Bioethicists Help Find the Way
Bioethicists Help Find the Way
Steph Bayer: Welcome to another episode of Studies in Empathy, a Cleveland Clinic podcast exploring empathy in patient experience. I'm today's host, Steph Bayer, senior director of the Office of Patient Experience here at Cleveland Clinic in Cleveland, Ohio. And I'm very pleased to have Dr. Jane Jankowski and Dr. Georgina Morley here. Dr. Jankowski, Dr. Morley, welcome to Studies in Empathy.
Dr. Jankowski: Thanks, Steph. Great to be here.
Dr. Morley: Oh, thank you.
Steph Bayer: So Jane's a staff bioethicist and the director of the Center for Bioethics at Cleveland Clinic in Cleveland, Ohio. She specializes in clinical ethics consultation to improve both the patient and the caregiver experience. Prior to working as a bioethicist, Jane worked as a hospital-based social worker. And Georgina's a nurse ethicist and the director of the Nursing Ethics Program at Cleveland Clinic in Cleveland, Ohio. The Nursing Ethics Program aims to educate and train nurses to develop expertise in examining ethical issues in patient care. She's recognized as an international expert in moral distress. Personally, having worked with both of you. I am thrilled to have this conversation today because you really are true experts, and you've taught me so much. So I'm excited to explore the conversation of how ethics and empathy can interplay. Let's start off. What does it mean to be a bioethicist, and what does it mean to be a nurse ethicist?
Dr. Jankowski: So being a bioethicist is such a fascinating field. We come at this profession from so many other formative training experiences. Folks come from different backgrounds, and some of those backgrounds include medicine, include law, philosophy, myself with a background in social work, as well as formal training in bioethics, Georgina with training in nursing and PhD work in philosophy and other fields. It really enhances what we're able to do when it comes to resolving complex, ethically-fraught issues in the clinical space. And so what I love about the field is that while many of the theories and concepts that are applied, in practice, can feel remote, very ivory tower, and isolated, this field brings it to the bedside and makes the application of all those concepts practical and reflective in order to allow our work to be real and to allow us to be present with other people.
Dr. Morley: And so my background, probably unsurprisingly, is in nursing. So that's a huge part of my identity. So I utilize the title nurse ethicist to really denote that nursing ethics is my specialty, because I look at all of the ethical issues that I face. I'm always going to look those through a nursing lens because that's my training. So I still have the same responsibilities as the other clinical ethicists on our team. So I still conduct clinical ethics consultation. I'm still able to step outside of that nursing lens when I need to. But generally, I would say that that tends to always be the way that I look at an ethical issue. It always colors my perspective. So that's one of the reasons that I use that title. And I think it's really helpful because it makes ethics much more relatable, I think, to nurses, and they meet me and they're like, "This is great. This is somebody that really understands the experience of being a nurse, the unique challenges that nurses face when providing care to patients and families."
Steph Bayer: If I remember right, you're our first formal nurse ethicist. Is that correct?
Dr. Morley: Yes. Yeah, I am.
Steph Bayer: I've done consults in which you were offering advice at really fraught moments of moral distress. And I will say that your ability to relate and your ability to understand the nursing perspective has been so helpful and so beneficial, and you can see it in the teams that they feel like they're being heard. And that, especially in times like a pandemic, it's so important, so thanks for being here with us and willing to step into this role for the first time for all of us.
Dr. Morley: Oh, thank you.
Dr. Jankowski: I would add, too, that one thing that I think Georgina has really facilitated in our practice, as a group, is to remember to include the bedside nurse in these conversations. When there are situations where the right path forward isn't clear, the nursing perspective needs to be a part of that dialogue. And I think for a long time, they had not been included regularly in some those dialogues. And so we're very grateful for that consistent reminder. Be sure you've got the nurse in the conversation.
Steph Bayer: So important.
Dr. Morley: Yeah, I think there's a ton of logistical barriers that can make it challenging when we do have a case, let's say in the ICU or on the nursing floor, because there's so many nurses and we can have cases that go on for weeks and weeks. And so it's so difficult to involve, obviously, every single nurse, but I think we do a really great job at trying to include them, trying to make sure that we're keeping them in the loop with the consultation activities, making sure that we're explaining the ethical reasoning and the analysis, and making sure that they're part of that communication and that decision-making, because the nurse is the one that's responsible for carrying out the plan of care. So they're so pivotal to formulating that plan of care as well.
Steph Bayer: Let's try and make it a little practical for people that may not have experience with ethicists. What are some of the more common types of ethical dilemmas that you might encounter at the bedside with our caregivers, such as nurses? And do you see a shift in the trend of cases?
Dr. Jankowski: So I'll begin to answer the first part of that question with what are some of the more commonly-seen questions. And I think I would have to say that one of those is the consultations that are requested on behalf of patients who are not able to make decisions for themselves. They're impaired due to illness or other conditions, and they have no other individual who is a part of their life authorized to step in and assist with decisions on that patient's behalf. It's, I suppose, in some ways, very sad how many people arrive to the hospital in this situation, where there is no known individual to contact on their behalf, and they're too sick to speak for themselves. So bioethicists are very, very often, and, at Cleveland Clinic, always expected to be consulted on behalf of these persons. Until they regain the ability to make those decisions for themselves or for the duration of their hospital stay, we continue to be involved to help make non-emergent decisions and help figure out goals of care, plan of care, and do our best to try to understand who that person is, has been, and what would likely matter most to them in the current situation.
Dr. Morley: And I think I would say... I don't know if this is necessarily the most common case that we get consulted for by nurses, but I think it's the one that can often cause a great deal of the different types of moral uncertainty, distress, and that's for patients who are declining nursing care. So whether or not they have decision-making capacity or not, I think that it's always a real struggle for the nurse providing care when they're really having to negotiate the care on a case by case basis. So if you have a patient, for instance, that's declining medications, they don't want to mobilize, they're declining assistance with personal care, those kinds of cases can be really, really tricky because, as an ethics consultation service, it's really difficult to give concrete recommendations to really help the team because the situation is often changing moment by moment.
Dr. Morley: And so I think those ones are really tricky because it requires a lot of ethical awareness, really strong skills in communication from the nursing team to be able to negotiate that in a way such that the patient still feels respected, and we're obviously maximizing the benefits, but whilst also minimizing the harms to them. I think sometimes people don't think of that necessarily as being over a ethics issue or ethics case, but those are the ones that I always really struggle with as the ethics consultant, trying to give really practical advice to the nursing team and other members of the healthcare team as well.
Steph Bayer: I had who handles patient behavior issues in here, previously, and he said that during the pandemic, there's actually an increase in, I think he called it, incivility in some of the workplace violence and how exhausting that is for our caregiver teams. I imagine some of the negotiating with patient care on top of knowing that there's an increase in instability in workplace violence has to be exhausting for our bedside nurses.
Dr. Morley: Yeah. I think that that has really contributed to a lot of the burnout that we're seeing within nursing.
Steph Bayer: And then your lens is to offer some practical tips to get through this without having to carry that additional ethical component and offer that solution. So that is so important of a service, and I bet a lot of our listeners are all wishing that they had nurse ethicists as well, so thank you for sharing that. Are you seeing a trend, though, in the last two years since the pandemic has started in the consults, or have these been consistently the types of cases that you've engaged with?
Dr. Jankowski: That's hard to answer, because I think we have always been a service that steps in at particularly challenging points in a patient's hospital or healthcare course. So I sometimes have said, "Well, we have a skewed vision of what goes well and what doesn't go well," because we're consulted on those that are more difficult and more stuck, or there are some communication issues or difficulties in the groups that need to come together in hearing each other and getting along and being civil. So it's hard to say if there is actually an uptick from our perspective because that's always where, I think, we step in to these issues.
Dr. Morley: I think the one thing that continues to be new within the field, though, it is just around the changes in technology because even though some of the core ethical issues remain the same, when you have new technologies that are offering additional life extension and different forms... So think about being from a cardiac background, I always think about those devices like LVADs, ECMO. These are life-prolonging, life-extending technologies. And so bioethics has to keep up with these advancements in technology. So I think that that's probably been a shift and will continue to be a shift, alongside medicine, as medicine innovates and continues to develop. And obviously, being part of the Cleveland Clinic, where we're continuously innovating. I think it really keeps us on our toes.
Steph Bayer: So you need to keep up on the medical innovations and the clinical offerings, but talk to me about what our providers, our nurses, and our caregivers that are at the bedside are trained in when it comes to ethics in school. Do you think that they are given the necessary and appropriate training to do the job? Do you think there's opportunities there to prepare them for the real-world ethical dilemmas?
Dr. Jankowski: I think the training varies quite a bit across program, across learning institutions, and how that is incorporated into the various curriculums is very different. Some will have specific courses or immersion experiences. Others will have longitudinal courses over the time that they are in training. What I can speak to is the feedback that we have received from individuals who come and spend a period of their clinical rotation with our center, on service with us in the clinical ethics consultation portion of our work. And rotators are trained at various levels. So some are in residency programs, others are medical students, and some are credentialed, practicing physicians who come and spend a week or so with us to partner and be side by side with us as we work through a day on the consultation service, or even up to a month on the consultation service.
Dr. Jankowski: By and large, I would say almost unanimously, the feedback is, "Wow, I had no idea, and I can't believe what I was able to learn from watching and listening to your work." Some have said that that experience was one of the most useful portions of their training rotation experiences, because it really does translate a lot of theory, a lot of things that seem very esoteric, or commonsense into how it plays out at the bedside with a lot of complexity. So I think that while programs may have some pretty robust opportunities to learn elements of ethics, there's nothing quite like seeing it in action.
Dr. Morley: Yeah. I would agree. I mean, thinking about the training of nurses, in particular, again, I think it is hugely variable and really depends on the different nursing schools. There was a nice study, it's fairly old now, from, I think, 2008 which was authored by Christine Grady and one of her close collaborators, Connie Elrick. I think there were several authors of the paper, but they looked at ethics education and the impact on ethics education on moral action, looking at both nurses and social workers. And what they found was that social workers actually had a little bit more ethics education than the nurses that took part in their survey and that greater ethics education was also correlated with greater moral action, which I think is fairly intuitive. So if you have less ethics education, you have less confidence and you are unable to act as ethically as you might otherwise be able to.
Dr. Morley: So I think that that really... For me, that really highlights the importance of having really good ethics education because it gives you these skills in ethical analysis that you can then apply to a clinical situation and determine what the possible actions might be. And I think sometimes it is more than one action, more than one ethically-supportable pathway forward, but we should be giving nurses and social workers and all of our caregivers that basic, at least, ethics education so that they can work through an ethical challenge in their day-to-day practice. And yeah, I'm not sure that we're preparing people as well as we should be in their nursing school, social work training. So I mean, I think we're a bias sample, but I would always advocate for more ethics education.
Dr. Morley: I think the other big challenge, from a nursing perspective, is just finding the time. The curriculum is already so packed. So one of the things that we've also been doing, as part of the Nursing Ethics Program, is trying to incorporate more opportunities into our program for nurses to utilize. So we had a couple of nursing ethics interns that joined us over the summer. So we had two nursing students that spent 10 weeks with us. So they got to take part and shadow the ethics consultation service. They were able to sit in on moral distress, reflective debriefs. We did a journal club. So this gave them some really amazing exposure and, I hope, will form the way they think about ethics for their future careers. And then we've just launched a nursing ethics faculty fellowship. So Diana Copley, who is a CNS [inaudible], is our first ever nursing ethics faculty fellow. So she now has got some protected time to work on ethics projects with us. And I think it's about creating those kinds of opportunities so that caregivers are able to really dive into ethics and learn a bit more so that they can really promote patient values and make sure that we are doing the right thing when we care for patients and families.
Steph Bayer: So important. And I love the idea of creating the opportunities to actually see the work because that's how adults learn, by see, do. So if you have these fellowships and you have these shadow opportunities within the clinical realm, what will I actually see at Cleveland Clinic at how our patients and our caregivers are supported during ethical dilemmas?
Dr. Jankowski: I think sometimes it's about having enough awareness of the situation to recognize that the challenge is indeed an ethical dilemma or that it actually has a component of ethical uncertainty. And recognizing it is the first step to beginning to find a pathway forward, whether that is pausing in the moment to say, "Well, let's think about this. Do we have a clear sense of what the right thing to do is, or are there competing interests that might need us to include the ethics service and talk about those competing interests to make sure that, of the options that are available, we are doing the best thing?" So I think recognition, education, and awareness will eventually help people do some more of those resolutions in real time but also probably get input from the professional staff ethicists, perhaps, sooner rather than later so that, if there is an unfortunate situation evolving, we can support changing course or staying course, depending on what the best thing to do is.
Dr. Morley: Yeah. And I mean, I would say that being somebody that thinks about moral distress all the time, I mean, I think that we're super attentive, during consultation, to also try and identify when caregivers are struggling with moral distress. The way that I think about moral distress is a little bit different to the standard definition that you can find in the literature. I think that we experience several different types of moral distress, and they kind of denote the moral problem that is then causing that distress. And I think often what we find, in ethics consultation, is that our caregivers are experiencing moral uncertainty distress because they're really not clear on what the right pathway forward is. And so what we're trying to really do, in that consultation process, is to unpack, with them, the various kind of ethical values that are coming into play, coming into conflict, and trying to work with them to identify, as Jane said, the best pathway forward, because often, there is this compromise. We might think this is the ideal state, but we can't always achieve that. So it's really identifying, in this constrained environment that is the real world, how do we maximize the benefits for this patient?
Dr. Morley: And we hope that, in working through those steps with caregivers, what we're able to do is to help mitigate the moral distress that they're experiencing by partnering with them, by supporting them through that moral problem, and not just coming in as the ethics expert and saying, "Do this" and then we're done. We really pride ourselves, I think, on collaborating and really working closely with the team to support them and not being the ethics police, as you sometimes see in the literature in clinical ethics.
Dr. Morley: And then, for those cases that are really complex or really protracted, we also provide moral distress reflective debriefs. So we have these safe spaces that we will spend an hour with caregivers to really unpack the complexity and the moral distress that they're experiencing in relation to these patient cases. And we've also been doing some of those just in relation to the pandemic because caregivers have really wanted to just unpack the massive experiences that they've had over the 18 months. So I think we're really attentive to trying to make sure that we provide really robust support to caregivers during consultation.
Steph Bayer: Let me ask you this. To be an excellent ethicist, as I know both of you are, and to find that that best way forward, is empathy a precondition in ethics?
Dr. Jankowski: I think the field itself... For folks who may be listening, the field of bioethics is actually, as a professional service, is fairly young when it comes to the scope of healthcare delivery and all of its evolutions, but it was founded out of concerns that bad things were happening to people without their knowledge, without their permission, and sometimes without their ability to have any say whatsoever in what was happening to them or to their loved one. And so, if we think of that as one of the founding experiences that helped drive the field into a profession, what does it mean to be a humane person, a humane provider? I think in that sense, bioethics, it's intertwined in the reasons we do the work that we do. Can you have empathy at the center of every encounter, every experience as an ethicist? I think that it would be aspirational to be able to say that we can feel with each moment of each encounter. But I think the field itself is largely built on some building blocks that include empathy, humanity, respect for persons, dignity, and honoring truth.
Dr. Morley: I like to think about empathy and, I think probably, to some extent, compassion as being on a dimmer switch, because I think we need to be really careful, as caregivers, about over-engaging and also under-engaging with patients and families, because if we were to feel with... If we were to connect so deeply with every single patient that we took care of or every grieving family that we came into contact with, I just think that we would burn out. And, in some ways, maybe that is why people do experience burnout, because they are really, really over-engaging. So I think it's about finding this middle ground of making sure that you are respecting that person, you are putting their values... Their values are clearly a priority in the plan of care. They feel that they're being treated with dignity, but without giving yourself or losing part of yourself with every loss because I just think it's a marathon. It's not a sprint. And so it's about how do we connect in meaningful ways but without feeling like the cup is empty and we have nothing left to give. So I think that empathy is hugely important in everything that we do in healthcare, but I think we need to be mindful.
Steph Bayer: The cup can empty for sure. And burnout and the resilience is a real concern during this pandemic, especially. Can we switch a little bit and talk about just the ethical climate during this pandemic, during COVID, and maybe offer our listeners some effective, practical advice on how to combat the moral distress and the burnout that they're experiencing. Doctors and nurses and bedside caregivers have a lot of burnout right now. How can ethics, and some of the practical principles that you support, help them?
Dr. Jankowski: So I'll start because I know Georgina has a wealth of information that she can share on this. I think one thing that has come to be very clear to me, in my own practice as a clinical ethicist, is that the value of partnering with caregivers... "I'm here with you. I'm going to work on this issue with you. I know you're tired. I know this feels endless, but nonetheless, I can step in and help facilitate a path forward, not for you and not in your place, but with you." And I think sometimes that helps alleviate some of the isolation of being a caregiver during COVID, where units have been closed, where there are all kinds of physical barriers now between caregiver and patient for safety, for good reasons, but it shifts how it feels to be a caregiver.
Dr. Jankowski: Having so many losses, so many patient deaths in that setting, where there are some very real barriers to how we would ordinarily be able to act, if you need to step away from a case, if it's too emotional, you now have to un-gown. You have to take off a shield, a mask, gloves, gown for a moment of peace. And then, to go back in, you have to put on the gloves, the gown, the shield, the mask, all the protective equipment. And I think that just having a partner there sometimes to talk through these issues has been one way to help front-line caregivers cope.
Dr. Morley: I think it became more apparent a few months into the pandemic when it was clearly a huge public health emergency, and we needed to consider allocation of scarce resources. And, in a public health emergency, you have a number of things that you need to juggle. And I always think about it as stuff, space, and staff. That tends to be the motto that you'll see in the literature. And the big concern, for me, was always really around how you would manage the psychological resources of healthcare workers. And I think that that has potentially ended up being probably the biggest challenge, arguably within healthcare, of the pandemic. And we see that in the burnout that people are experiencing, and we see that in the moral distress that people are experiencing.
Dr. Morley: And I guess it's important that we distinguish between those two concepts. Burnout is... It's the psychological syndrome. It's made up of emotional exhaustion, depersonalization, and then this reduced sense of personal accomplishment. So it's really this kind of psychological concept. So I think that that points to one of the ways to mitigate burnout, and that's about really prioritizing your mental health, coming up with ways in which to take care of yourself, both physically and also mentally, making your mental health a priority, making sure that you are finding ways in your day-to-day life to put yourself first. Whether that's going for a 5, 10-minute walk in your day between meetings, because you've been sat at the computer Zooming all day long, or if you are a nurse or a caregiver that's been running around all day, making sure that you're taking your break and having that cup of coffee and eating so that you can refill and you can refuel, taking that time at the end of your shift to, yeah, chat with a colleague to seek that peer support to really unpack some of those experiences that you've had. I think those are some of the psychological tools, I think, in our toolkit.
Dr. Morley: Moral distress really is different to burnout in that there is this moral component. There is this ethical question, whether that's related to the care of a current patient or if that's questions that you are asking yourself about a patient that you took care of a few days ago. And so I think that that requires a different type of unpacking. And I think, again, peer support can be really helpful for that to unpack it and say, "This was what I was seeing. This is what I was feeling when I was taking care of this patient. What's your sense? Do you think we did do the right thing here, or should we have done something else?" And then putting together an action plan of, "Okay, if we didn't do the right thing, then who should we speak to about making sure that we do better next time?"
Dr. Morley: But I mean, essentially, I think with moral distress, everybody really wants this easy answer, this easy solution to try and address it. And I think there's really no super-easy solutions. And I also talk about always wanting to mitigate moral distress or to reduce the negative effects. It's not about getting rid of moral distress entirely, because I think it's actually really healthy to experience a certain amount of moral distress because it shows that you're connected, that you're seeing the ethical issues that you're understanding of the values that are coming into play. So it's about identifying when the moral distress that you're experiencing is becoming too great or the negative impact of that moral distress is leading you to think, "Wow, I need to leave the ICU. I need to leave the ED. I can't keep doing this anymore." And we have a few tools in our toolkit here at the Cleveland Clinic. So we have our moral distress reflective debriefs that can be requested by any caregiver. And so we partner with our EAP, close collaborator of ours, Laura Longbrake, and we will facilitate these safe spaces for people to unpack their experiences. And that's one way to respond to moral distress, I would say, on the back end.
Dr. Morley: We obviously have the ethics consultation service. If the moral distress that you're experiencing is in relation to the care of a current patient, we can help to try and provide that ethical guidance, but I would say... We recently did a review of the literature, actually, to look at what are the interventions out there that have been developed to address moral distress. And I think that this ties us very nicely to one of the previous questions. Actually, the most promising intervention was ethics education. And so, of course, that's not something that is very easily initiated in the middle of a pandemic. That's something where we're going to have to start thinking about the future. How do we prepare healthcare professionals, caregivers better in the future so that they have some of those skills to address their moral distress but then also build into their careers these mechanisms of self-care and self-compassion?
Steph Bayer: That's an excellent way to leave this because I can't improve upon some of that analysis. I will say, though, that we are so lucky here at the Cleveland Clinic to have a team that includes the both of you and other colleagues. It's not easy, and it is easier when we have both of you and your skill sets, so thank you so much.
Dr. Jankowski: Well, Steph, thank you. And I want to shout out to all that you do, as well, in patient experience and in helping the toughest of the tough cases move forward. We're mutually interdependent on each other's skills to deal with what we deal with, as well as navigate the long road of what this pandemic means both now and for years to come. I think there will be uncertainty for a long time, and no one group or one individual can or should carry this. So it's about the partnership, and it's about being able to reach out and say, "I don't know what to do with this situation that's in front of me. I want to do the right thing. Can we get there?" And I think all of us are grateful to have each other available to work through that.
Steph Bayer: Absolutely. And that connection, I think that's really what empathy is. And I'm glad that we have it with each other and that we can build it for our teams and our patients. You guys are amazing. Thank you so much.
Dr. Morley: Oh, thank you.
Dr. Jankowski: Thanks, Steph.
Steph Bayer: So this concludes the Studies in Empathy podcast. You can find additional podcast episodes on our website at my.clevelandclinic.org/podcast. Subscribe to Studies in Empathy podcast on iTunes, Google Play, SoundCloud, Stitcher, or wherever you get your podcast. Thank you for listening. Join us again soon.