Ethical Dilemmas for the Internist with Jeffrey Pannekoek, PhD

Podcast Transcript

Dr Brateanu: 

Welcome to the Medicine Grand Rounders Podcast, a platform dedicated to exploring key topics in internal medicine. Highly relevant to the medical community. This podcast is made possible through the generous support of a grant from the Cleveland Clinic Education Institute. However, the views and opinions expressed here are those of the speakers and do not necessarily reflect the official position of the Cleveland Clinic. Each episode brings together world-class experts and distinguished physicians from Cleveland Clinic to share their knowledge, experience and perspectives on issues that impact healthcare professionals and patient care. Our discussions aim to promote learning, advance professional development and inspire meaningful conversations with the medical community. Today's episode is hosted by Dr. Nitu Kataria, Internal Medicine Physician at the Cleveland Clinic, and me, Dr. Andrei Brateanu also in Internal medicine. We invite you to join us as we delve into today's thought-provoking topic.

Shwetha:

Hi, everyone; my name is Shwetha Bindhu. I’m a fourth-year medical student at Case Western Reserve School of Medicine, and today I’m joined by Dr. Jeffrey Pannekoek, one of our clinical ethicists at the CCF Center for Bioethics, to discuss key ethical principles in clinical decision-making. Thank you for joining us!

Dr. Pannekoek:

Thank you for having me! So, I’ll briefly introduce myself. I’m a clinical ethicist here at Cleveland Clinic. I serve on the ethics consultation service and I’m also a transplant ethicist. In that role, I support our kidney, liver and intestinal transplant teams. I also sit on the donor council and often work closely with LifeBanc and other transplantation connected services. And I work with our Case Western students on the clinical ethics rotation along some of my other projects. 

Shwetha:

Wonderful! So, for today’s podcast, we’ll walk through a few clinical cases with a pressing ethical dilemma in each of them and discuss how we can address the situation using bioethics principles. 

For our first case, we have a 60-year-old male with a medical history of terminal lung cancer and COPD who is admitted for an adverse reaction to chemotherapy. During his admission, his clinical condition decompensates. He becomes minimally responsive with concern for multiorgan failure. The medical team is concerned that further treatment would be futile and wants to initiate a goals of care conversation to change his code status from full code to DNRCC and transition to hospice care. He has no living spouse, and his adult daughters have been minimally involved in his care. His siblings live out of the state and phone in regularly for updates. So, when initiating a conversation about code status, what should be considered?

Dr. Pannekoek:

Yeah, this is a really interesting case. Typically, when it comes to goals of care and changing code status, we would want to consider the patient’s wishes in so far as we know them. Ideally, they would be able to tell us directly or otherwise have documentation in their health care power of attorney document or perhaps a living will that would indicate their preferences. But in this case, the patient is not responsive and cannot tell us themselves what they want for their care and assuming they don’t have a living will, which would apply in this case because they’re incapacitated and terminally ill, we would need to rely on an authorized representative. So, this is either a guardian, a healthcare power of attorney, or someone designated in the surrogate decision-making hierarchy. This hierarchy starts with a legal spouse, then adult children, parents, adult siblings, and then anyone related by blood or adoption. And if we have a group of people who are authorized representative, such as multiple adult children then they have to work together, and we would ultimately go with the majority. So the authorized representative ought to use substitute judgment to the greatest degree possible. And this refers to acting according to what the patient would have decided if they had been able to decide. And so, this is based on what is known about them from previous expressions and that can be to family, to friends, acquaintances or even healthcare professionals. It does happen that we just don’t have good access to the person’s preferences either because they haven’t had those conversations or because there’s nobody available to share them. And in those cases, we decide by the best interest standard. So that is acting based on that is medically most appropriate for them. This patient has designated his mother as his health care power of attorney. And so, she is the authorized representative for this patient. But of course, complications can still arise and if the decisions of the POA ar in conflict with what the other members of the family want for their loved one. 

Shwetha:

Well, that’s exactly what happens in this case. During the goals of care conversation, the patient’s mom and siblings expressed that they felt the patient would want to change his code status and pursue hospice care. However, the children, who had periods of estrangement with their father, say that their dad had spoken to them last week before he became unresponsive, and during that conversation, he said he wanted everything to be done. 

The medical team is unable to weigh in on either preference; the patient had documented full code status when he was admitted, but there is no documentation on if he indicated further wishes.

Dr. Pannekoek:

This is a difficult situation because not only are we facing a difference of opinion, it’s a significant difference and it’s an end-of-life situation, at least potentially. And all parties claim to represent the patient’s own wishes.  So, legally the POA’s decision is what we would follow since the patient appointed his mom when he still had capacity, even if she is lower on the surrogate decision-making hierarchy, that we would otherwise default to.

From ethics perspective, we expect that people trust their appointed POAs to represent them in decision making and we would support the medical team in honoring that decision, unless there is convincing, countervailing evidence or a POAs decision violates what we take to be standards of good medicine. So, in this case, the mom has been very involved her son’s care, and the siblings, who are supporting the POA’s decision, also are in agreement. Additionally, the medical team has established that further care would be futile since the patient is in multiorgan failure and suggesting prioritizing comfort rather than proceeding with more invasive measures that do not offer therapeutic benefit. So, the POA’s decision seems to be medically appropriate. But because this is an end-of-life case, if the children felt strongly that this is a violation of their dad’s wishes, they have, as individuals who are represented on the hierarchy, to write to contest the decision in probate court, but that’s quite rare. 

Shwetha:

So, in summary, when patient wishes are unclear at end-of-life decision making, we can look for a living will or POA. And if these aren’t available, we can follow the surrogate hierarchy, which starts with the spouse and goes to children, parents, and siblings. So, ideally, we are following the substituted judgment standard that reflects patient values and wishes, but if needed, we can defer to the best interest standard for medically appropriate care.

Dr. Pannekoek:

That’s right. 

Shwetha: 

For our next case, we have a 50-year-old woman with paranoid schizophrenia and Stage 1 breast cancer, currently untreated, and COPD who is admitted for management of shortness of breath, found to have heart failure. She lives in a group home and has a court appointed guardian who makes medical and financial decisions on her behalf.

She's relatively high functioning and is very compliant with her COPD medications. However, she is mistrustful of the medical system, and it is only through gradual relationship building efforts by the medical and nursing team that she takes her heart failure medications. Her guardian is usually contacted only for consent to procedures and treatments. The patient was diagnosed with breast cancer 2 years ago but has refused treatment because the symptoms do not bother her. 

During the admission, the admitting doctor consults both the surgical oncology and medical oncology teams for further evaluation of her cancer. The surgeon would like to proceed with a radical mastectomy, while the medical oncologist is more ambivalent and is concerned that she would need additional radiation and chemotherapy. Her cardiologist is also concerned that the mastectomy would exacerbate her heart failure symptoms.

After a psychiatry evaluation, the patient is found to be high functioning, but the psychiatrist is concerned that proceeding with a mastectomy would cause severe decompensation of her mental health status and lead to profound body dysmorphia. The medical team is weighing the options on what to do next.

Dr. Pannekoek:

Okay great case. And I think there’s a couple of things to discuss here from the ethics perspective. So first, while a guardian can be a family member or a loved one, in this case, it sounds like there’s a court appointed guardian who’s not related to the person for whom they are making decisions. Guardianship is the results of a legal judgement that a person cannot make decisions in terms of managing their own affairs. So this is about competency. It’s a very serious consideration as it constrains a lot of the person’s autonomy. It can be conditional or temporary, or as in this case, it can be permanent. And a guardian can only act within the confines of what the court appoints them to, but this can be quite broad. 

Competence is notably different from capacity. Capacity is something we see maybe more frequently in a medical setting, which requires the ability to communicate a choice, understanding of the relevant decision, appreciation of the impact of the choice on one’s life and the ability to reason about alternatives. So, capacity can be fluctuating. It is time and decision specific. And so, a patient might have capacity to make decision that involving a certain scope, for instance, designating a health care power of attorney, or deciding against a blood transfusion, but may be unable to but be unable at the same time to make more abstract choices, for instance about a complicated discharge plan or goals of care. It is something that can be reevaluated multiple times during an admission and a psychiatric condition does not necessarily undermine a person’s decision-making capacity.  So, the court may have declared this patient legally incompetent, but they may still retain a certain level of capacity for medical decisions. 

So, she can be evaluated for capacity to make decisions regarding her cancer treatment or other relevant decisions for this admission. And it seems like the other topic to consider is the principles of bioethics, are autonomy, beneficence, non-maleficence and justice. 

Shwetha:

And it seems like the other topic to consider is the principles of bioethics, are autonomy, beneficence, non-maleficence and justice. In this case, autonomy and beneficence are very relevant. The patient has a significant lack of autonomy given the fact that she has a guardian who is making decisions on her behalf. However, even guardians are often instructed to act according to the substituted judgment principles that we have discussed earlier, which helps preserve some autonomy on behalf of the patient. If this patient had previously expressed a desire to not treat her cancer before her guardianship was established, that is an important detail to consider as well. 

This has been seen in cases where patients with severe and progressive dementia, whose appointed guardian may be a child or close friend. Their decision making, especially regarding tough decisions such as withdrawal of care, is often informed by the previously expressed wishes of their parents or friends.

Dr. Pannekoek:

Yeah, I think the point of balancing beneficence and autonomy is very relevant in this care. And for this patient different health care professionals have different concerns on whether this cancer can be safely treated or whether it will require extensive post-surgical monitoring or even additional interventions. And so, if they decide that a surgery is in her best interest, that may go against the patient's preferences. So violating the patient’s expressed preferences in this case can be perceived. We can frame that as a violation of our autonomy. 

Patients who have capacity and who are legally competent are allowed to decline care or make decisions that may have negative consequences on their health or pose other risks. And so we see people who will refuse blood transfusions, even lifesaving ones, because of adherence to religious principles, and they are and ought to be permitted to do so. In this case, claims to beneficence of what the medical team takes to be in the medical best interest of the patient must always be balanced with what the patient wants for themselves with autonomy. 

As we discussed earlier, neither a psychiatric diagnosis nor a judgment of incompetence by a court are sufficient to declare a patient incapacitated for specific medical decisions. When a person is having an episode of paranoia their decision-making ability may be acutely affected. What we see is in other cases as well, such as in delirium. And even those cases, patients are still participants in their care. We cannot always reasonably or safely override incapacitated preferences, even if we think this would ultimately benefit the patient. 

In this case a multidisciplinary meeting that brings together the various specialties and other consulting caregivers may be beneficial in developing an ethically supportable plan of care, and determining which medical treatments, if any, would be beneficial for this patient and how this can be contextualized in her psychiatric condition and guardianship status, as well as her personal preferences in refusing care.

Shwetha:

So, in summary in this case, when evaluating decision-making ability in a patient, as medical professionals we are evaluating their capacity, which has four parts. This is something that can change and should be reevaluated throughout an admission. Competence, on the other hand, is declared by the courts and is a separate process. A patient who has a guardian has a noticeable lack of autonomy which needs to be addressed with caution. As much as we can, we should balance medical decision making with what their previously stated wishes were, which is the substituted judgement principle. 

Thank you so much for joining me on this podcast episode! Today we discussed two clinical cases and some important ethics principles, including capacity, autonomy, and surrogate decision making. Please tune in for the next podcast episode for more interesting cases and clinical pearls!

Dr Pannekoek:

Thank you for having me!

Dr. Kataria:

To our listeners, thank you for joining us on this deep dive into this important topic. We hope you found this episode both educational and engaging. On behalf of the team, thank you to our special guests who joined us today. Thank you also to the Cleveland Clinic Education Institute for the educational support of this project. Until next time, please enjoy this and future podcasts from the Cleveland Clinic Medicine Grand Rounders.