Capacity evaluation for Covid Deniers?

[WisNeuro]

I get what you're saying, but my point was that once the sticking point becomes whether or not someone's process of reasoning is sufficiently impaired as to represent a departure from rationality, if the underlying cause of this departure is not related to any kind of health condition, it is still not at all clear to me why physicians can claim a special expertise.

I hear what y'all are saying about physicians having the medical knowledge, but if we are going to say it is possible to give a layperson adequate enough information about risks and benefits to be permitted to make a meaningful decision, it has to be possible to give a third party enough factual information to be equipped to make the determination of rationality.

Fairly variable across the board. At three of the hospitals I've been at, capacity consults all went to psychology/neuropsychology care lines, one hospital had a psych np who did a ton, and another was a bit of a free for all. Regardless of the provider doing the eval, the first step in the process is always talking to the treatment team to discuss what the decision(s) in question are, go through risks/benefits, etc. In my experience, most of time the issue is with lack of clear communication between the team and the patient. Or they approached the patient with jargon and things that made no sense to the patient, who is generally scared, and many times distrustful. If the treatment team cannot explain in clear terms for another provider to understand reasonably, that's one of the problems here. You simply have to be able to talk with many patients at a fairly low level of complexity and health literacy, and some providers struggle with that aspect.

---

Members don't see this ad.

 

[Stagg737]

How can you maintain this position without jeopardizing the entire concept that a person can lack capacity? You’re saying that lacking capacity and being unable to demonstrate it are not the same thing. Let’s accept that proposition as true for the sake of argument. How are you going to distinguish them? How do you know that all of the people you have opined as lacking capacity are not just people with capacity who haven’t been able to demonstrate it?

Because inability to demonstrate capacity is very different from demonstrating a lack of capacity. Those who I determine lack capacity have demonstrated that the do not have capacity through their answers and interactions during the interview. Those who won't participate in the assessment but are able to communicate that they aren't may have capacity, they're just not demonstrating it. Again, failure to demonstrate capacity is NOT equivalent with lacking capacity.

To clarify, if there's collateral information provided (notes, discussions with staff or family, etc) that obviously shows a patient doesn't have it, then I'd say unable to determine capacity based on our interaction, however X, Y, and Z is suggestive/indicates/whatever that patient (likely) lacks capacity. If the patient is bad enough that you're walking in assuming they'll be lacking capacity, the consult probably wasn't necessary in the first place. For legit consults, I walk in as a blank canvas and assume nothing.

 

[Old&InTheWay]

Because inability to demonstrate capacity is very different from demonstrating a lack of capacity. Those who I determine lack capacity have demonstrated that the do not have capacity through their answers and interactions during the interview. Those who won't participate in the assessment but are able to communicate that they aren't may have capacity, they're just not demonstrating it. Again, failure to demonstrate capacity is NOT equivalent with lacking capacity.

To clarify, if there's collateral information provided (notes, discussions with staff or family, etc) that obviously shows a patient doesn't have it, then I'd say unable to determine capacity based on our interaction, however X, Y, and Z is suggestive/indicates/whatever that patient (likely) lacks capacity. If the patient is bad enough that you're walking in assuming they'll be lacking capacity, the consult probably wasn't necessary in the first place. For legit consults, I walk in as a blank canvas and assume nothing.

I think @sloop is making a semantic point that a patient who lacks capacity and a patient who refuses to participate are both "unable to demonstrate capacity." But what I think you are saying is that there are some cases in which you are unsure and are unable to make a determination one way or another at a given point in time. But then again, what is the difference between an apahsic patient and someone who is just refusing to talk to you? Both may have the intellectual capability of making an informed decision but neither have the ability/will to communicate it (which is one of the A&G criteria). I suppose one difference is the likelihood that the ability to communicate could change, so the decision from the team in the case of a non-cooperative patient could be to make no major decisions about treatment, but not to let the patient leave and reassess later.

 

[docksan]

I generally find that patients with capacity respond well to "Answering these questions will help me communicate your needs to the primary team" in many cases.

The law errs on the side of the patient in that they're presumed to have capacity unless they demonstrate otherwise, and while that can prove difficult at times "I don't think this will kill me" is very different from "There is no way I will die from this".

 

[WisNeuro]

I think @sloop is making a semantic point that a patient who lacks capacity and a patient who refuses to participate are both "unable to demonstrate capacity." But what I think you are saying is that there are some cases in which you are unsure and are unable to make a determination one way or another at a given point in time. But then again, what is the difference between an apahsic patient and someone who is just refusing to talk to you? Both may have the intellectual capability of making an informed decision but neither have the ability/will to communicate it (which is one of the A&G criteria). I suppose one difference is the likelihood that the ability to communicate could change, so the decision from the team in the case of a non-cooperative patient could be to make no major decisions about treatment, but not to let the patient leave and reassess later.

I'm not sure I'd use aphasia as an example as an individual who cannot participate. I've evaluated a few handfuls of varying types and severity of aphasia just fine. If it's pretty dense, working with SLP in your setting to facilitate can be helpful. Personally, I've never encountered anyone with a dense enough aphasia that they could not participate in this type of eval in some way with some accommodations.

 

[sloop]

Because inability to demonstrate capacity is very different from demonstrating a lack of capacity. Those who I determine lack capacity have demonstrated that the do not have capacity through their answers and interactions during the interview. Those who won't participate in the assessment but are able to communicate that they aren't may have capacity, they're just not demonstrating it. Again, failure to demonstrate capacity is NOT equivalent with lacking capacity.

To clarify, if there's collateral information provided (notes, discussions with staff or family, etc) that obviously shows a patient doesn't have it, then I'd say unable to determine capacity based on our interaction, however X, Y, and Z is suggestive/indicates/whatever that patient (likely) lacks capacity. If the patient is bad enough that you're walking in assuming they'll be lacking capacity, the consult probably wasn't necessary in the first place. For legit consults, I walk in as a blank canvas and assume nothing.

How exactly is inability to demonstrate capacity very different from lack of capacity?

Do you disagree that capacity is defined by the ability to do some set of things? How exactly do you come to a position that a person lacks capacity other than by establishing that they are unable to do that that set of things that defines capacity?

I do not understand how you are somehow divining that someone is deciding not to participate versus unable to participate. I also contend that it doesn’t matter. I personally think that “I don’t know” is a nonsense answer to this question. Some medical decision needs to be made, and somebody needs to make it. You don’t need to be 100% sure someone has or does not have capacity to assess that they do or don’t have it. This is professional judgment. Saying “I don’t know” is basically saying “I don’t know how to treat my patient. A medical decision needs to be made one way or another. Either the patient makes it, you make it, or a surrogate makes it. Saying “I don’t know who gets to make this decision” is unhelpful. Saying that you’ll consult the ethics board or whatever is fine, and might be the right thing to do, but it doesn’t actually answer the question that somebody needs to answer at some point, and it’s not like they’re applying some novel analysis. It’s the same question. As a practical matter, if you can’t demonstrate capacity l, you don’t have capacity. If someone is going to make a potentially harmful medical decision that the team disagrees with (which in reality is the only time people assess capacity), you cannot let a potentially incapacitated person make that decision even if they might have capacity in a way that you’re unable to discern that they do.

You’re pretending that an emergency situation is a fundamentally different type of analysis to a non-emergency situation. It’s not. In a non-emergency situation, you might have time to figure out who the decision maker is, get a guardian, or whatever, but the capacity determination and it’s consequences are the same. If it’s an emergency situation and you “don’t know” or “can’t tell” if the patient has capacity, do you let them make the decision or just make the decision for them in what you think is in their best interest? You do the latter. Why? Because, fundamentally, it’s unethical to let a possibly incapacitated person make their own medical decision. It’s not because “it’s an emergency.” The “it’s an emergency” part only governs who makes the decision for the patient. It does not modify the fundamental analysis under which we don’t allow “possibly incapacitated” people make a medical decision.

This is why I say that unable to demonstrate capacity and lacking capacity are functionally indistinguishable.

 

[Desired Member]

I get what you're saying, but my point was that once the sticking point becomes whether or not someone's process of reasoning is sufficiently impaired as to represent a departure from rationality, if the underlying cause of this departure is not related to any kind of health condition, it is still not at all clear to me why physicians can claim a special expertise.

I hear what y'all are saying about physicians having the medical knowledge, but if we are going to say it is possible to give a layperson adequate enough information about risks and benefits to be permitted to make a meaningful decision, it has to be possible to give a third party enough factual information to be equipped to make the determination of rationality.

You make a good point. However I don't feel we can equate the ability to evaluate capacity to the ability to demonstrate capacity.
Also would add that the patient may make nuanced incorrect statements that need correcting or ask nuanced questions that a layperson can't answer. So the doctor should be there anyway to advise. I guess since the doctor needs to be there anyway the health care CEO's figure "why pay a third party to do it? Just make the doctor do it"

I'm concerned that I would come to a different conclusion regarding capacity than yourself and Mass Effect for the aforementioned patient, as I respect both of your opinions. I want to know how to do a capacity eval correctly. Like for the narcissistic patient I mentioned above, I would say they lack capacity. The doctors told them that they probably wouldn't survive if they left the hospital AMA. Patient thought they would. One could argue that they don't have an adequate grasp of the severity of their medical condition and lack capacity. I think one needs to have a grasp on prognosis to demonstrate capacity.

Now let me just say that this is difficult when one considers how difficult it could be to force treatment on some patients. For example, a diabetic patient in clinic who refuses to believe they have diabetes so won't take meds. What are you gonna do, call the police to take them to the hospital for forced treatment? Follow them home and sprinkle metformin on their fries?

So I think along the way I must have missed some important aspect of evaluating capacity. I don't understand why people are talking about a change from baseline being important when evaluating capacity. I'm confused! I may not agree with all of sloop's points, but what they are saying sounds more in line with what I've been taught about capacity evals.

 

[Mass Effect]

I'm concerned that I would come to a different conclusion regarding capacity than yourself and Mass Effect for the aforementioned patient, as I respect both of your opinions. I want to know how to do a capacity eval correctly. Like for the narcissistic patient I mentioned above, I would say they lack capacity. The doctors told them that they probably wouldn't survive if they left the hospital AMA. Patient thought they would. One could argue that they don't have an adequate grasp of the severity of their medical condition and lack capacity. I think one needs to have a grasp on prognosis to demonstrate capacity.

Not really. One needs to have a grasp on their medical condition to demonstrate capacity. Prognosis can change, can be wrong, can be different depending on who's giving it. Think of lack of capacity as an impairment. If a doctor says "you will die without staying in the hospital" and the patient says "I don't believe I will", it doesn't necessarily mean the patient's impaired, right? The patient doesn't have to agree with everything the doctor says in order to demonstrate they're not impaired. The doc could say "you will die. 100%." and another doc at the hospital down the street could say "90% chance you'll die, but you could live" and the patient chooses to latch onto the 10% that doctor gave. That's not impairment. That's disagreeing with the first doctor (and this happens all the time. That's the point of second opinions in the first place). But even if both doctors agree, a patient being in denial about their prognosis or just plain disagreeing does not mean they lack capacity. You should always take into account the other factors at play here - trauma of being in the hospital, trauma of facing mortality, are they afraid of the procedure, are they afraid of death, are they wanting to die at home, are they grieving the life they thought they'd have, what's the prognosis with the procedure? All of these things need to be addressed because you'll find most likely that the patient is in a psychological crisis and needs help teasing that apart, not that they lack capacity.

Another thing to add is that if death isn't imminent, I think you try to work with the patient. Ask them if they want a second opinion on prognosis. But outside clear demonstration of lack of capacity, I would let them go. Letting them go makes it more likely they'll come back should things get worse. The best way to alienate someone from healthcare? Force them to receive it. This is true of psych as well med/surg. That's why I'm very careful who I admit involuntarily and who I let go home.

So I think along the way I must have missed some important aspect of evaluating capacity. I don't understand why people are talking about a change from baseline being important when evaluating capacity. I'm confused!

Let's take the patient in this thread. Let's say that she was in her regular state of health until 3 days ago when her family says she became argumentative and eventually withdrawn and began mumbling to herself about Covid conspiracies and how it was all a big lie. Prior to 3 days ago, she didn't feel this way at all. You'd have to at least entertain the possibility that their mental status is compromised either due to delirium or the illness itself or maybe a stroke or other neurologic phenomonen or some type of mental health decompensation. Anytime someone is acutely altered from baseline, your suspicion of impairment goes up and ergo, so does your suspicion that they may lack capacity. Now sure you can be altered and still have capacity, but if there's been an acute change, then you need to rule out the things I mentioned above that could potentially affect thinking, ability to reason, ability to apply medical facts to your situation and all the other components of capacity.

I may not agree with all of sloop's points, but what they are saying sounds more in line with what I've been taught about capacity evals.

So I'm just going to say it and you do with my opinion whatever you wish. Sloop is wrong in his read of the law and capacity and his advice in this thread should not be followed.

 

[Stagg737]

How exactly is inability to demonstrate capacity very different from lack of capacity?

Do you disagree that capacity is defined by the ability to do some set of things? How exactly do you come to a position that a person lacks capacity other than by establishing that they are unable to do that that set of things that defines capacity?

I cannot believe that you cannot see the difference here. At this point it honestly seems like you're trolling, but I'll clarify.

Yes, capacity is defined as the ability to do some set of things, NOT the ability to demonstrate the ability to do some set of things. I don't understand how you can consider those the same thing...

To your bolded, you don't. That is exactly how you determine capacity. However, a person refusing to demonstrate it is not the same as someone being incapable of doing it. Example:

We're at the office chatting and somehow it comes up that I can do a backflip. So you say, "cool! Do it." I answer that I can, but that I don't feel comfortable attempting it at the office in work clothes and shoes in addition to it being unprofessional. You're telling me that because I'm refusing to do it at that moment, that I am completely incapable of doing it? And you can make that statement with a legal certainty? Really? Would you really say that you would state with legal certainty that I could not do a backflip unless I performed it at that moment? These are real life situations with significant gray areas, not some philosophical argument that can only have a yes or no answer.

I do not understand how you are somehow divining that someone is deciding not to participate versus unable to participate. I also contend that it doesn’t matter. I personally think that “I don’t know” is a nonsense answer to this question. Some medical decision needs to be made, and somebody needs to make it. You don’t need to be 100% sure someone has or does not have capacity to assess that they do or don’t have it. This is professional judgment. Saying “I don’t know” is basically saying “I don’t know how to treat my patient. A medical decision needs to be made one way or another. Either the patient makes it, you make it, or a surrogate makes it. Saying “I don’t know who gets to make this decision” is unhelpful. Saying that you’ll consult the ethics board or whatever is fine, and might be the right thing to do, but it doesn’t actually answer the question that somebody needs to answer at some point, and it’s not like they’re applying some novel analysis. It’s the same question. As a practical matter, if you can’t demonstrate capacity l, you don’t have capacity. If someone is going to make a potentially harmful medical decision that the team disagrees with (which in reality is the only time people assess capacity), you cannot let a potentially incapacitated person make that decision even if they might have capacity in a way that you’re unable to discern that they do.

Since we're asking black and white questions: would you tell a surgical team to cut off a patient's leg for a non-acute reason when the patient doesn't want it amputated because the patient is refusing to answer questions about why they don't want their leg cut off?

Maybe they're just pissed off that everyone seems to want to cut their leg off and that the primary team hasn't listened to them. Now they're expected to answer some psychiatrists questions? I've met plenty of patients who find it insulting or are offended when psychiatry is consulted. You really think that's a valid reason to say they can't refuse a life-altering medical procedure that's irreversible? Really? I honestly cannot believe that any psychiatrist would tell the surgeons that this patient lacks capacity and they should take the leg.

The answer isn't "I don't know". The answer is that you cannot make an accurate assessment at this moment in time d/t the patient refusing to answer those questions. You can also add that based on previous interactions and chart review it is un/likely that patient has capacity because of X, Y, and Z. If there's something obvious causing an ongoing lack of capacity (dementia), that's a different situation from someone who has fluctuating capacity like with delirium and they warrant different approaches.

I think the bolded is the strongest point you make, but that's where chart review, collateral, and if necessary legal/ethical consults come into play.

You’re pretending that an emergency situation is a fundamentally different type of analysis to a non-emergency situation. It’s not. In a non-emergency situation, you might have time to figure out who the decision maker is, get a guardian, or whatever, but the capacity determination and it’s consequences are the same. If it’s an emergency situation and you “don’t know” or “can’t tell” if the patient has capacity, do you let them make the decision or just make the decision for them in what you think is in their best interest? You do the latter. Why? Because, fundamentally, it’s unethical to let a possibly incapacitated person make their own medical decision. It’s not because “it’s an emergency.” The “it’s an emergency” part only governs who makes the decision for the patient. It does not modify the fundamental analysis under which we don’t allow “possibly incapacitated” people make a medical decision.

Yes, the bolded is exactly why the situation is different. The how and what of the evaluation are the same, but in non-emergencies we can usually sit around for a while and see if the patient either becomes cooperative or further evidence of capacity (or lack of) becomes evident. I don't think we are disagreeing on the part of emergency situations, just on capacity evals in a non-emergent/non-acute situation.

 

[sloop]

I cannot believe that you cannot see the difference here. At this point it honestly seems like you're trolling, but I'll clarify.

Yes, capacity is defined as the ability to do some set of things, NOT the ability to demonstrate the ability to do some set of things. I don't understand how you can consider those the same thing...

To your bolded, you don't. That is exactly how you determine capacity. However, a person refusing to demonstrate it is not the same as someone being incapable of doing it. Example:

We're at the office chatting and somehow it comes up that I can do a backflip. So you say, "cool! Do it." I answer that I can, but that I don't feel comfortable attempting it at the office in work clothes and shoes in addition to it being unprofessional. You're telling me that because I'm refusing to do it at that moment, that I am completely incapable of doing it? And you can make that statement with a legal certainty? Really? Would you really say that you would state with legal certainty that I could not do a backflip unless I performed it at that moment? These are real life situations with significant gray areas, not some philosophical argument that can only have a yes or no answer.

The difference between your example and the example of someone refusing a procedure is that in a casual conversation you can assume that people have the abilities they say they have because the stakes are minimal. Whether someone can have do a backflip doesn’t bear on an important decision, so it frankly does not matter much whether they can actually do it. In such circumstances, people will generally take someone at their word and move on. The difference here is that the ability to do a set of things (that set of things that defines capacity) is essential to a person’s ability to make a decision.

Since we're asking black and white questions: would you tell a surgical team to cut off a patient's leg for a non-acute reason when the patient doesn't want it amputated because the patient is refusing to answer questions about why they don't want their leg cut off?

Maybe they're just pissed off that everyone seems to want to cut their leg off and that the primary team hasn't listened to them. Now they're expected to answer some psychiatrists questions? I've met plenty of patients who find it insulting or are offended when psychiatry is consulted. You really think that's a valid reason to say they can't refuse a life-altering medical procedure that's irreversible? Really? I honestly cannot believe that any psychiatrist would tell the surgeons that this patient lacks capacity and they should take the leg.

The answer isn't "I don't know". The answer is that you cannot make an accurate assessment at this moment in time d/t the patient refusing to answer those questions. You can also add that based on previous interactions and chart review it is un/likely that patient has capacity because of X, Y, and Z. If there's something obvious causing an ongoing lack of capacity (dementia), that's a different situation from someone who has fluctuating capacity like with delirium and they warrant different approaches.

I think the bolded is the strongest point you make, but that's where chart review, collateral, and if necessary legal/ethical consults come into play.

There is no way to establish that someone has capacity other than them demonstrating it. You mentioned an amputation. Say someone has a gangrenous leg. A decision about removing that leg has to be made sooner or later. If that patient refuses to talk to anyone about their decision, even when they’re informed that people are concerned about their ability to make this choice and are trying to figure out if someone else has to make the decision for them, that absolutely raises concerns. You’re speculating that it’s possible that they have a rational reason for not participating but how the hell do you actually know that? You can’t know what’s in the head of someone who won’t talk to you.

If you tell someone who is making a rational decision that you’re trying to talk to them about their decision so that you can figure out if they can make the decision themselves or if someone else has to make it on their behalf, there is a presumption that the person will participate. Someone with a rational interest in keeping their leg is generally going to explain why they want to keep their leg so that their decision is respected. It’s not like we’re going to just let someone die because they said they don’t want their gangrenous leg removed and then refuse to talk to anybody about it.

If one of the patient’s family members tells you that the patient talked to them and told them all about why they’re making their decision, that’s great. I’m talking about a situation where the patient refuses to talk to anyone regarding their decision. You can consult the ethics board, but how exactly do you think they’re going to wind up in a different position then you are in? They can’t climb inside the patient’s head either. Legal is not helpful here because they have no idea how to treat patients. All they will be able to tell you is how you can minimize your liability risk, which is a totally different question from what you should do clinically.

Yes, the bolded is exactly why the situation is different. The how and what of the evaluation are the same, but in non-emergencies we can usually sit around for a while and see if the patient either becomes cooperative or further evidence of capacity (or lack of) becomes evident. I don't think we are disagreeing on the part of emergency situations, just on capacity evals in a non-emergent/non-acute situation.

I mean kind of but not really. There is a lot of stuff that is not an emergency but really needs to have a decision made about it before it becomes an emergency. You’re right if you’re talking about someone refusing to take a statin or something preventative, but many decisions are not emergencies but urgently need to be addressed. I do not think it is fair to the patient to just say “well, I can’t really tell if you have capacity or not so I’m going to wait until you decompensate and this becomes an emergency before I do anything about it.”

What I am saying is that the fundamental logic for an emergency and a non-emergency is exactly the same. It is simply the execution that differs. If someone obviously has capacity and refuses an emergency, life-saving intervention, you don’t do the intervention. If someone isn’t talking to you about an emergency life-saving intervention, you do the intervention. Why? Because they haven’t shown that they have capacity and it’s unethical to let someone suffer harm because of their inability to make rational decisions. It doesn’t somehow become ethical to let patients suffer harm for that reason when the decision is a non-emergent one. This is why we assess capacity in the first place. It allows us to determine whether the patient can make the decision or whether a surrogate decision maker should make the decision. The ethical principle is not different between an emergency or a non-emergency. People who demonstrate capacity can make decisions and people who don’t can’t. That is the principle. Ideally, someone close to the patient who understands their values is better situated to make these decisions but the limitation in an emergency is that it’s not feasible to get hold of the surrogate, assess whether they’re really the appropriate surrogate, explain the decision and its consequences to them, wait for them to process the information, answer all of their questions, etc. The exception for emergencies is purely a practical consideration, not an ethical distinction.

 

[docksan]

Your presumptions violate a few ethics principles.

A patient has the right to refuse life saving treatment if they're of sound mind.

High risk, high benefit, patient decision is congruent? Probably has capacity.

Low risk, high benefit, patient decision is incongruent? May not have capacity.

High risk, low benefit, patient wants it anyway? May not have capacity.

Low risk, high benefit, patient doesn't want it? May not have capacity.

In the situations where a patient may not have capacity you then need to be able to gauge their ability to make decisions and reasonably process information with respect to their intellectual capability. We've discussed this to death.

If a patient refuses to demonstrate that capacity you can't assume they don't have it, even if you can presume as such. Good luck in court if the patient sues and then is able to demonstrate they understood the whole time and just didn't like you or didn't appreciate a psychiatrist coming in to talk to them.

If a patient consents to demonstrate capacity and does not adequately do so then congratulations, you have determined they don't have capacity.

I had one such patient who was a lawyer who I believed to be incapacitated and later when my attending went to talk to them we found out they knew their rights and were worried about having them taken away by psychiatry thus they were invoking their right to remain silent. They 100% had capacity and demonstrated as such when they saw fit to.

It's not a good idea to act in what you feel is their best interests just because a patient doesn't want to talk to you. Heck, I even had a consult recently where the primary team thought a patient was delirious and needed meds for sedation. When I talked to the patient, who was refusing to talk to multiple people, he was angry that he had a major surgical procedure that was going to change his QOL. We had a good talk about it too and he was completely reasonable. Yet the team who consulted us was pretty adamant the patient didn't have capacity.

 

[sloop]

Your presumptions violate a few ethics principles.

They do not.

A patient has the right to refuse life saving treatment if they're of sound mind.

High risk, high benefit, patient decision is congruent? Probably has capacity.

Low risk, high benefit, patient decision is incongruent? May not have capacity.

High risk, low benefit, patient wants it anyway? May not have capacity.

Low risk, high benefit, patient doesn't want it? May not have capacity.

I agree with this.

In the situations where a patient may not have capacity you then need to be able to gauge their ability to make decisions and reasonably process information with respect to their intellectual capability. We've discussed this to death.

I also agree with this.

If a patient refuses to demonstrate that capacity you can't assume they don't have it, even if you can presume as such. Good luck in court if the patient sues and then is able to demonstrate they understood the whole time and just didn't like you or didn't appreciate a psychiatrist coming in to talk to them.

If a patient refuses to talk to you, what exactly are you supposed to do? Imagine that you have a patient who needs a procedure done, otherwise they’ll likely die. The procedure doesn’t need to be done immediately, but it needs to be done in 1-2 days, so it’s not an emergency. The patient waves people away when they tell him he needs this procedure, indicating that he does not want it done, but otherwise refuses to talk to anyone (not you, not the treatment team, not his wife, not his children). What exactly do you think the treatment team should do?

As I’ve mentioned, you can of course talk to the ethics board, but that’s a cop out for the sake of this conversation. Imagine you’re on the ethics board. What exactly are you recommending? Should the treatment team plan to go ahead with the procedure or not?

Again, capacity does not need to be determined with 100% certainty. That’s an impossible standard. It is also not what is required for standard of care. Standard of care is just that care that a reasonably competent physician would take under similar circumstances. I think my position is on pretty good footing. This is, in part, because my position is entirely congruent with this article on the issue in JAMA, which I believe someone had already cited in this thread. The article states:

“When clinicians have done their best to obtain their patient's trust and engage in a dialogue with the patient, and when they have tried unsuccessfully to find others with whom the patient would agree to talk, they should assess the risk to the patient if the patient's wishes are followed. If the risk is significant, they should choose a course of action as if the patient were incompetent. They should also explain this to the patient as if the patient were competent.”

It is really bewildering to me that people in this thread are implying that my position on this issue implies that I'm doing some sort of Wild West stuff with regard to capacity that is going to get me sued. My position is supported by a well-qualified bioethicist who published an article on this exact issue in a well-respected medical journal. I doubt that this position is as fringe as some in this thread are making it out to be.

When Patients Refuse Assessment of Decision-Making Capacity

When patients refuse beneficial treatment, the assessment of decision-making capacity plays a key role in determining the best course of action. However, situations in which patients refuse to explain their reasons occur. This can make an assessment of capacity impossible. In such cases...

jamanetwork.com

If a patient consents to demonstrate capacity and does not adequately do so then congratulations, you have determined they don't have capacity.

I had one such patient who was a lawyer who I believed to be incapacitated and later when my attending went to talk to them we found out they knew their rights and were worried about having them taken away by psychiatry thus they were invoking their right to remain silent. They 100% had capacity and demonstrated as such when they saw fit to.

And this just leads to the point that a capacity evaluation is a fluid thing and can only be based on the information you have available. You were probably right to initially opine that they lacked capacity. You were also probably right to later change your opinion when they demonstrated that they had it.

It's not a good idea to act in what you feel is their best interests just because a patient doesn't want to talk to you. Heck, I even had a consult recently where the primary team thought a patient was delirious and needed meds for sedation. When I talked to the patient, who was refusing to talk to multiple people, he was angry that he had a major surgical procedure that was going to change his QOL. We had a good talk about it too and he was completely reasonable. Yet the team who consulted us was pretty adamant the patient didn't have capacity.

You are talking about a totally different scenario where the patient talks to you about their decision, but doesn’t talk to others about it. I am talking about a situation where the patient is not talking to anybody about it.

 

[PsyDr]

I think the correlate to this is when the CA prison system started treating racism as a delusion. I forget what happened to that. It was an interesting line between "same cultural peers" and "impairing".

 

[docksan]

Even in the situation where they don't talk to anyone about it the patients rights are still the most important unless it's mission critical.

 

[Stagg737]

The difference between your example and the example of someone refusing a procedure is that in a casual conversation you can assume that people have the abilities they say they have because the stakes are minimal. Whether someone can have do a backflip doesn’t bear on an important decision, so it frankly does not matter much whether they can actually do it. In such circumstances, people will generally take someone at their word and move on. The difference here is that the ability to do a set of things (that set of things that defines capacity) is essential to a person’s ability to make a decision.

You're missing the point that refusal to demonstrate is not the same as inability to demonstrate. I don't know how to make this clearer without discussing the basics of the English language. Different example: Patient in outpt clinic has an A1c of 10 but they're refusing to take their insulin. They're not acutely in danger but could be at risk of medical emergency. The reason they don't take their insulin is that they just don't want to. According to you they're lacking capacity but I don't think I've ever heard an outpatient physician placing a hold on their patient for that reason. Do you think the outpatient doc is acting unethically by not forcing the insulin or not?

I mean kind of but not really. There is a lot of stuff that is not an emergency but really needs to have a decision made about it before it becomes an emergency. You’re right if you’re talking about someone refusing to take a statin or something preventative, but many decisions are not emergencies but urgently need to be addressed. I do not think it is fair to the patient to just say “well, I can’t really tell if you have capacity or not so I’m going to wait until you decompensate and this becomes an emergency before I do anything about it.”

Except this is exactly what you do and is the ethically and legally correct answer if you cannot adequately determine capacity. That being said, most patients who do have capacity will eventually talk to at least someone. Especially after they are informed ethics and the legal teams will be involved. Typically, they'll refuse to talk to you but then later ask nursing to speak with you when they realize you're actually trying to help them. If they continue to refuse, they'll also usually provide some other evidence that they don't actually have capacity. Regardless, the bolded is exactly what every educational institution and legal individual I've ever talked to or listened to has confirmed.

The ethical principle is not different between an emergency or a non-emergency. People who demonstrate capacity can make decisions and people who don’t can’t. That is the principle.

Wat? That's not true at all and that's not even an ethical principle. If this is what you're arguing then the entire foundational premise of your argument is misguided and incorrect d/t a lack of understanding of what the ethical principles being addressed actually are.

The point of capacity is to aid in maintaining the ethical principle that a patient has autonomy over their own body and health. Your argument is that if a patient refuses to demonstrate capacity, then they should not have autonomy as someone else should make the decision for them. This argument is ethically wrong if the patient actually does have capacity and just isn't participating as you've inappropriately stripped a patient of their autonomy. In a non-emergent setting, you continue to prioritize autonomy as the primary principle as you do not act against a patient's wishes unless you have evidence that they lack capacity and therefore may be making decisions that would jeopardize their autonomy and if of right mind. This means not deeming them incapacitated until you can either speak to them and determine capacity at the time, or reviewing collateral information to determine that there is evidence that they were lacking capacity at one time and that their mental status has not changed.

In an emergent setting, the primary principle is NOT autonomy but non-maleficence and beneficence. This changes because while we are still attempting to maintain the autonomy of the patient, it is assumed that they do not have any autonomy if they're dead. So by acting against their wishes you are acting out of beneficence and non-maleficence by maintaining their future autonomy.

The exception for emergencies is a practical consideration based on a shift in the primary ethical principle being supported, thus providing the greatest chance of acting in the most ethical way possible.

 

[Stagg737]

There is no way to establish that someone has capacity other than them demonstrating it. You mentioned an amputation. Say someone has a gangrenous leg. A decision about removing that leg has to be made sooner or later. If that patient refuses to talk to anyone about their decision, even when they’re informed that people are concerned about their ability to make this choice and are trying to figure out if someone else has to make the decision for them, that absolutely raises concerns. You’re speculating that it’s possible that they have a rational reason for not participating but how the hell do you actually know that? You can’t know what’s in the head of someone who won’t talk to you.

If you tell someone who is making a rational decision that you’re trying to talk to them about their decision so that you can figure out if they can make the decision themselves or if someone else has to make it on their behalf, there is a presumption that the person will participate. Someone with a rational interest in keeping their leg is generally going to explain why they want to keep their leg so that their decision is respected. It’s not like we’re going to just let someone die because they said they don’t want their gangrenous leg removed and then refuse to talk to anybody about it.

If one of the patient’s family members tells you that the patient talked to them and told them all about why they’re making their decision, that’s great. I’m talking about a situation where the patient refuses to talk to anyone regarding their decision. You can consult the ethics board, but how exactly do you think they’re going to wind up in a different position then you are in? They can’t climb inside the patient’s head either. Legal is not helpful here because they have no idea how to treat patients. All they will be able to tell you is how you can minimize your liability risk, which is a totally different question from what you should do clinically.

Also, to clarify, if the patient has a gangrenous (or whatever indication) to have an amputation but they're refusing and it's not emergent, you would inform the surgical team to cut off the leg if they believe that's the best treatment? Even if there are alternative treatments (like IV antibiotics for gangrene)?

Let's say you do what I suggested and consult ethics and legal and 1 week later nothing has changed. Still non-emergent, patient still not participating, but also not showing any obvious signs of lacking capacity. Are you going to continue to recommend the leg be amputated despite no change in condition?

I'm legitimately curious what your answers are here, as I'm flabbergasted that this is even really a discussion.

 

[Old&InTheWay]

This thread jumped the shark a long time ago, but I will point out that something that is being discussed here but not made explicit is the idea of "threshold capacity" which refers to the patient needing to demonstrate a different degree of sophistication in their understanding based upon the risk/benefit ratio of the decision being made. I think most of us do this intuitively (e.g. no one is asking for capacity evaluation because a patient is refusing their Tylenol) but not everyone agrees this should be the approach and the Applebaum & Grisso criteria does not account for this. I wonder whether this may be driving part of the disagreement here.

 

[sloop]

You're missing the point that refusal to demonstrate is not the same as inability to demonstrate. I don't know how to make this clearer without discussing the basics of the English language. Different example: Patient in outpt clinic has an A1c of 10 but they're refusing to take their insulin. They're not acutely in danger but could be at risk of medical emergency. The reason they don't take their insulin is that they just don't want to. According to you they're lacking capacity but I don't think I've ever heard an outpatient physician placing a hold on their patient for that reason. Do you think the outpatient doc is acting unethically by not forcing the insulin or not?

I already said that I agree that the relative danger of the patient’s wishes being followed is a consideration. But in terms of the broader point, it may be the case that refusal to demonstrate is actually different than inability to demonstrate, but it is not functionally different. If someone takes the practical portion of their driver’s license test, it may be the case that someone unable to drive appropriately and someone being unwilling to drive appropriately are different situations, but they’re not functionally different for the purposes of the DMV approving licenses. That is my point here. I’m not saying that someone refusing to demonstrate is actually in the same position as someone unable to, but absent them somehow demonstrating it to someone else there is no way to tell.

You’re acting as if the “patient’s rights” only swings in favor of respecting their choice. It does not. This issue is actually an issue of competing patients’ rights. There is the right of an incapacitated patient to be protected from the negative consequences of their incapacity, and there is the right of competent patients to make their own medical decisions.

Except this is exactly what you do and is the ethically and legally correct answer if you cannot adequately determine capacity. That being said, most patients who do have capacity will eventually talk to at least someone. Especially after they are informed ethics and the legal teams will be involved. Typically, they'll refuse to talk to you but then later ask nursing to speak with you when they realize you're actually trying to help them. If they continue to refuse, they'll also usually provide some other evidence that they don't actually have capacity. Regardless, the bolded is exactly what every educational institution and legal individual I've ever talked to or listened to has confirmed.

That might be what you do, but it is bad medicine. As I said, patients have multiple different rights. One of those is to be protected from the harm caused by making decisions they lack capacity to make.

If you’re saying that we’re in a situation where we “don’t know” if a patient is incapacitated, logically you must acknowledge that we are possibly dealing with an incapacitated patient. Would you not also agree that incapacitated patients have a right to be protected from making harmful decisions they don’t have capacity to make? Exactly what I would do would depend on what the treatment team told me about the patient’s prognosis under the various options, but I do think it could be very appropriate to cut off a leg in such circumstances. Say the surgeon tells me that by waiting, the patient has a significant risk of becoming septic, at which point their survival odds are much worse than if they had the procedure now. In such a circumstance, waiting does not do enough to protect the possibly incompetent patient from harm caused by allowing them to make a decision they lack capacity to make. By waiting, you are actually harming the patient because the chance of recovery and magnitude of that recovery is lessened. The chances that a person with capacity is going to refuse to talk up until the point that they’re putting them under to chop their leg off is minimal, in part because that itself would be a highly irrational behavior.

Wat? That's not true at all and that's not even an ethical principle. If this is what you're arguing then the entire foundational premise of your argument is misguided and incorrect d/t a lack of understanding of what the ethical principles being addressed actually are.

The point of capacity is to aid in maintaining the ethical principle that a patient has autonomy over their own body and health. Your argument is that if a patient refuses to demonstrate capacity, then they should not have autonomy as someone else should make the decision for them. This argument is ethically wrong if the patient actually does have capacity and just isn't participating as you've inappropriately stripped a patient of their autonomy. In a non-emergent setting, you continue to prioritize autonomy as the primary principle as you do not act against a patient's wishes unless you have evidence that they lack capacity and therefore may be making decisions that would jeopardize their autonomy and if of right mind. This means not deeming them incapacitated until you can either speak to them and determine capacity at the time, or reviewing collateral information to determine that there is evidence that they were lacking capacity at one time and that their mental status has not changed.

You’re misconstruing my statement as if it was not a specific illustration of the competition between beneficence/nonmaleficence and autonomy. You’re right that it is not strictly a principle itself, but it illustrates the heuristic we use to approach these conflicts.

Also, on what planet is autonomy a “primary principle?” There is no primary principle. There are many, at times competing, principles. Capacity evaluation involves all of the principles equally. It’s not fundamentally about respecting autonomy more than it is about any other principle.

My argument is that if someone refuses to talk to anyone about their decision and the decision is one of great importance, they should be treated as if they are incompetent. I don’t really care what your opinion is about that. This is actually how you’re supposed to treat patients.

Again, I’ll cite an article written by a bioethicist:

“When clinicians have done their best to obtain their patient's trust and engage in a dialogue with the patient, and when they have tried unsuccessfully to find others with whom the patient would agree to talk, they should assess the risk to the patient if the patient's wishes are followed. If the risk is significant, they should choose a course of action as if the patient were incompetent. They should also explain this to the patient as if the patient were competent.”

When Patients Refuse Assessment of Decision-Making Capacity

When patients refuse beneficial treatment, the assessment of decision-making capacity plays a key role in determining the best course of action. However, situations in which patients refuse to explain their reasons occur. This can make an assessment of capacity impossible. In such cases...

jamanetwork.com

Do you have a similarly reputable source for why you think this is wrong. If not, why are we pretending this is a matter of actual dispute rather than a personal crusade you have because you see autonomy as fundamentally more important than any other principle?

In an emergent setting, the primary principle is NOT autonomy but non-maleficence and beneficence. This changes because while we are still attempting to maintain the autonomy of the patient, it is assumed that they do not have any autonomy if they're dead. So by acting against their wishes you are acting out of beneficence and non-maleficence by maintaining their future autonomy.

Again, there is no “primary principle.” On what arbitrary basis are you concluding that one principle should govern our behavior in one setting while another governs our behavior in another setting?

In the situation of someone who will not talk to anyone about their decision, the principles of beneficence and nonmaleficence are in conflict with that of autonomy. Here you have a person who possibly has capacity and possibly lacks capacity. In this situation, nonmaleficence and beneficence favor the course of action that will do the patient good and reduce their risk of adverse outcomes. Autonomy favors letting them make the decision. Do you really think that something magical happens when a person’s BP tanks and we no longer care as much about their autonomy? That is ridiculous. We give equal consideration to all of these principles in both situations. The person who will not discuss their decisions with anyone has the same right to be protected against harm from being allowed to make a decision they might not have capacity to make whether those consequences are gradual deterioration of their chance of recovery or immediate loss of function.

The exception for emergencies is a practical consideration based on a shift in the primary ethical principle being supported, thus providing the greatest chance of acting in the most ethical way possible.

Again, “primary ethical principle” is not a thing. They are all equally considered at all times. Nothing about an emergency elevates a person’s right to be protected from bad medical decisions they don’t understand, nor does it diminish their right to make decisions about their care that they do understand. There is no “shift in primary ethical principle.” That is arbitrary nonsense. The only difference in an emergency situation is who makes the decision for someone who lacks capacity (or possibly lacks capacity). In most general circumstances, that is a surrogate decision maker. In emergencies, it may be the physician.

Also, to clarify, if the patient has a gangrenous (or whatever indication) to have an amputation but they're refusing and it's not emergent, you would inform the surgical team to cut off the leg if they believe that's the best treatment? Even if there are alternative treatments (like IV antibiotics for gangrene)?

Let's say you do what I suggested and consult ethics and legal and 1 week later nothing has changed. Still non-emergent, patient still not participating, but also not showing any obvious signs of lacking capacity. Are you going to continue to recommend the leg be amputated despite no change in condition?

I'm legitimately curious what your answers are here, as I'm flabbergasted that this is even really a discussion.

As I said above, if the alternative treatment exposes the patient to a significantly worse outcome than they would have had if the recommended intervention had been expeditiously provided, I do think it would be reasonable to cut off the leg. This is doing the alternative treatment does not actually protect the possibly incapacitated person from harm resulting from a decision they don’t understand.

 

[clausewitz2]

I already said that I agree that the relative danger of the patient’s wishes being followed is a consideration. But in terms of the broader point, it may be the case that refusal to demonstrate is actually different than inability to demonstrate, but it is not functionally different. If someone takes the practical portion of their driver’s license test, it may be the case that someone unable to drive appropriately and someone being unwilling to drive appropriately are different situations, but they’re not functionally different for the purposes of the DMV approving licenses. That is my point here. I’m not saying that someone refusing to demonstrate is actually in the same position as someone unable to, but absent them somehow demonstrating it to someone else there is no way to tell.

You’re acting as if the “patient’s rights” only swings in favor of respecting their choice. It does not. This issue is actually an issue of competing patients’ rights. There is the right of an incapacitated patient to be protected from the negative consequences of their incapacity, and there is the right of competent patients to make their own medical decisions.



That might be what you do, but it is bad medicine. As I said, patients have multiple different rights. One of those is to be protected from the harm caused by making decisions they lack capacity to make.

If you’re saying that we’re in a situation where we “don’t know” if a patient is incapacitated, logically you must acknowledge that we are possibly dealing with an incapacitated patient. Would you not also agree that incapacitated patients have a right to be protected from making harmful decisions they don’t have capacity to make? Exactly what I would do would depend on what the treatment team told me about the patient’s prognosis under the various options, but I do think it could be very appropriate to cut off a leg in such circumstances. Say the surgeon tells me that by waiting, the patient has a significant risk of becoming septic, at which point their survival odds are much worse than if they had the procedure now. In such a circumstance, waiting does not do enough to protect the possibly incompetent patient from harm caused by allowing them to make a decision they lack capacity to make. By waiting, you are actually harming the patient because the chance of recovery and magnitude of that recovery is lessened. The chances that a person with capacity is going to refuse to talk up until the point that they’re putting them under to chop their leg off is minimal, in part because that itself would be a highly irrational behavior.


You’re misconstruing my statement as if it was not a specific illustration of the competition between beneficence/nonmaleficence and autonomy. You’re right that it is not strictly a principle itself, but it illustrates the heuristic we use to approach these conflicts.

Also, on what planet is autonomy a “primary principle?” There is no primary principle. There are many, at times competing, principles. Capacity evaluation involves all of the principles equally. It’s not fundamentally about respecting autonomy more than it is about any other principle.

My argument is that if someone refuses to talk to anyone about their decision and the decision is one of great importance, they should be treated as if they are incompetent. I don’t really care what your opinion is about that. This is actually how you’re supposed to treat patients.

Again, I’ll cite an article written by a bioethicist:

“When clinicians have done their best to obtain their patient's trust and engage in a dialogue with the patient, and when they have tried unsuccessfully to find others with whom the patient would agree to talk, they should assess the risk to the patient if the patient's wishes are followed. If the risk is significant, they should choose a course of action as if the patient were incompetent. They should also explain this to the patient as if the patient were competent.”

When Patients Refuse Assessment of Decision-Making Capacity

When patients refuse beneficial treatment, the assessment of decision-making capacity plays a key role in determining the best course of action. However, situations in which patients refuse to explain their reasons occur. This can make an assessment of capacity impossible. In such cases...

jamanetwork.com

Do you have a similarly reputable source for why you think this is wrong. If not, why are we pretending this is a matter of actual dispute rather than a personal crusade you have because you see autonomy as fundamentally more important than any other principle?


Again, there is no “primary principle.” On what arbitrary basis are you concluding that one principle should govern our behavior in one setting while another governs our behavior in another setting?

In the situation of someone who will not talk to anyone about their decision, the principles of beneficence and nonmaleficence are in conflict with that of autonomy. Here you have a person who possibly has capacity and possibly lacks capacity. In this situation, nonmaleficence and beneficence favor the course of action that will do the patient good and reduce their risk of adverse outcomes. Autonomy favors letting them make the decision. Do you really think that something magical happens when a person’s BP tanks and we no longer care as much about their autonomy? That is ridiculous. We give equal consideration to all of these principles in both situations. The person who will not discuss their decisions with anyone has the same right to be protected against harm from being allowed to make a decision they might not have capacity to make whether those consequences are gradual deterioration of their chance of recovery or immediate loss of function.


Again, “primary ethical principle” is not a thing. They are all equally considered at all times. Nothing about an emergency elevates a person’s right to be protected from bad medical decisions they don’t understand, nor does it diminish their right to make decisions about their care that they do understand. There is no “shift in primary ethical principle.” That is arbitrary nonsense. The only difference in an emergency situation is who makes the decision for someone who lacks capacity (or possibly lacks capacity). In most general circumstances, that is a surrogate decision maker. In emergencies, it may be the physician.



As I said above, if the alternative treatment exposes the patient to a significantly worse outcome than they would have had if the recommended intervention had been expeditiously provided, I do think it would be reasonable to cut off the leg. This is doing the alternative treatment does not actually protect the possibly incapacitated person from harm resulting from a decision they don’t understand.

You can't possibly believe that all four of the traditional bioethical principles are equally weighted at all times. This would mean you are simply paralyzed anytime any of them come into conflict, because after all, they are all equally important always in all circumstances.

Maybe you get around this by saying, well, violations of principles can be of different weights/magnitudes, but this is just equivalent to putting different weights on the principles themselves in different situations. An arithmetic formalism more or less.

You mention not caring about our opinions about the basic premise of your argument. Obviously many people ITT take issue with it. You refuse to engage with the idea that there might be validity in another viewpoint. An analytically inclined sort would wonder about possibly replicating dynamics relevant to these particular clinical situations.

 

[clausewitz2]

I already said that I agree that the relative danger of the patient’s wishes being followed is a consideration. But in terms of the broader point, it may be the case that refusal to demonstrate is actually different than inability to demonstrate, but it is not functionally different. If someone takes the practical portion of their driver’s license test, it may be the case that someone unable to drive appropriately and someone being unwilling to drive appropriately are different situations, but they’re not functionally different for the purposes of the DMV approving licenses. That is my point here. I’m not saying that someone refusing to demonstrate is actually in the same position as someone unable to, but absent them somehow demonstrating it to someone else there is no way to tell.

You’re acting as if the “patient’s rights” only swings in favor of respecting their choice. It does not. This issue is actually an issue of competing patients’ rights. There is the right of an incapacitated patient to be protected from the negative consequences of their incapacity, and there is the right of competent patients to make their own medical decisions.



That might be what you do, but it is bad medicine. As I said, patients have multiple different rights. One of those is to be protected from the harm caused by making decisions they lack capacity to make.

If you’re saying that we’re in a situation where we “don’t know” if a patient is incapacitated, logically you must acknowledge that we are possibly dealing with an incapacitated patient. Would you not also agree that incapacitated patients have a right to be protected from making harmful decisions they don’t have capacity to make? Exactly what I would do would depend on what the treatment team told me about the patient’s prognosis under the various options, but I do think it could be very appropriate to cut off a leg in such circumstances. Say the surgeon tells me that by waiting, the patient has a significant risk of becoming septic, at which point their survival odds are much worse than if they had the procedure now. In such a circumstance, waiting does not do enough to protect the possibly incompetent patient from harm caused by allowing them to make a decision they lack capacity to make. By waiting, you are actually harming the patient because the chance of recovery and magnitude of that recovery is lessened. The chances that a person with capacity is going to refuse to talk up until the point that they’re putting them under to chop their leg off is minimal, in part because that itself would be a highly irrational behavior.


You’re misconstruing my statement as if it was not a specific illustration of the competition between beneficence/nonmaleficence and autonomy. You’re right that it is not strictly a principle itself, but it illustrates the heuristic we use to approach these conflicts.

Also, on what planet is autonomy a “primary principle?” There is no primary principle. There are many, at times competing, principles. Capacity evaluation involves all of the principles equally. It’s not fundamentally about respecting autonomy more than it is about any other principle.

My argument is that if someone refuses to talk to anyone about their decision and the decision is one of great importance, they should be treated as if they are incompetent. I don’t really care what your opinion is about that. This is actually how you’re supposed to treat patients.

Again, I’ll cite an article written by a bioethicist:

“When clinicians have done their best to obtain their patient's trust and engage in a dialogue with the patient, and when they have tried unsuccessfully to find others with whom the patient would agree to talk, they should assess the risk to the patient if the patient's wishes are followed. If the risk is significant, they should choose a course of action as if the patient were incompetent. They should also explain this to the patient as if the patient were competent.”

When Patients Refuse Assessment of Decision-Making Capacity

When patients refuse beneficial treatment, the assessment of decision-making capacity plays a key role in determining the best course of action. However, situations in which patients refuse to explain their reasons occur. This can make an assessment of capacity impossible. In such cases...

jamanetwork.com

Do you have a similarly reputable source for why you think this is wrong. If not, why are we pretending this is a matter of actual dispute rather than a personal crusade you have because you see autonomy as fundamentally more important than any other principle?


Again, there is no “primary principle.” On what arbitrary basis are you concluding that one principle should govern our behavior in one setting while another governs our behavior in another setting?

In the situation of someone who will not talk to anyone about their decision, the principles of beneficence and nonmaleficence are in conflict with that of autonomy. Here you have a person who possibly has capacity and possibly lacks capacity. In this situation, nonmaleficence and beneficence favor the course of action that will do the patient good and reduce their risk of adverse outcomes. Autonomy favors letting them make the decision. Do you really think that something magical happens when a person’s BP tanks and we no longer care as much about their autonomy? That is ridiculous. We give equal consideration to all of these principles in both situations. The person who will not discuss their decisions with anyone has the same right to be protected against harm from being allowed to make a decision they might not have capacity to make whether those consequences are gradual deterioration of their chance of recovery or immediate loss of function.


Again, “primary ethical principle” is not a thing. They are all equally considered at all times. Nothing about an emergency elevates a person’s right to be protected from bad medical decisions they don’t understand, nor does it diminish their right to make decisions about their care that they do understand. There is no “shift in primary ethical principle.” That is arbitrary nonsense. The only difference in an emergency situation is who makes the decision for someone who lacks capacity (or possibly lacks capacity). In most general circumstances, that is a surrogate decision maker. In emergencies, it may be the physician.



As I said above, if the alternative treatment exposes the patient to a significantly worse outcome than they would have had if the recommended intervention had been expeditiously provided, I do think it would be reasonable to cut off the leg. This is doing the alternative treatment does not actually protect the possibly incapacitated person from harm resulting from a decision they don’t understand.

Also, perhaps you should read the paper you cited a touch more closely:

"Refusal to give reasons does not point to incompetence either, although this view has been defended.1 Refusal to give reasons frustrates attempts to assess capacity, but the fact that an ability cannot be assessed does not mean that the patient lacks it."

"However, extending to patients an obligation to discuss their reasons is problematic.7 An assessment of decision-making capacity can include probing for personal elements, such as fears, doubts, and mental abilities. It is an intervention. For competent patients, interventions are subjected to patient consent. There is no compelling reason for a capacity assessment to be considered differently. Of course, this intervention is the one that is needed to determine whether its own refusal is autonomous. But this difficulty cannot be shied away from by giving this intervention a special status. In addition, enforcing assessment of capacity requires forcing the patient to answer questions. If persuasion does not suffice, forcing the patient to answer questions to determine capacity is not an acceptable option."

You literally above say a patient's ability to not have their leg amputated depended on being willing to talk to you, i think it is fair to say you are acting as if there is an obligation for them to discuss their reasons.

 

[heartsink]

I'm surprised this topic hasn't come up earlier in the pandemic. I just wanted to say how much I've enjoyed reading and learning from this thread.

I wonder how the advent of online forums that allow people who have certain outlier ideas to more easily come together to develop into more solidified beliefs has affected our idea of delusions or not. There are lots of people on the schizophrenia spectrum that can come together to form a subculture. If that subculture endorses ideas that a majority of people disagree with, would that be deemed delusional if they are fixed and (according to that dominant group) false?

A couple of questions that I haven't seen answered directly:

• Is believing in QAnon a shared delusion or not?
• Is denying that COVID-19 is a real thing a delusion or not?

This was a thought provoking post for me because it made me consider a third bullet point one could add to the end of this:

"Is believing you are transgender a delusion or not?"

Its a bit off-topic for the thread (which has been very interesting to read) but I'm genuinely interested in this now: take most of the salient points made in the first page of this thread -- most revolving around the dissonance between personal belief vs. medical basis -- and replace COVID-denial with transgender identity and the discussion between most posters proceeds seamlessly.

Maybe, probably, it should just be a separate thread at a separate time, but I am very eager to hear thoughts on this.

 

[docksan]

Driving down the delusion hole requires you to have evidence their beliefs may not be real.

A staggering difference I see is that many transgender patients are content following appropriate treatment and suffer stigma beyond that which makes them depressed, etc.

Delusions such as those found in psychosis or delusional disorder cause significant dysphoria, sure, but generally do not resolve with treatment or take a long time to resolve. Is there evidence that their neuropsychological gender is false and not grounded in reality?

I'd probably want to know why this is being proposed, since it's a slippery slope to declare such things delusions. What's to say depression or anxiety isn't a delusion, in that regard? Most people aren't severely depressed, so when someone comes up to you and tells you they're severely depressed because their gangrenous leg was amputated and have phantom limb pain, are they delusional?

 

[Old&InTheWay]

This was a thought provoking post for me because it made me consider a third bullet point one could add to the end of this:

"Is believing you are transgender a delusion or not?"

Its a bit off-topic for the thread (which has been very interesting to read) but I'm genuinely interested in this now: take most of the salient points made in the first page of this thread -- most revolving around the dissonance between personal belief vs. medical basis -- and replace COVID-denial with transgender identity and the discussion between most posters proceeds seamlessly.

Maybe, probably, it should just be a separate thread at a separate time, but I am very eager to hear thoughts on this.

This seems provocative/inflammatory and probably should be its own thread if it actually is a worthwhile topic of discussion.

I had a patient once who presented very pregnant and claiming that they were a man. Not that they were transgender, but that they were biologically male (and also identified as a man). That was a delusion. I don't know why someone believing they are transgender would be a delusion anymore than someone believing they are the gender they were assigned the birth.

 

[sloop]

You can't possibly believe that all four of the traditional bioethical principles are equally weighted at all times. This would mean you are simply paralyzed anytime any of them come into conflict, because after all, they are all equally important always in all circumstances.

Maybe you get around this by saying, well, violations of principles can be of different weights/magnitudes, but this is just equivalent to putting different weights on the principles themselves in different situations. An arithmetic formalism more or less.

You mention not caring about our opinions about the basic premise of your argument. Obviously many people ITT take issue with it. You refuse to engage with the idea that there might be validity in another viewpoint. An analytically inclined sort would wonder about possibly replicating dynamics relevant to these particular clinical situations.

The principles are equally weighted. That does not mean that the analysis of a situation under one principle will always yield a finding of equal weight under another principle. This is not the same as saying that the principles are weighted differently in different situations. You have to analyze every situation under all relevant ethical principles. Only then can you decide what the right decision is, on balance. Not every situation that’s an emergency will yield a result on a beneficence/nonmaleficence analysis that overwhelms that of an autonomy analysis, and vice versa for a non-emergency. The problem with seeing different situations as categorically governed by one principle or another is that it will result in bad decisions.

If there’s an emergency but someone has an advance directive, are you going to disregard the advance directive because “emergency means that we interpret in favor of beneficence/nonmaleficence rather than autonomy?”

It doesn’t matter how many people take issue with my opinion. That doesn’t make them right. And why should I care what people on the internet think about me?

Also, perhaps you should read the paper you cited a touch more closely:

"Refusal to give reasons does not point to incompetence either, although this view has been defended.1 Refusal to give reasons frustrates attempts to assess capacity, but the fact that an ability cannot be assessed does not mean that the patient lacks it."

"However, extending to patients an obligation to discuss their reasons is problematic.7 An assessment of decision-making capacity can include probing for personal elements, such as fears, doubts, and mental abilities. It is an intervention. For competent patients, interventions are subjected to patient consent. There is no compelling reason for a capacity assessment to be considered differently. Of course, this intervention is the one that is needed to determine whether its own refusal is autonomous. But this difficulty cannot be shied away from by giving this intervention a special status. In addition, enforcing assessment of capacity requires forcing the patient to answer questions. If persuasion does not suffice, forcing the patient to answer questions to determine capacity is not an acceptable option."

You literally above say a patient's ability to not have their leg amputated depended on being willing to talk to you, i think it is fair to say you are acting as if there is an obligation for them to discuss their reasons.

None of what you quoted is in conflict with my opinion. I

I never said that refusal to discuss the decision is proof of incapacity. Please tell me where I said that. I said that a patient who won’t talk to anybody about their decision is functionally the same as an incapacitated patient. Maybe this is slightly stronger language than the article uses, but the result is the same. The part of the article I quoted discusses how to analyze exactly the situation we are discussing, and it says the patient should be treated as if they are incapacitated. How is that point ambiguous or modified by the quotes you cite?

The second quote is talking about patients with capacity to refuse assessment. You’re trying to construe this as if the article talks about how it’s problematic to force a person with capacity to discuss their decision and leaves it at that. You’re pretending that the author doesn’t present the antithesis position that allowing patients to refuse evaluation poses risks for incapacitated patients before going on to make the conclusion I originally cited. After the part you cited, the author goes on to say:

“Respecting a request to be left alone from a patient who may be making an irrational choice potentially lessens the protection that this individual could receive. In addition, doing it repeatedly weakens the function of medicine as a safety net. Protecting this function is important. If the risk to competent patients is small, protecting the safety net could require an obligation on the part of the patient to explain the reasons for refusing beneficial treatment.”

“A patient who is competent to refuse treatment would likely be competent to refuse to explain why, if the patient was sufficiently informed about both. If the patient were competent, the patient's refusal to explain would be an informed refusal. The patient could be informed that the unexplained choice could not be viewed in the same way as it would have been if the patient had explained the reasons for it. If it was made clear that this stems from a concern for those who do not have an adequate understanding of their situation, it seems likely that at least some patients would find it reasonable. Giving this explanation would also make it clear that the clinician was not establishing that the patient was incompetent, which could be inaccurate and insulting. Rather, clinicians should make it clear that they are merely too uncertain to be able to follow the patient's stated choice, because it puts the patient at risk. Furthermore, the patient would not be under an obligation to explain the reasons to a specific person. Whoever the patient trusted most could be appropriate.

This position does seem to weaken the presumption of capacity. However, requiring that competent patients explain their reasons does not question the presumption of capacity itself. The burden would still be on the clinicians to do all they could to clarify the patient's capacity, including searching for someone the patient trusts enough to talk to.

The main risk to competent patients, then, is that of having to give reasons to someone they would select themselves if their choices are to be followed. This does not seem to be an excessive burden. Protecting patients who do not have an adequate understanding of their situation can reasonably require that patients who refuse beneficial treatment explain their reasons before their wishes can be followed, when following their wishes would place them at significant risk.”

How is this significantly different from what I have said? I would wager that it is actually you who did not thoroughly read the article . . .

 

[whopper]

I haven't read all of the posts but this phenomenon has several parallels with the Sovereign Citizen movement. This movement (and you should know if it you don't cause you will have patients that embrace this ideology) is that they are their own sovereign citizens unto themselves and for this reason don't feel they have to follow the laws of their state our country.

AAPL has dealt with this and in general considers these people competent to stand trial on this and this issue alone. Of course the person could have additional reasons to consider them for lack of capacity for a trial but on this issue no.


Oversimplifying the issue, but getting to the endpoint, even if a person lacks capacity, there is then the different issue of can you force treatment? Likely not. Even if a person lacks capacity for treatment you can only force treatment against their will if they are significantly dangerous to themselves or others due to the lack of treatment, and lack capacity. COVID while potentially dangerous is not on the level where it's danger level is considered to the point where most judges (I believe) would force treatment.

So whether or not someone lacks capacity, if the treatment cannot be forced, then it cannot be forced.

Off on a different note: I do not miss doing consults in hospitals. 3/4 of them were complete BS. E.g. the provider requesting the consult is really having you do the work they should've done. E.g. patient is on an antidepressant but fine but they ask for a psych consult just in case. You have to waste an hour just cause the doctor didn't want to simply cover the issue themselves. Then other consults the doctor never asked the patient the required minimum before you do a capacity consult such as if the patient knew why it was recommended, the benefits or the risks.

What used to happen in my residency is the resident would then do the benefits vs risks. As a chief resident I pushed the idea that the primary provider should be doing it since 1-we're usually not of the right specialty, 2-the primary provider should've done it first anyways, 3-we cannot speak for the provider on this issue and their logic for doing the treatment may go do a different level of understanding than we knew. So unless the primary provider documented they did the risks vs benefits and explained why the patient needed it we wouldn't touch the consult with a 10 foot pole. Seriously the first week this happened we were able to turn down over 50 consults.

Not surprisingly within days we had several idiot doctors mad at us saying idiot things like "psychiatry is supposed to explain the benefits of the surgery not us!" Anytime a doctor wanted to be an dingus and argue this I kindly directed them to the hospital lawyer who told them that "the chief resident of psychiatry is correct. You as the treatment provider, not psychiatry, are supposed to discuss the risks and benefits of the treatment before psychiatry is supposed to get involved."

 

[sloop]

COVID while potentially dangerous is not on the level where it's danger level is considered to the point where most judges (I believe) would force treatment.

This is highly dependent on where you are. Different jurisdictions have very different cultures and legal processes for this. In some places, this situation effectively amounts to emergency petition for appointment of guardianship (which is sometimes court-appointed through the local health and human services or whatever). In others, it is an emergency application for a judicial order for treatment under a similar paradigm to treatment over objection. In some places, judges give a lot of deference to doctors in these matters, the appointed attorneys recognize the need for treatment and don’t fight you hard, and the hearings seem like more of a formality. In others, the attorneys will fight you tooth and nail and the judges are more rights-focused. I do think that a hospitalized patient with severe symptoms who was rejecting treatments for irrational reasons could get treated over objection in a lot of places.

With regard to competency, I do not understand how a sovereign citizen who is refusing to acknowledge the legitimacy of their detention and prosecution (for instance, believing that their delusional arguments will eventually prevail and they will be freed) meets the Dusky standard.

 

[annoyedpsychiatrist]

Off on a different note: I do not miss doing consults in hospitals. 3/4 of them were complete BS. E.g. the provider requesting the consult is really having you do the work they should've done. E.g. patient is on an antidepressant but fine but they ask for a psych consult just in case. You have to waste an hour just cause the doctor didn't want to simply cover the issue themselves. Then other consults the doctor never asked the patient the required minimum before you do a capacity consult such as if the patient knew why it was recommended, the benefits or the risks.

Or consult for depression, you go and see patient and ask them why they feel depressed "ive been in the hospital two days, i feel depressed being here and feeling sick".

Sometimes they would consult and tell you about the patient and you still cant figure out why they're consulting you because in truth, they dont either and just see a psych diagnosis and immediately consult psych.

 

[whopper]

What's going on here is the psych department doesn't give a frack cause they can use residents as cheap labor to sort out the mess.

What a psych department should be doing is working to curb unnecessary consults. E.g. have a protocol. The provider who ordered the consult needs to write a narrative why there's a consult. It should include more than just a complaint of their medical condition. Also things like, before a capacity consult is ordered the provider must document that they discussed the pros and cons of the procedure with the patient and why specifically the capacity is being questioned.

I've said this before. If you work in a hospital try to get paid per consult. So when they throw bull$**** after bull$**** consult and no one in the hospital (as usual) tries to limit these bull$hit consults you score. Don't feel bad about it either. If anything you getting paid should create the check and balance for these idiots to check themselves before they request a consult. And if they dont' check themselves that's not your fault.

This is highly dependent on where you are. Different jurisdictions have very different cultures and legal processes for this.

While this is true, what will eventually happen is it will go up to the state and federal levels. Once the higher courts bite into this the lower courts are supposed to comply. Of course you could have a realistic situation where the higher level courts already made their decisions but hickville judge who's married to his sister doesn't understand this and make a ruling anyway that flies in the face of the higher courts. Have I seen this happen? All the time.

One of the biggest frustration I have with forensic psychiatry is that I've often times known the law better than the judge and lawyers, and yet all I'm allowed to do is play my role while seeing several other people completely do what I see in medicine inept work.

 

[Sushirolls]

It's not just hickville judges that make poor verdicts out of thin air.
Kumbaya Karen's skirt judicial norms, too.

Their incompetence crosses political bounds, and geography.

 

[whopper]

While in fellowship a local judge asked me to do a competency evaluation and an insanity evaluation in the same evaluation. I told the judge that if I recommended the defendant be found incompetent then there can be no insanity evaluation because then the defendant, if the court followed my recommendation, didn't have the capacity pick an insanity defense.

The judge told me that's how they did this for years, and it was all endorsed by their (quack) forensic psychologist who did this all the time because she could then charge for 2 evaluations but spent the time needed to only do 1 evaluation.

I told the judge and showed him the proof that this is not the way it's supposed to be done and flies in the face of several required rules. He either didn't care or didn't understand.

I'm sure later on that day he went home to his sister and made out with her. Then just a few days later I see another judge do something similar. Just as I see doctors give out benzos without regard, tell patients Ambien is fine long-term and spend 5 minutes with a patient and write up an H&P.

 

[erg923]

I haven't read all of the posts but this phenomenon has several parallels with the Sovereign Citizen movement. This movement (and you should know if it you don't cause you will have patients that embrace this ideology) is that they are their own sovereign citizens unto themselves and for this reason don't feel they have to follow the laws of their state our country.

This is all make believe. We should not be be labeling or even indulging in such nonsense.

 

[hamstergang]

I'm sure later on that day he went home to his sister and made out with her.

What is going on here? This sentence is just weird.

 

[Sushirolls]

Another veiled comment to deride rural communities - with associations of incest. Instead of focusing on the poor professional conduct of the judiciary in local courts being a diffuse issue not localized to rural communities.

 

[smalltownpsych]

Another veiled comment to deride rural communities - with associations of incest. Instead of focusing on the poor professional conduct of the judiciary in local courts being a diffuse issue not localized to rural communities.

One big difference I have seen between smaller communities vs major metro areas is that it is easier to separate the classes of people and hide the incompetence of some of the professionals. In the small towns that I have practiced in it was not always so easy to hide from the poor or the incompetent. Although the dynamic of the good ol’ boy network could also be worse when they all knew each other too. Not a big fan of the elitist metro attitudes either. I remember when my own mother mocked Sarah Palin because she went to some small town Alaska university. Lots of things to mock her about, but talk about elitism. I was a bit offended since I did my own undergrad at CSU Long Beach which is kind of lower down on the food chain. Wow mom! 😂

 

[whopper]

Back in the day when I was a resident, I asked my PD (who pretty much dismissed me and didn't have an answer), that we live in an era where putting people in the paranoid category because they believe "tracking devices," "implants," "sonic-guns" were not yet medical reality.

The problem is now, however, that these things are reality.

What are we supposed to do about this now that these things really exist? Are we supposed to now have a private investigator verify?

Then add to this we have a new type of Schizotypal person who now doesn't grasp healing crystals and UFO conspiracies but delusions that are being backed by US Senators, presidents, Congress..

Even people on our own forum who are professionals have at times more or less backed some stances that years before were no-no territory.

In our attempt to not trying to piss anyone off, maybe we should be putting our foot down and say enough's enough. Media, and our own political leadership is exploiting Cluster A personalities into a new voting bloc.

Add to this COVID was a matter-of-fact mostly unknown until it was already upon us. We really didn't know what we were dealing with and several experts, leaders, pundits pushed their opinions as if they knew what was going on when in fact a health amount of "we're still trying to learn about this phenomenon" might've been a healthier statement.

 

[allantois]

Back in the day when I was a resident, I asked my PD (who pretty much dismissed me and didn't have an answer), that we live in an era where putting people in the paranoid category because they believe "tracking devices," "implants," "sonic-guns" were not yet medical reality.

The problem is now, however, that these things are reality.

What are we supposed to do about this now that these things really exist? Are we supposed to now have a private investigator verify?

Then add to this we have a new type of Schizotypal person who now doesn't grasp healing crystals and UFO conspiracies but delusions that are being backed by US Senators, presidents, Congress..

Even people on our own forum who are professionals have at times more or less backed some stances that years before were no-no territory.

In our attempt to not trying to piss anyone off, maybe we should be putting our foot down and say enough's enough. Media, and our own political leadership is exploiting Cluster A personalities into a new voting bloc.

Add to this COVID was a matter-of-fact mostly unknown until it was already upon us. We really didn't know what we were dealing with and several experts, leaders, pundits pushed their opinions as if they knew what was going on when in fact a health amount of "we're still trying to learn about this phenomenon" might've been a healthier statement.

Wdym? I have some black obsidian sitting on my desk

 

[Ceke2002]

I'm not sure of the rules/system where I live now, but when I was living in Adelaide capacity assessments were divided into 'global capacity' and 'Impaired Decision Making'. For 'Impaired Decision Making' the person has to not be capable of: understanding any information that may be relevant to the decision, including the consequences, retaining such information, even for a short time, using information to make decisions, or communicating the decision (in any way). There are a heap of guidelines to how assessments like this are approached, including making sure questions are open ended and not leading, and that the person is given access to whatever level of information they can reasonably comprehend (so interpreters for ESL or signing deaf folks, information given in a very simplified manner, use of picture cards if that helps, and so on). Under this system I could definitely see some covid deniers being deemed to not have decision making capacity.

In Sydney and Melbourne hospitals they did have covid deniers in the ICU that kept trying to escape because 'they weren't really sick' and 'covid was a hoax, ergo they couldn't be sick in the first place'. They'd make it a few steps, and then collapse for lack of breathing ability, end up back in bed with an oxygen mask on, and the whole cycle would just get repeated from there. I know this is probably the wrong thing to say, but in that case I'd almost want to slap them with an insta!non-capacity diagnosis just to get them to stop tying up nursing resources with their stupidity.

'Global Capacity' is obviously more like when all the marbles have left the building, so to speak. In that case any health related decisions fall to a substitute decision maker of medical guardian.

 

[Ceke2002]

What are we supposed to do about this now that these things really exist? Are we supposed to now have a private investigator verify?

This is something I've sometimes wondered myself. What do you do with a patient who sounds paranoid and/or delusional, but there really are people following and filming them, or planting tracking devices on their vehicle? I remember when I was trying to organise a rally in support of science several years ago, and one of the group members started talking to me about infiltration by parties with vested interests, and manipulation of information, and how he'd peeved some folks off a few years back himself and was now being repeatedly followed and harassed. He sounded like a complete whack job, right up until he provided court documented proof of his experiences and right up until I started experiencing exactly what he'd warned me about. It was pretty eye opening, I mean I was fully ready to dismiss this guy as a total loony tunes and yet he wasn't. So how do you determine the difference?

 

[whopper]

Another veiled comment to deride rural communities - with associations of incest. Instead of focusing on the poor professional conduct of the judiciary in local courts being a diffuse issue not localized to rural communities.

I apologize to rural communities but this type of issue goes on way more in rural communities. The reason being that rural communities have less legal infrastructure, cases of mental illness (not less frequency per population but the population is less so this happens), and less specialists.

But I do not apologize for deriding the judge. And the fact that these types of judges are double digits frequencies and not rare is the part that's not given out in the reality teaching that should be done in residencies.

 

[whopper]

IMHO a lot of this is from the collapse from the media in general in quality and factual information. The media-in-general is exactly what I mean including social media. Many people now use social media or news channels even proven to be unreliable sources of information as their main source of information. IT's now a "believe what you want to believe" is what you believe.

Mainstream media, despite it's faults (and there's a lot of them) were never as bad as social media or Infowars being someone's main source of news.

This deterioration in reliable journalism is spilling over into our field. E.g. a number of people arrested in the Jan 6 insurrection have a previous diagnosis of Schizotypal personality. Again as mentioned this type of person has been now exploited into a voting bloc.