Time Stamps

  • 03:02 Ethical and emotional challenges
  • 10:08 Case 1
  • 18:55 Study of the 7 Questions
  • 22:46 Conclusion 

CME-MOC

Show Notes

  1. Ethical and emotional challenges of treatment over objection
    1. Autonomy
    2. Beneficence
    3. Non-maleficence
    4. Paternalism
    5. Dignity
  2. 7 Question Framework
    1. What is the likely severity of harm without intervention?
    2. How imminent is harm without intervention?
    3. What is the efficacy of the proposed intervention? 
    4. What are the risks of the intervention?
    5. What is the likely emotional effect of a coerced intervention on the patient?
    6. What is the patient’s reason for refusal?
    7. What are the logistics of treating over objection?
  3. Study of the 7 questions
    1. Retrospective analysis of 35 consecutive ethics consultations at Columbia University Medical Center
    2. A recommendation to proceed with treatment over objection was made in 63% of  cases 
    3. Two questions were found  to be significantly  associated with the final ethics recommendation:
      1. Imminence of harm was found to have a likelihood ratio of 5.57 (p = 0.045), suggesting that when harm is imminent, the ethics consultant was more likely to recommend proceeding with treatment over objection
      2. Logistical issues had a likelihood ratio of 0.01 (p = 0.002), suggesting that when there are many logistical issues, the ethics consultant was less likely to recommend proceeding with treatment over objection. 
    4. While these two questions had the most weight, the authors stress that it is still important to consider all seven questions for each patient.

Transcript

Margot: She was lethargic but recoiled every time she was touched, pulling away from the nurses, pushing the BiPAP mask off her face. She was in florid kidney failure: her lungs were full of fluid, and her potassium so high it could stop her heart – but the delirium we wanted to fix with dialysis was making her fight everything we were doing to save her. The son stood at her bedside, shaken but resolute. “Please,” he said. “You’ve got to bring her back.”

This was my first case of treatment over objection. I wish I could say these cases get easier with time, but there’s nothing easy about forcing a patient to do something against their will. If a patient lacks decisional capacity – if they can’t understand the intervention being offered, appreciate the consequences, reason through risks and benefits, and communicate a choice – then we have to make hard decisions about what to do if the patient says no. Welcome back to At the Bedside – I’m Margot

Tamar: I’m Tamar

Jafar: and I’m Jafar

Margot: Our goal today is to help you navigate cases of treatment over objection, and our guest is Dr Kenneth Prager.

Dr. Prager: I’m a pulmonologist and I’m director of clinical ethics and chairman of the medical ethics committee at Columbia University Medical Center. I’ve been doing ethics consultations for nearly 30 years since our ethics program began actually. And one thing that appeared quite clear to me was the paucity of any literature dealing with the ethical dilemma of when is it ethical to treat somebody lacking capacity against their wishes?

The literature is replete with articles on psychiatric treatment over objection. But if you Google this subject, you’ll find hardly anything on the medical treatment. And also the law is quite detailed from state to state in the parameters of treating patients with psychiatric illnesses over objection. Whereas the law is less clear – if it addresses it at all – in terms of treating patients with medical issues over objection.

Margot: Since there wasn’t a clear framework, he developed one.

Dr. Prager: I just elaborated a series of questions that I asked myself in writing and ethics note and in deciding whether to recommend a treatment or whether to not recommend treatment.

Margot: Today, we’re going to dive into the 7 questions Dr. Prager asks when he’s weighing the risks and benefits of treating a patient over their objection. Then we’ll dive into a recently published study where they looked at how those questions shaped the final recommendations of ethics consults. But first, I’ll turn it over to Jafar to describe the ethical and emotional challenges that these cases bring up.

Ethical and emotional challenges

Jafar: So why are these cases of treatment over objection so challenging? Well, in part it’s because it so many of our fundamental ethical principles are at stake:

Dr. Prager: There are definitely ethical challenges because you have over here, a confrontation between two major ethical principles in bioethics. The principle of autonomy – patient autonomy – adult patients, have a right to decide what should or should not be done to them and just because a patient is felt to lack capacity does not mean that they forfeit their rights as a human being to say, I don’t want this done to me. They are not stones. They don’t become three-year-old children. They are adults, they have civil rights. So you still have the principle of autonomy, although it is modified in a situation like that. And then of course you have the principle of beneficence, of physicians who want to help the patient and they don’t feel right standing by while  bad things will happen to this patient unnecessarily because the patient isn’t capable of understanding the gravity of their illness and the potential benefit of the treatment. There is also the principle of non-maleficence: “first do no harm.” And in trying to help a patient, in forcing a patient, we may be inflicting physical and emotional harm as well, even though our goal may be very clear that we wish to alleviate this patient’s illness or cure them of their illness. So you have a very classical standoff between fundamental principles in medical ethics: autonomy versus beneficence, and versus non-maleficence. Which one trumps? That is the dilemma of each of these cases. And who decides?

Jafar: Another issue to consider in this tension between beneficence and autonomy is our tolerance for paternalism. Historically speaking, physicians were overly paternalistic in a way that doesn’t fit with our modern understanding of patient autonomy and shared decision making.  So whenever these conflicts between beneficence and autonomy come up, it seems like autonomy is given a default preference, almost as a reaction to past abuses. But is this always the right approach?

Dr. Prager: Now paternalism has become a dirty word. I don’t think paternalism is necessarily a dirty word. I think obviously it’s all contextual. When people come to us, they come to us for our paternalistic advice. They are not experts in this. When I go to my car mechanic, I want them to be paternalistic and tell me what needs to be done to fix my car. The issue of paternalism, however, as you say, the pendulum has swung. Up until the 1950s and early 1960s paternalism was carried to a degree that we would consider very excessive today. For example, it was considered appropriate for a physician not to tell a patient that they had the diagnosis of cancer if the doctor felt that that might harm the patient emotionally. And that was accepted – that was considered standard normative practice up until the 1960s and patients were okay with that, families were okay with that.

But then you have the 1960s when rights exploded, civil rights, women’s rights, et cetera, and patients’ rights also came into being. They wanted doctors to be open, et cetera. Now, can this be excessive? Sure. The notion of approaching a patient today with a menu of things, well, what would you like your, your choices and so forth? I mean, I’m exaggerating, but sometimes this happens. I think that’s wrong. I think physicians have the duty to be paternalistic with a small P and to recommend, to make a recommendation. I, although I think you have these three choices, I would recommend choice. Number one, for the following reasons, a patient then has the right to say, thank you, but no, thank you. Or thank you, I really value your advice. 

Jafar:  Ok, so some paternalism is just part of our job, but treatment over objection is about as paternalistic as it gets. Our goal is to do the right thing for the patient, and even though they’re losing the dignity of choice, we don’t forget about their dignity altogether.

Dr. Prager: Just because it is clear to everybody that a patient lacks capacity, a hundred percent, everybody agrees that person is still a human being. They have rights, they have dignity. And to override a patient’s wishes and violate their autonomy and dignity by forcing them into something is not something that we should ever take lightly. It’s so easy to violate the person’s dignity. We have people coming in, in the worst possible undignified conditions disheveled lashing out at people. This is still a human being who is created in the image of God, just like you and me, let’s get that straight.

Jafar: Part of the challenge is just the reality of being an overworked clinician, caring for many patients, while also taking trying to take care of one patient that seems to be getting in their own way.

Dr. Prager: It takes much more time to deal with the issue of treating over objection than it does to just steamroll over the patient. This is obviously what the patient needs. They don’t know what they’re talking about. Let’s just go. It’s so much easier to justify to yourself — this is the right thing to do.

Jafar:  And just pushing through may feel like the easier way out, but there are a lot of hidden costs in that approach. The truth is that these are really morally distressing situations, and ignoring that can be hazardous not only for the patient’s dignity, but also for our own.

Dr. Prager: Young doctors, especially–it’s such an emotionally stressful thing to start off as an internship and your residency, you don’t have the time and so all of these lofty principles are really nice for me to say, as I sit here in my air conditioned office, you know, with the fan blowing on me and I’m having just had a nice breakfast and so on. But I remember what it was like being an intern in 1968. I remember being sleep deprived, feeling I wasn’t getting enough support. Like, oh my God, this person’s life is in my hands and I’m not sure I’m doing the right thing. And so it’s easy in that situation to lose sight of the important ethical principle of human dignity. And that’s why you need older people. You need some old guys like me to say, well, step back a minute, hold it. We don’t just stick this patient for the 20th time in order to get their blood and so forth, and they’re protesting. Is this really necessary? This has to be repeated, repeated, repeated, if we are to be humane physicians, absolutely.

No doctor enjoys forcing treatment upon a patient. We are human beings. We’re nice people. We went into this job to help people and not to restrain them and force them and have them object. Um, we want people who understand the reason, the rationale for our interventions. And so there’s a great deal of emotional distress in almost every case of treating a patient against their wishes.

Jafar: We hope that going through this episode will help ease some of that emotional distress by better understanding some of the ethical issues at stake, and how to approach them. And so with that, we’ll spend the rest of this episode breaking down the framework Dr. Prager developed.

Case 1

Margot: We’ll be going through Dr Prager’s 7 questions through the lens of the case I described at the beginning: a 75 year-old woman who was refusing emergent dialysis for renal failure, but lacked capacity to make that decision. Her past medical history was notable for chronic kidney disease; she had been lost to follow-up about a year before I met her, after her nephrologist had introduced the idea of dialysis.

Dr Prager’s first two questions go hand-in-hand. First, what is the likely severity of harm without intervention? And second, how imminent is harm without intervention?

Dr. Prager: The imminence of harm here seems to be quite imminent. The patient is hyperkalemic, patient has a fluid overload necessitating Bi-PAP. So this is an emergency kind of situation. And the severity of harm, if the patient is not dialyzed could be death, easily, from untreated hyperkalemia, from pulmonary edema, I don’t know if the patient has other comorbidities, but this is a, obviously a life-threatening situation. So I would say the harm is imminent and the severity is great.

Margot: Third, what is the efficacy of the proposed intervention? Fourth, what are the risks of the intervention?

Dr. Prager: The treatment that we’re proposing over here is dialysis and all things being equal, as we know, the efficacy is great. We save lives all the time in people like this to be able to draw fluid off, to have there, to get them into metabolic array from metabolic disarray. So the efficacy is great. What is the risk of the treatment over here? The side effects might be significant if the patient is violent, for example, and we have to sedate the patient well, that throws a monkey wrench into our assessment.

And so if you have a tenuous patient that is very agitated and you have no safe way of getting access to this patient and the patient won’t lie still for the duration of dialysis and you have to sedate the patient, that has to be in the equation of the potential risks of the treatment. It’s a very effective treatment, but in order to have it occur safely, we may expose the patient to great risk. And that’s something, obviously that’s going to have to be discussed with family. That’s going to have to be considered among the physicians.

Margot: The fifth question is, “What is the likely emotional effect of a coerced intervention on the patient?” 

Dr. Prager: Now, this is something I think we have to consider, but frankly, I think it’s the most difficult one to be sure of. How do we know how a patient is going to react to having been forced into a procedure when the procedure is over? We really just don’t know.

We can perhaps try to invoke their past behavior, speak to their relatives and so forth. Now, what would be the effect on this patient if she were sedated successfully and taken for dialysis? I don’t know. Do I know why this patient did not want to have dialysis in the past?

Had this patient said repeatedly, “I never want to be dialyzed”, would the patient be angry and upset with the physicians and the family for allowing this to occur? It obviously would depend on what the patient’s feelings were in the past, whether they had ever expressed themselves about it, et cetera.

Margot: While it can be helpful to understand the patient’s past preferences, we can’t necessarily lean on them too heavily. Like we’ve discussed in past episodes, people’s preferences can change:

Dr. Prager: Patients may have said previously, “I never want X, Y, and Z. I never want dialysis”. And then when the moment of truth comes and they’re facing death without it, patients change their minds. Patients change their minds. As I often say, when patients face the angel of death face-to-face, usually the patient blinks first.

Margot: So while past preferences can be helpful as we try to figure out how treatment over objection will impact the patient, they’re not the be-all end-all. The sixth question asks about the patient’s current preferences: “What is the patient’s reason for refusal?”

Dr. Prager: And then we have the reason for refusal, which can be very, very important. I mean, if the reason that this patient was lost the follow-up is  because the patient has felt very clearly “I never want to be dialyzed, I’d rather die than that. I know what I’m talking about. Don’t you ever dare force me. I’ve lived my life. I’m 75 years old, and I know friends who have had it. This is not for me”. That’s one thing, but what if the patient’s reason for refusal is, “Well, I don’t think I need it. I think your doctors are just doing it for the money and besides, I don’t know what you put in that fluid that goes into me, who knows you may be poisoning me, or maybe there’s a chip that you put in there.” That’s a whole different reason for refusal obviously. It may not be treatable, but I think it helps me as a physician to know whether it’s justified to override that patient’s wishes.

Margot: We’ve come to the final question: “What are the logistics of treating over objection?

Dr. Prager: The logistics here, it comes back to the issue of sedation. If the patient is calm enough to allow us to get access and to put them on dialysis and to have them lie quietly, then it does not become a logistical problem. If the patient is actively agitated, pulling out their lines and so on, screaming and becoming violent, it’s a huge problem. And the logistics – sometimes the logistics are absolute. For example, since you’re talking about dialysis, just speaking in general, this is the case that I use as the greatest example of when logistics trumps everything else. If you have a patient with chronic kidney disease, who is refusing dialysis, who lacks capacity, you cannot continue dialysis on a chronic nature. You just can’t do it, because we can’t imprison the patient, sedate them, put them on a gurney three times a week and dialyze them – end of issue. So unless you get cooperation from the patient in the chronic situation, dialysis is off the table and that patient will die of a potentially treatable disease. So logistics is very, very critical. 

If it’s a question of sedating a patient, a one-time only – for example, a patient who may be refusing a needed laparotomy for a ruptured viscus and there’s air under the diaphragm, and we need to just knock them out to take them to the OR and all things being equal they are salvageable with a laparotomy – then the logistics over there are doable. You can sedate them, take them to the OR, and it does not become a continuing problem.

Margot: After considering each question one-by-one, it’s time to step back and think about the case as a whole.

Dr. Prager: And so, in a situation like this, the patient now has uremic encephalopathy. I can see a good case being made for overriding this patient’s wishes. If sedating her is not a prohibitive medical risk, dialyzing her against her wishes, trying to restore her cognition and her capacity and saying, “Mrs. so-and-so Mrs. Jones, your kidneys now have reached the point where without dialysis your life expectancy is a matter of days or weeks. You have the right to say yes or no, but we want to make sure that you understand what lies in front of you. We will respect your wishes, and excuse us for having subjected you to the dialysis. But since this is a matter of life and death, and since your family wants you around some more, we felt that we owed it even to you, certainly to them, to give you an opportunity to readdress the question of whether you are absolutely opposed to dialysis at the risk of death in the near future.” So, I think here, we’re talking here about, maybe one or two dialysis sessions to try to fix this woman’s metabolic disarray, and then pose the question to her and then see what she wants to do.

Margot: That’s what ended up happening for this patient. She was given a small amount of medication to sedate her so that a line could be placed. After her first session of dialysis she no longer needed BiPAP, but was still confused and lethargic from her uremic encephalopathy. During the second session, her mental status improved enough for her to sit up and look at her son. “Let me die,” she said. The dialysis was stopped, the line was removed, and she was discharged home with hospice.

At the time I was a med student, and I remember wondering whether we should have just let her refuse dialysis from the beginning. But the more time I’ve spent with surrogate decision-makers, the more I’ve realized how important it is for patients to tell us what they want, whenever possible.

Dr. Prager: That’s critically important for the family as well. The family has to know, cause if they did not know that they might live with themselves that “well, what if we had only she’d be alive today,” et cetera, et cetera. So whenever we can give a patient an opportunity to express their advanced directives clearly to their loved ones, that is very important.

Study of the 7 questions 

Tamar: As the case Margot just walked us through shows, these types of situations are really tough to navigate and these 7 questions can be a very helpful way to work through them. And Dr. Prager and his colleagues also put this framework to the test on a larger scale. They did a retrospective analysis of 35 consecutive ethics consultations at their institution where the 7 questions were applied. Interestingly, there was a recommendation to proceed with treatment over objection in 63% of these cases. But they found that not all seven questions carried the same weight. 

Dr. Prager: We wanted to tease out and see which of these questions seem to have the most impact on whether to proceed and treat the patient over objection. And so we did an analysis and we found that the two questions which seem to have the most impact, on whether to treat over objections were number one, whether it was logistically possible to treat over objection. And that kind of makes common sense because if you can’t do it logistically, I gave you the example before of chronic dialysis, which is impossible over objection. So unless it was logistically possible to treat the patient, that patient would not be treated over objection. So that’s kind of a no brainer, if you will. The other question that seemed to have the most relevance and here again, it’s somewhat, I think common sensical, that is the imminence of harm. 

Tamar: So those two questions made the biggest impact on clinicians’ final decisions, but Dr. Prager points out that the remainder of the seven questions are still important.

Dr. Prager: Clearly if we felt that it was logistically possible to treat the patient, and there was imminent, severe harm, but the efficacy was minimal and the side effects were great, we would obviously not treat that patient over objection. So those other questions are clearly very, very, relevant. But in terms of a statistical analysis, it was those first two that came out on top. That should not obviate the need in my opinion, of going through the checklist one by one.

Tamar: Dr. Prager called particular attention to the importance of considering efficacy of intervention and risks of treating over objection.

Dr. Prager: It stands to reason you don’t have as much or any ethical right to force somebody into a treatment, which has, let’s say a 50% chance of working and has major side effects. I use the example of chemotherapy, let’s say for a stage four lung cancer, in a smoker who doesn’t have a targetable mutation. You’re talking about certainly not curative therapy, may be able to extend the life of the patient for a year, 16 months and so forth, major side effects. How can you possibly justify forcing the patient – also repeatedly – into treatment? 

Undertaking an operation in a high risk patient, where the risks of the surgery are very substantial. You have a 20% chance of pulling through. And the patient says, no. I don’t see how you could possibly justify forcing a patient to undergo that intervention. In a clinical scenario where a significant number of people with capacity would say, “Not for me”, I don’t see how you could possibly ethically justify forcing a patient.

Tamar: And the bottom line, even when we have this framework to guide us through these difficult situations, is that we should never take treatment over objection lightly.

Dr. Prager: I think the threshold for forcing somebody has to be very high. It has to be high because of the ethical issues that we spoke about at the very beginning. You’re violating somebody’s civil rights. You’re subjecting them to an unwanted intervention. You have to have a pretty high threshold for justifying that. And hopefully these questions help you to set that threshold.

Conclusion

Margot: Thanks so much for listening in. In this episode, we talked about the ethical principles that come up in cases of treatment over objection, and walked through a 7 question framework to help you think about how to weigh the risks and benefits. And we grappled with a question that’s always haunted me: how do you maintain the patient’s dignity through this process?

Dr. Prager: I can only say treating the patient with understanding, compassion, empathy, trying to just be as humane as possible, trying to explain to them, spending the time – I come back to the issue of time. I really think that the biggest obstacle to being able to do it is, is the fact that everybody is so rushed. It’s not a quick fix. It’s a question of just knowing how to talk to patients. There’s an art in that.

Margot: We tackled a lot, but there are some big questions we didn’t have a chance to get to. What are some of the logistical issues that come up, and how should we address them? What role do surrogate decision-makers play in these conversations? And how can we start to heal from the moral distress these cases bring up? We’ll discuss these questions and more in our next episode of At the Bedside.

Jafar: Thanks for tuning in!  We know these topics can stir up more questions than answers, and we look forward to hearing more about your experiences with treatment over objection. Please continue the conversation with us online at our facebook page, on twitter, or email us directly. Find show notes and contact information for us on our website: coreimpodcast.com

If you enjoyed listening to our show, and you’d like to provide podcast recommendation over objection, please give us a review on itunes or whichever podcast app you use; it helps other people find us.  We work really hard on these podcasts so we’d love to hear from you.  Let us know what we are doing right and how we can improve.  And as always opinions expressed in this podcast are our own and do not represent the opinions of any affiliated institutions. 

Finally, special thanks to all our collaborators on this episode, our wonderful audio editor Daksh Bhatia, our illustrator Michael Shen, endless technical support from Harit Shah, moral and executive support from Shreya Trivedi, and most importantly thanks to you, our listeners!

References

 

 

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