Perspectives on Safety—New Insights Into Apology and Disclosure Programs
An accompanying interview features Jennifer Schulz Moore, LLB, MA, PhD, Director of Learning and Teaching at the University of New South Wales Faculty of Law and an Associate with the University of New South Wales School of Public Health and Community Medicine. We spoke with her about disclosure and apology in health care as well as the intersection between health and legal systems in Australia, New Zealand, and the United States.
In Conversation With… … Jennifer Schulz Moore, LLB, MA, PhD
Interview
Download: (april_2019_moore-podcast.mp3 | 10 MB | 7 minutes, 19 seconds )
Editor's note: Dr. Schulz Moore is the Director of Learning and Teaching at the University of New South Wales Faculty of Law and an Associate with the University of New South Wales School of Public Health and Community Medicine. Prior to joining the University of New South Wales in February 2017, Schulz Moore was the 2015–2016 Harkness Fellow in Health Care Policy and Practice at Stanford University. Her research in health law draws from her unique training in public health, law, and health social sciences. We spoke with her about disclosure and apology in health care as well as the intersection between health and legal systems in Australia, New Zealand, and the United States.
Dr. Robert M. Wachter: What got you interested in the legal aspects of health care?
Jennifer Schulz Moore: I got really interested in the intersection between the health and legal systems when I was studying for my PhD [in epidemiology] and felt that it would be useful to learn about medical law to see how those intersections played out. My main interest is working out how we can use the law or regulatory tools to prevent poor health outcomes and also to promote better health outcomes. So, using the law as a tool for public health promotion.
RW: Tell us about the legal system in Australia as it pertains to medical mistakes. How are things organized there?
JM: Michelle Mello, Marie Bismark, and I did some research in New Zealand rather than Australia, so it might be useful if I speak to both. In the 1970s, New Zealand got rid of medical malpractice litigation, reformed the whole torts system, and decided to replace it with an administrative no-fault scheme, which in New Zealand, we call the Accident Compensation Corporation (ACC). Essentially, it means that someone who has an accident and injures him or herself, including say an American who goes to New Zealand and bungee jumps and is injured, may file a claim to this corporation in New Zealand and get help with fixing the injury, some compensation, appointments to a physiotherapist, etc. So, rather than suing the person who we deem "responsible" for the harm, it's administered by the government and the injured person doesn't have to prove fault.
My very brief summary of Australia would be that it's more similar to the United States compared to New Zealand. In Australia, like the US, the tort system still exists. When I teach torts to my students at the university here, I'm teaching many of the same concepts that I might teach in the US to tort students at, say, Stanford Law School, whereas in New Zealand it's quite different because we have replaced torts with the administrative no-fault scheme. I've been speaking to people from New South Wales Health in Australia about the American research. They read it and thought many of the findings could be very useful to the hospitals in Australia because medical malpractice litigation occurs in Australia just as it does in the US.
RW: How did New Zealand make that change? I imagine in the US, and probably in Australia, it would be massively controversial moving in that direction. Politically, how were they able to make that happen?
JM: The history is interesting. From a practical perspective, New Zealand is a much smaller jurisdiction, and we have one national governance system. It's not like Australia and the US, where you have the federal jurisdiction then you have the states underneath it. In New Zealand, it's less complicated legally and politically to push big policy moves through.
RW: I imagine that, even with a more communal approach to problem solving, there still would be concerns about the lack of blame where blame is appropriate. How did that play out politically, and what has the evidence been since the system went into place?
JM: You can imagine at the time in the 1970s, many New Zealand lawyers were alarmed about this proposal and felt that they may lose their jobs. But that's not what has happened. There are now many lawyers who specialize in ACC law. So, the reverse has been the case, and it hasn't been a problem for lawyers. Even today, we still see articles that talk about the problems of not being able to blame someone for the harm suffered, particularly in the health care space. For example, there have been cases involving parents who have lost a child to a medical error who say that they felt dissatisfied with just going through the ACC system. They also wanted some other kind of accountability. But it's important to understand that in New Zealand, just because we have ACC doesn't mean that we don't also have accountability. We do, it's just not through torts.
In New Zealand, if parents who lost a loved one to a preventable error feel like there must be something else they can do, they feel like "blaming" someone, they can complain to the Health and Disability Commissioner, another government body. The patient or the family can submit a complaint to that organization, then that organization will investigate and can make recommendations and so on. If the person sadly died, the family can also go to the Coroner's Court, and the coroner will investigate what the cause of death was. Although we've replaced torts with ACC, there are other accountability avenues that may address this issue of blame or accountability that you raised.
RW: In a system where one might naively assume that all you have to do is demonstrate you were harmed, what are all these lawyers doing?
JM: Well, there's lots of law now on ACC. For example, in the "medical malpractice" space (what we call "treatment injury" in New Zealand), an example of that might be if a patient had a preexisting medical condition, say a heart condition, then went to a hospital to have heart surgery and the allegation was that the surgeon made a mistake during the surgery. The legal issue for the ACC lawyers, under the ACC legislation, may be this—does that particular error constitute an error, or was it the result of, or "caused by," the preexisting injury that the patient had? There will be legal debate about whether the cause was the preexisting injury or the actual medical error or perhaps percentages [of cause] will be assigned to one or the other. That's probably one of the more complex areas. As you know, many patients do go into health care organizations with preexisting conditions, so you can imagine how often that legal argument might arise.
RW: The notion of apology and disclosure programs is still relatively new. In the US, I first learned about them with the Lexington VA study and the early Michigan studies probably 15 or so years ago. What was the original rationale for that new approach to this more tort-driven system?
JM: Trying to better meet patients' needs and dissatisfaction with medical malpractice litigation from both the practitioner/hospital side and the patient/family side. Those are the two key reasons.
RW: Stepping back from the medical malpractice world, were there analogies in other fields driven by tort law that were useful in thinking about the potential value of apology, disclosure, or early settlement—just a different way of dealing with it?
JM: There are other models. For example, in criminal law we have things called victim impact statements, where the victim of the crime will be able to write up how he or she felt about the experience of that crime and read it out in court. In the Coroner's Court in Australia and New Zealand, often the families can do a similar type of thing. This all taps into this idea of trying to address the needs of the injured or harmed person. The communication-and-resolution program (CRP) model didn't just come out of nowhere. Similar things were happening in different areas of law. When I spoke to the New South Wales Health Minister, he mentioned victim impact statements and said that he would like to see something similar introduced in Australian hospitals for injured patients, and it's something that Michelle Mello, Marie Bismark, and I have written about in our paper on the American CRPs. So yes, these ideas didn't come from nowhere; there are examples dotted around in other fields of law.
RW: You've done some very important research in this area. How would you summarize your findings and what about your findings has surprised you?
JM: Let's start with what surprised me. When I first started the research, I had been influenced by some literature that talked about the role of lawyers, particularly plaintiff lawyers, and there was some debate about whether the role of those lawyers was particularly useful. What was interesting about our findings was that 35 out of the 40 respondents said that including plaintiffs' attorneys was very helpful. In one sense, you can see why that might be. For example, a plaintiff's attorney could say to the patient, "This compensation offer that you're getting from the hospital is actually fair"; whereas, the patient might be a little bit suspicious about whether the hospital is actually being fair in a compensation offer. The really interesting thing was that many of these patients described their lawyers as "angels"—that is an actual quote. The thing that was very surprising was that these angel-like lawyers were able to help the patient and the hospital restore the broken trust. When we think about lawyers, the stereotypical lawyer, do you imagine her or him restoring trust and rebuilding relationships? If we asked most people, they probably wouldn't describe a lawyer in that way. But in fact, these angel-type lawyers were helping rebuild the relationship and the trust between the injured patient, the practitioners, and the hospital. I thought that was an awesome and surprising finding.
The other interesting and important finding was that when we interviewed the institutions, they would say they told the patients and families about what patient safety efforts they were going to undertake. But when we spoke to the patients and families, 24 of the 30 said they didn't get any information about patient safety improvements. The literature is very consistent and says that patients and families need to know about these patient safety efforts. It's extremely important. Yet according to our data, it still has not been undertaken or not been undertaken well.
The other important finding is that we heard loud and clear from patients and families that they want to be heard. We use this phrase "to be heard" in the paper. It's more than just letting patients talk. It's about letting patients' priorities drive the conversation. For example, one injured patient wanted to talk about how the injury had adversely impacted her ability to take care of her house and do the housework. The clinician wanted to redirect the conversation back to what he felt was clinically important, i.e., not the housework. When I interviewed this patient, she said thank you so much for this conversation. You're the first person who has listened to how this injury has impacted me. Not being able to do the housework is important to me, and no one has actually listened to that before. She felt it was quite cathartic to be able to talk about that. One of the key messages from us to institutions is please don't assume that we know what patients want. Listen to them and take the time to let them lead the conversation and talk about what they feel is important, and don't feel as if you're wasting time by doing that. In fact, you may actually save time because giving patients a good amount of time at the start to talk about what's important to them will be beneficial in the long run.
RW: You've given us some insights as to what makes an effective disclosure and apology. What are some of the other insights from your research about how to do this well?
JM: Something that was important was that patients and families wanted the attending physician to be in the room and to listen without interrupting. Sometimes the health care facility will make a decision that the attending physician is too traumatized or upset to participate in this conversation or series of conversations, so a substitute person will be taken along to those conversations. The patients and families were not sympathetic to that idea at all. They wanted the person who they felt was their main provider to be in the room.
RW: Even if, for example, a nurse had committed the error?
JM: Absolutely. If that were the case, they would want the nurse in the room too. Whoever the person or people they perceived were directly involved in their care. Normally it's the attending physician, but yes, if it was the nurse then the nurse should be there too. The next question we often get is what if these particular practitioners are not just traumatized but also "not a people person" and not very emotionally intelligent. Our key message here is remember that the most important role for that practitioner is to listen and to let the patient lead the conversation. So yes, you can have coaching and training for the practitioners, that's great. However, it's also important to recognize that the practitioner's job there is not to be talking all the time. It's to be listening to what the patient needs and wants and not assuming that we actually know. One of the dangers in this field is having a checklist. Checklists can be helpful elsewhere in the health care system, but here patients get upset if they feel the practitioner is just coming in, talking, working through a checklist. I've done the apology, check. Now patient, why are you still crying? That's an example from the research where practitioners said to me, "I told the patient I'm sorry and then she was still crying. What was that about?"
RW: How about timing? If I was on clinical service and something terrible happened, should it be that afternoon? Should we wait for a period? Often an investigation needs to happen to elucidate the facts if it's a complex error. How do you sort that out?
JM: The short answer to that question is it depends on the patient, which I know can feel frustrating to the organization and the practitioner, but it is important. Again, in that initial meeting, we need to listen to the patient and the family and their needs and try to get a sense of what kind of timing will work well for them. What we can say is that leaving those discussions very late in our experience is unhelpful. However, one does need to be a bit careful about whether the initial approach happens within the first 24 hours or the first 48 hours, and again there's no rule.
RW: You've probably both heard and then studied a variety of different ways of apologizing. What do you think is the best?
JM: Again, it depends on the patient. Apology is absolutely important, and we know that from prior studies too. Try not to assume and try to avoid scenarios like the one I described earlier, where we have a clinician who has been taught that one must apologize and does so, then believes that that will be the end of the disclosure process. Some patients want an apology and other things. For other patients, it's not all about the apology. They're more interested in something else. I'll give you two examples. One was a young patient, and she said, "What really mattered to me was that the clinician came and spoke to me, wrote a letter afterwards, actually that reaching out and spending time meant more to us than the apology that came later." For another family who lost their child, it wasn't so much all about the apology, it was more about patient safety efforts. They wanted a remembrance put around the hospital, for example a room named after their child, so there was a constant reminder to clinicians about what happened. Apologies are important, but begin with listening and asking what patients need rather than assuming that the apology is the first thing. When we do get to the apology part, be careful to execute it well. What do I mean by that? For example, the apology should be culturally appropriate. In our New Zealand research, for example, we found that with the Maori population, including a statement of forgiveness in the apology was very important culturally for them. There are those kinds of elements that we need to be aware of when making an apology as well.
RW: Often the question is "I'm sorry that this happened to you" versus "I'm sorry we committed a terrible error and this happened to you." How do you parse those two choices?
JM: Many patients said to us that they find the apology that says something like, "sorry that this happened to you" rather unsatisfactory because they would rather that someone, as one patient put it me—"own it." So say, "My bad that this happened." When we talk to clinicians about this, many clinicians will express fear about making an apology like that because they're concerned about liability issues. But the research tells us that when clinicians are open and approachable and make the kinds of apologies that say, "This is what happened and we are terribly sorry about it," those patients are less likely to be motivated to sue. Again, it can be a hard message for organizations and clinicians to hear, but it's certainly the message that we got from patients when we interviewed them
RW: Often when we talk about apology and disclosure, the issue of early settlement gets tacked on. In the American system I assume that it's unusual that the next day as you're sitting down with a patient apologizing, you're in a position to say "and we'll be sending you a check for $150,000." Maybe organizations have thought that through and are quite proactive about it. But if you believe that health care provider or delivery organization was at fault, where does the settlement fit in?
JM: The question of compensation was interesting in our research. Because the CRP staff would say things like our approach is "Don't wait for the demand. Present the offer and be proactive as you see it." However, when we talk to the patients they routinely said to us, "We did not feel that the offer was sufficiently proactive." Indeed, some of the patients didn't get an offer; they had to request a compensation payout. There were quite different approaches on the organization versus the patient side. In terms of timing, we heard loud and clear from patients that the money should come as quickly as possible because there are lots of bills to pay. Mortgages and rent, etc., all the bills come flooding in. Payments to fix the medical problem, for example. Many people talked about how if the hospital covered their cost to rehabilitate and there were no disagreements about that, that was extremely helpful. On the flip side, if the hospital didn't do that and the patients had to pay out and then get reimbursed, they found that extremely stressful. Those kinds of financial stresses exacerbated the way they felt about the injury emotionally and psychologically. It can be helpful for the hospitals to think very carefully about this in terms of speedy reconciliation of the whole injury experience.
RW: Did you find hospitals that did this well and were able to make a real offer of compensation within a few days after an injury had happened?
JM: Yes, absolutely. We had a really lovely example of that, in our US paper we referred to it as the personal touch for compensation. It was a patient who said that the claims agent went to his house. She was very sensitive. She expressed how terrible she felt about what had happened. The patient said how she just humanized the whole experience. He appreciated her going to his house and spending time and that they had a lot of conversation back and forth about what his financial needs were. There were several points that he loved about it. One was the personal touch. Another was that the approach was early. And the third was that all the conversations about compensation were not adversarial. They were very communicative, proactive, and those particular agents also listened to the needs of the patient. So, there were examples where this was done very well and the patient expressed that in the interviews.
RW: Anything I haven't asked about that you'd like to talk about?
JM: Yes, I'd love to talk about children. We didn't have a big sample, there are only three, but they were quite interesting. We had a patient who was almost 15 years old when she was injured. She was excluded from the CRP process because the hospital felt she was too young. It was her parents, primarily her mother, who went through the process. When she participated in our research, she said she wanted to do this research because she felt excluded. Years later, she still didn't feel like this was resolved for her because she had never seen those doctors and nurses again and was never involved in the communication. No one reached out to her, so this had never ended for her. One great thing about this research is that we were able to reach back out to that hospital, tell them about that young patient's story, and the hospital has reached out to that patient and had a conversation with her. She's absolutely delighted and emailed me and said this is such a great outcome for her from the research. She had been feeling awful and psychologically traumatized, and now she's enrolled in university and hoping to go to medical school and specialize in this area. It's a really beautiful story.
The other thing is children who are siblings of an injured child. We had one young boy who was 11 years old. He said to his mother, I'm really upset by what happened to my sister. Nobody has invited me to these communication-and-resolution program discussions, and I want to be included. So again, our message for the hospitals is—don't just look at the age of the child and say too young, we won't include them. Particularly if the child is the injured patient. It's really important to make an effort to at least ask the parents and the child if they want to be involved in the conversation. Some may not wish to be, but don't assume, ask. Some children are very emotionally intelligent, and it should be based on maturity rather than just the age.
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