at some point things either improve very quickly or they deteriorate really quickly and you know what to expect, or things tend to stabilize, but then they're more stable. So those updates are not as frequently needed. It's very context specific.
Dr. Mojola Omole:
What steps can be taken to further empower patients and their families when we talk about the decision making process and end up securing a relationship of trust with our patients and caregivers.
Dr. François Lamontagne:
So that's not for me. I think there are, in my area, there are guidelines and there are studies and there's good evidence to guide how to optimize this, starting by listen twice as much as you talk. And start by listening, not by talking; try to clarify what the roles are.
So if in the ICU and talking to surrogate decision makers, making it quite clear that it's not their opinion we're asking about, it's for them to become the messengers of the patient, right? Because it's the patient's autonomy. And making that explicit makes it easier for them sometimes because it is a painful situation to be in.
And then maybe avoiding the granular intervention, specific sort of code tube, number of shocks, whatever and try to focus on the big picture, the values and preferences and the directions. And after listening and after understanding, not shying away from saying that having received this information, this is what I hear and this is what I would recommend. We could do plan A, but there's always plan B. And if you disagree with me that plan A is what would fit best with your loved one's values and preferences, then I'll still be taking care of you.
So making the roles explicit, being systematic and offering more than one option, keeping the big picture in mind rather than itemizing and then explicitly reassuring them that they don't have to agree with you. Certainly not immediately, and perhaps not ever.
Dr. Mojola Omole:
Thank you so much. Dr. Lamontagne is the professor at Université de Sherbrooke and intensivist at the Centre Hospitalier, Université de Sherbrooke.
Dr. Blair Bigham:
Well, Jola, I could probably talk for an hour about this. How about we start with you? What are your thoughts?
Dr. Mojola Omole:
It was really powerful to hear Louis’ story and the experience that he had and that it was quite impactful on him these many years later, how such a negative experience was.
For me, I actually do think it's commonplace in our hospital system that people have a feeling that they're left with not being treated with kindness. I think oftentimes we think that patients are asking us to give them false hope, but it's actually just to, as François said, to paint a picture of these are the options, and then empower them to make a decision that would suit what their loved ones would've wanted.
And I think that the crux of it is that most of us went into healthcare because we're kind and we care about people, but the process of becoming physicians sometimes beats the kindness out of us.
And the process of working in a hospital robs you of your mental and emotional capacity to be kind because you have 30 other things that will irritate you that day that are pulling on you emotionally and mentally, and that robs you of your ability to be kind.
Dr. Blair Bigham:
Yeah. I've heard it described before as an ATM or a bank, like your emotional reserve, and you can't just constantly be withdrawing from it. Sometimes you have to have something go back into it. And I don't think our hospital systems, particularly for nurses, I think it's even worse for nurses, but I think our system is designed to just keep withdrawing and not really help us top-up so that we have that emotional reserve to either slow down or sit down and chat with families in a more meaningful way so that we can build that trust, because I agree with Louis that trust has to be earned. It's not something that I should expect the minute I walk through the door.
Dr. Mojola Omole:
And I don't think, at least in my experience, I do not feel that trust, you need a long term necessarily to build trust. It's how you approach people. It's your first conversation with them, the first instance that really establishes that, "Okay, this is a person that I can listen to. This person is going to listen to me and is going to help me make the best decision for myself or for my loved ones."
Dr. Blair Bigham:
And I think frequency is as important or even more important than the actual duration. Just touching base frequently when you see families in the elevator, in the hallway, at the bedside when you're walking to another room, just like that two minute check-in, I think does go a long way. And it doesn't necessarily have to be this one hour meeting that you have every day with a family.
That's it for this week's episode of the CMAJ podcast. Please spread the word about the podcast by liking or sharing wherever you download or just by telling your colleagues and help get the word out. Podcrafts Production produces this podcast for the CMAJ. I'm Blair Bigham.
Dr. Mojola Omole:
I'm Mojola Omole. Until next time, be well.