Bioethical Considerations in Today’s Neurology and Neurosurgery Practice

Podcast Transcript

Alex Rae-Grant, MD:  Neuro Pathways, a Cleveland Clinic Podcast for medical professionals, exploring the latest research discoveries and clinical advances in the fields of neurology, psychiatry, neurosurgery and neurorehab.

In the fall of 2019, ethicists from six major academic medical centers published an article in The Journal of Clinical Ethics on the emerging role of clinical ethicists. They argued that rapid changes in healthcare delivery, outcomes and patient expectations increasingly demand that clinical ethicists be integrated into the interdisciplinary teams that routinely serve patients. The recommendation applies to all specialty areas, including neurology and neurosurgery.

In today's episode of Neuro Pathways, we're discussing the bioethics issues that face neurologists and neurosurgeons in practice today as well as the unique approach Cleveland Clinic takes to support patients and providers.I'm your host, Alex Rae-Grant, neurologist in the Cleveland Clinic's Neurological Institute and I'm pleased to be joined by Lauren Sankary for today's conversation. Lauren is associate director of the Neuroethics Program and Neuroethics staff in a joint appointment between Cleveland Clinic's Neurological Institute and Center for Bioethics. Lauren, welcome to Neuro Pathways.

Lauren Sankary, JD:  Thank you for having me.

Alex Rae-Grant, MD:  Lauren, you hold a Juris Doctor degree and it's a very unique degree for your role. So let's start off finding a bit more about your path to this role. How has your career lead you to a profession in bioethics and neuroethics, specifically?

Lauren Sankary, JD:  So I found my way to healthcare ethics relatively early in my career. And I chose to study law, part out of recognition that that fear of liability can sometimes complicate communication in healthcare. And while the law provides a framework for some of the minimum obligations that we owe patients, at the same time, bioethics goes beyond those basic obligations to help clinicians figure out how to fully discharge some of the more complex obligations and aspirations clinicians have in treating patients. So I was attracted to ethical challenges in neuroethics, specifically, given the added uncertainty that sometimes accompanies prognosis in neurology and the importance of our brain to our ability to communicate about what matters most to us as individuals.

Alex Rae-Grant, MD:  So you have a very strong role in the ethics program and neurology and neurosurgery. Can you tell me and the listeners more about the role you play in the care of neurology and neurosurgery patients at Cleveland Clinic?

Lauren Sankary, JD:  Sure. So as a clinical ethicist with a specialization in neuroethics, I provide ethics consultation, both in the inpatient and outpatient settings at the Cleveland Clinic. The majority of my work is in conjunction with our Epilepsy Center and our Center for Neurological Restoration, which is the group that provides deep brain stimulation for patients with Parkinson disease and some other conditions. So I'm embedded in both medical and neurosurgery teams, here. And I support these teams in both some of the common, day-to-day, issues that come up in practicing neurology or neurosurgery, but also some surgery specific questions that come up when people are making difficult decisions about neurosurgery.

Alex Rae-Grant, MD:  Maybe let's start with some of the more typical ethical issues that come across your transom here. What kinds of typical things do you end up working on in these groups?

Lauren Sankary, JD:  Sure. So on the medical side, a more common issue that comes up of neurology is when a neurologist is asked by a patient or their family member not to document some aspect of a patient's diagnosis. So sometimes they're faced with difficult challenges if a patient is concerned about being able to continue to drive and might ask their neurologist not to document a diagnosis of epilepsy. Providers have to weigh some of the costs and risks as well as the benefits of being transparent in documentation about diagnosis.

Alex Rae-Grant, MD:  Any other more common things that come up in ethics practice?

Lauren Sankary, JD:  So other common challenges that come up arise when a therapy carries significant risks, but also might offer benefit to a patient. And so if a clinician is trying to think through whether or not to offer, let's say a neurosurgical resection in the context of epilepsy, and there are cognitive risks to the surgery, but also this is a surgery that may help a patient become seizure free or dramatically reduce the number of seizure they're experiencing. I've supported patients in thinking through whether that surgery is right to them. And even before it's offered, I've supported clinicians in making the really tough decision about whether it's consistent with our values as a center and with their values as clinicians to offer the surgery in the first place.

Alex Rae-Grant, MD:  So one of the areas that you get involved is the particular neurosurgery called neuromodulation. Can you tell us a little bit more about how you get involved in that and what, in fact, patient population we're talking about with neuromodulation?

Lauren Sankary, JD:  Sure. Most commonly, deep brain stimulation is offered to patients with Parkinson’s disease or essential tremor. And often, those decisions about whether a patient is a surgical candidate can become complex if they have some medical comorbidities or psychiatric comorbidities that make people worry about whether it's safe to perform the procedure or whether that patient will be able to put up with some of the burdens of programming for the deep brain stimulation devices. Another consult that's come up is if somebody has some preexisting cognitive impairments or some early stage dementia and the cognitive risks of deep brain stimulation are increased for that patient, then there are times that the group feels it's ethically supportable to offer deep brain stimulation to that patient, but they might worry the patient needs a bit more support in thinking through whether it's right for them.

Alex Rae-Grant, MD:  So let's get a little more granular. Can you walk us through what kind of process you would use in such a consultation? I mean, who would you talk to? What would you say? What would you hear? Just so our audience understands a little more clearly what it is you end up doing in a consultation.

Lauren Sankary, JD: So usually, I attend every patient management conference in which a group of clinicians from any disciplinary backgrounds are discussing whether or not a patient is a good candidate for deep brain stimulation surgery, in this context. So I'm listening in on those discussions and I'll speak up about, sometimes it's a social situation that has some ethical ramifications for a decision about deep brain stimulation. And so I'll provide some guidance in those discussions. And then if it seems like it might be helpful for me to meet directly with the patient, I usually am sitting down with a patient and whoever their loved ones are who they'd like to be involved in those discussions and talking to them about what activities they find the most meaningful, what hopes they have in undergoing surgery, what expectations they have about the therapeutic benefit they might get from surgery. And also discussing whether they understand the risks and whether they appreciate the drawbacks of deciding to undergo a surgery that carries some significant risks.

Alex Rae-Grant, MD:  That's interesting. In medicine, I frequently talk to patients and families about risk and I think I've communicated pretty clearly. And then I ask them to tell me what I said and often what they hear is quite different from what I said. You must experience that, that people maybe don't really realize what they're getting into even though they've been told it. Is that a fair statement?

Lauren Sankary, JD:  Absolutely. And usually once I'm speaking with a patient, they've heard this from multiple clinicians with different backgrounds, who've probably explained in slightly different ways what they're about to undergo. I think one thing I've realized is that people sometimes take a little bit of time and some repetition to really pick up what they need to understand about something as complicated as a neurosurgery and even simpler procedures in medicine. So accepting those limitations, but also focusing in more on whether that patient appreciates what undergoing that procedure might mean in their daily life is what I'm more concerned that they understand.

Alex Rae-Grant, MD:  Very good. Let's change the subject a little bit. So in 2017, you were awarded the three year grant from the NIH Brain Initiative. Can you tell us about that and how that plays into your work with neurosurgery patients?

Lauren Sankary, JD:  Sure. So in my research I have the chance to explore some unique ethical issues that arise as research participants exit from clinical trials of investigational brain implants such as deep brain stimulators, as they're investigated in different indications than Parkinson’s disease. And so I've used qualitative methods to try to learn from the experiences of research participants in early phase research. And this has kind of helped me formulate some recommendations for clinical investigators who are conducting cutting edge neurosurgical research.

Alex Rae-Grant, MD:  I had a little experience hearing about qualitative methodology. Perhaps our audience may not have a lot of experience with it. What kind of things would you study or pull from the patient and family in a qualitative methodology approach.

Lauren Sankary, JD:  So qualitative methods draw from sociology and anthropology. And the methods I've used generally have been semi-structured interviews, where you're asking relatively open-ended questions where there's not a quick yes or no answer, but where you're really letting a patient or their family share about experiences they have and guide the conversation. And this has really helped me understand things about how they, let's say, processed information they heard in an informed consent process for some of this device research. And it's also helped me understand some of the challenges they experienced while being in a research study. So usually, qualitative methods can help us get at answers that are difficult to get by just administering a survey study, where someone can give a response that's on a scale of one to 10.

Alex Rae-Grant, MD:  So let's shift gears a little bit. I know at the Cleveland Clinic it's a very large tertiary care center and we see some unique situations. Can you share some of the kinds of things that you've seen, which are a little more unusual, that were maybe not quite common garden?

Lauren Sankary, JD:  Yeah. I've helped to support patients who have cognitive limitations in nonstandard consent processes, let's say for an innovative or off-label neurosurgical procedure. And supported families in navigating these decisions when there's not a lot of really great data to point them to, to help them understand the risks or benefits of a specific procedure. I've also supported clinicians in navigating decision making when a patient has both a neurological condition, but also a comorbid mental health condition or a functional neurological disorder. And sometimes there is complexity in first communicating about both their organic and functional diagnosis in helping to craft a treatment plan that addresses both of those functional or psychogenic needs as well as some of their needs for biological interventions.

Alex Rae-Grant, MD:  So I think most of our audience is pretty experienced with ethics consults in the inpatient hospital setting, but you're embedded in a couple of the institutes within the neurological institute. And so you really see some of the outpatient world as well. Can you speak to that a bit, some of the ethical things that might come up in the outpatient clinics that you serve?

Lauren Sankary, JD:  Sure. Some of those issues might feel very routine. In the outpatient setting, clinicians tend to still feel pressed for time, but may be supporting patients in making decisions that aren't as urgent as they might be in the inpatient setting. So for instance, neurologists caring for patients with ALS may be trying to support a patient in just accepting a difficult to accept diagnosis, an emotionally complicated diagnosis, but at the same time trying to help patients be aware of decisions they might face in the future.

For instance, decisions about tracheostomy that may arise in the future. And I find that in an outpatient setting, clinicians are trying with limited time, to prioritize the most important discussions that need to be had in an outpatient setting and I feel that some of my work in an outpatient setting can alleviate some of that time pressure. So advanced care planning is a conversation that doesn't fit in into a short outpatient visit. I sometimes have the luxury of a little bit more time to spend with patients to just focus on some of those upcoming decisions that a patient or family might want support with.

Alex Rae-Grant, MD:  Before we close, I think one of the things to maybe share with our listeners is maybe any tips or pointers on when they're across the table from a patient or family and they're feeling ethical issues boiling up. Any approaches they might take in their practice that might help out with that situation?

Lauren Sankary, JD:  One important thing to keep in mind is that often we're working with relatively imperfect information when we're communicating in a healthcare setting. And I think that sometimes it can actually take pressure off in communication that's difficult to just acknowledge we don't have perfect knowledge about what treatment might be best for any individual patient. I also think it can be helpful for those of us who work in healthcare to think about some of the assumptions we bring to our practices.

I think that I've observed, just in interacting with patients, that I have biases myself in terms of wanting as much information as possible in order to make decisions. Where I've met patients who have told me that getting a lot of information can be incredibly stressful for them and it can be really helpful to get clear guidance from their clinicians. So that was an assumption that I brought to my work in healthcare that I really learned to check and so I think it can be really helpful just to think carefully about what biases or assumptions we might carry, not in a harmful way or in an explicitly negative way, but that might inform the way that we interact with patients on a day-to-day basis.

Alex Rae-Grant, MD: And certainly, it seems as if different patients and families have different ways of thinking through decision making and it becomes quite personalized, doesn't it?

Lauren Sankary, JD:  It does. And I think it can be incredibly helpful to directly ask patients, "How do you normally make important decisions in your life? Who do you usually talk to when you're thinking through difficult decisions or thinking about your health and treatments that might be right for you?" So I'd encourage clinicians to ask that directly and ask patients how they'd best like to receive information so that we can personalize care in that way.

Alex Rae-Grant, MD:  Well, good. Is there anything else that you'd want to share with our audience about the role of bioethics in neurosciences? Anything else that we should tell them?

Lauren Sankary, JD:  I think it's a relatively new field and that ethics expertise can help you think through different options that you have or different courses of action that you can take. And think through, carefully, what consequences accrue with each different course of action that you have. So I think it can help us think carefully about some of what we do in healthcare and in a research setting as well.

Alex Rae-Grant, MD:  Well very good. Well, Lauren, thank you so much for joining us today. It's been a very illuminating conversation.

Lauren Sankary, JD:  Thank you.

Alex Rae-Grant, MD:  This concludes this episode of Neuro Pathways. You can find additional podcast episodes on our website, clevelandclinic.org/neuropodcast or subscribe to the podcasts on iTunes, Google Play, Spotify, SoundCloud or wherever you get your podcasts. And don't forget, you can access real time updates from experts in Cleveland Clinic's Neurological Institute on our Consult QD website, that's consultqd.clevelandclinic.org/neuro or follow us on Twitter, @CleClinicMD, all one word, that's @ C-L-E-Clinic M-D on Twitter. Thank you for listening. Please join us again soon.