Morning Report #3---Another ethics question

IANAD, but I would first ask about why you are asking the patient's relative's permission for testing. Is the patient sufficiently altered that he is not able to consent to his own tests?

If the patient is so altered that you need the relative to act as guardian, then I might be inclined to try explaining why you want to do the test, and also (if there is time) as the relative about their own bad experiences specifically, so that you can show them how this would be different.

Solutions later...issues first. And you can assume those things were done.

IANAD... Maybe these are more general questions than simply ethical, so have patience.
* Can we know if what the relative says about the patient is true (which you could ask of any secondhand information), espc. given perhaps the patient shares the relative's distrust of the medical process? Perhaps the pt does in fact have undiagnosed, or diagnosed and untreated conditions. Despite the normal head CT & no sign of trauma, what accounts for the aphasia & altered mental status? He's too young, I sense, for the kind of dementia that happens in older folks when they have fever & infections, so what accounts for that? Is the relative withholding information?
(would a NASH without encephalopathy still produce neuro signs?)
* If the relative is acting for the pt and chooses to not pursue certain diagnostic tests, how much are you able to do without their consent?
* If the relative is not the legal decision maker for the pt, how will you know if the pt's wishes are being followed?
* Does anyone know what the pt's normal baseline was before the incident?
* If the pt is not in a "life and death" critical condition, how much can you do to convince the relative to allow invasive procedures?
* If the pt turns out to need medication & care after recovery, if his mental state is not normal, who is responsible for him?

I guess a lot of this to me seems like legalities, in terms of decision making & pt advocacy. What would have been different if the person did not have any family contacts?

The one "solution", if that, I can think of is stating the case to the family member that because the pt is unable to communicate his wishes directly (and this may/may not be a temporary condition) you must assume the pt would want to have this sudden and anomalous health incident explored. What if due to the relative's denial of permission, once the pt regained full mental status & could advocate for himself, valuable time was lost & full treatment was now not possible?

I'm sure there's a whole angle or two I'm missing here.

How close was this relative?

I can't imagine wanting medical decisions made for me by my cousins, and I'd probably argue with those made by my siblings...

He's 35. What legal responsibility does this relative have and/or is willing to take for the patient?

Is the patient willing to go along with this?

What would be the answer if there were no close relative found?

I'd say that permission is up to the patient at this point. While he may be having some cognitive difficulties, it doesn't seem that he's delusional or incapable of coming to an informed decision if allowed enough time. It seems likely the relative is out of line.

A couple of questions:

1. Is there any indication of how close a relationship the patient had with the close relative? Were they possibly estranged? Is this a parent? A husband/wife? Are there any other relatives around who might be able to give an opinion?
2. Can you get any more information concerning the prior bad experiences? Has the patient experienced malpractice in the past? Poor bedside manner? Is there any indication (perhaps from other friends or relatives or the patient's behavior) of whether the patient feels distrustful of doctors?

Ok, I'm now going to make two wild guesses about the patient's PMH: 1. He has a history of aplastic anemia or acute leukemia, possibly requiring bone marrow transplant. That might account for the findings and explain why the relative thought he had bad past experiences with doctors. Especially if the hematologic illness occurred during childhood and the relative was a mother or father. BMT is never fun and watching your child go through it would leave one feeling that it was a bad experience almost no matter how well it went or how polite and efficient the medical personnel were. 2. He has been taking some sort of "alternative medicine" preparation, perhaps for a minor illness such as cold which contained something unfortunate like heavy metals that could cause delirium and liver, kidney, and bone marrow damage.

Was an LP done at any point? If the patient is neutropenic, a meningitis could kill him while we're discussing the ethics.

Oops. I didn't actually answer your question.

The ethical issues involved might include:
1. Is the patient competent to make decisions concerning his own medical care? I assume that the answer is no, since a proxy was sought, but it is an issue.
2. Is the relative found the correct proxy? Is s/he the nearest relative? If so, is there any reason to think that s/he is nonetheless not the most appropriate proxy. For example, the patient might have a medical power of attorney arranged with someone else. If anyone from his partner to his letter carrier is the person he designated and willing to act as power of attorney then that person is who should be making the decisions, not the relative. Even if there is no medical power of attorney and the relative is the closest, is there any reason to believe that s/he doesn't have the patient's best interests at heart or know what the best interests of the patient are? For example, an estranged husband or wife might make maliciously bad decisions. A father or mother with whom the patient had not had contact for years may simply not know the patient's current situation and wishes.
3. Is the relative making decisions of sound mind? If not, there might be reason to override the decision s/he made.

If the relative is truly the best proxy, is sane, and has the patient's best interests at heart, I'm not sure what the next step is. If the patient's mental status were clear and he had refused the biopsy it would be clearly unethical to perform it, regardless of whether to do so would be in the patient's best interests medically or not. But if a proxy refuses, especially a proxy of uncertain quality, I'm less certain.

I'd suggest as a first step looking for other relatives, having a family meeting with a patient advocate involved, and exploring the relative's reasons for refusing further and trying to explain the current situation to him or her in more detail.

Dianne -- interesting questions you bring up, but... at what point does the patient become incapable of making decisions for himself?

Recently, my father was in a situation where he was drugged due to pain and a doctor was questioning him about his condition. My brother and I were present, but reluctant to say anything that would make my father appear incompetent to make decisions about his health care.

In the case PalMD describes, I think the ethical problem stems around the patient's cognitive abilities. And if it is established that the patient doesn't have the "presence" of mind to legally consent, how does a doctor determine who does?

Merely being a relative is not quite enough, IMHO.

at what point does the patient become incapable of making decisions for himself?

It can be a tricky determination. Obviously, an unconscious, incoherent, or psychotic patient can't make his or her own decisions. In uncertain cases, such as this, doctors will often call a psychiatric consult to determine competency.

Cynically, the question often arises first when the patient starts refusing interventions...If a mildly demented patient with an acute medical condition comes into the hospital, smiles when the planned interventions are explained, and signs any forms put in front of them...my guess is that nine times out of ten no one will question his or her ability to consent. But if he or she refuses, then the issue comes up. I'm not condoning this behavior, just saying that I think it does occur. Not sure what to do about it. Requiring screening for competency before allowing someone to agree to medical care would be overly complicated. And do perfectly competent adults understand what they're agreeing to when they agree to medical treatment? Probably not always...I'm not sure what to do about that either. At least not on a systems level. (Better communication between the doctor and patient is always a good start, but how to promote that?)

In this case, the patient clearly did not have the ability to give or withhold consent. He was incompetent. The relative lived with the patient and seemed to be, based on that, a reasonable surrogate. There were no advanced directives.

The reason that the relative gave for refusing permission, personal adverse experience with doctors, doesnât have sufficient basis in this particular patientâs needs to be valid. This relative is not acting in a way that a competent guardian or surrogate needs to act (i.e. act in the patientâs best interests).

If the patient is sufficiently incompetent that he needs a health care surrogate, and this relative is not acting as a competent surrogate, then the hospital needs to have a competent surrogate appointed by a court.

A competent adult can refuse any medical care for any reason or no reason at all. One question in this case seems to be whether a proxy has the same latitude or if a better reason is required for refusal? (Particularly in the absence of any clear evidence of the patient's desires.)

I think a proxy has to either be following the patient's desires (expressed while the patient was competent), or has to follow the "reasonable person" standard.

In the case of witholding treatment from a diabetic child, the child has never been competent, so the child cannot have actionable desires that are different from the "reasonable person" standard.

There needs to be a higher standard of evidence for a proxy to deviate from the "reasonable person" standard. i.e. a signed health care proxy form. Without pretty good documentation to that effect, I think a deviation from the "reasonable person" standard is not something that the hospital can accept.

Loss of higher brain function is important. I'm no ethicist, but I would try to explain to the relation that, given the patient's apparent mental decline, finding out what's causing this is of importance and is very time-sensitive. That, if the condition is not diagnosed and treated his relation may either suffer permanent brain damage or death. If he still won't budge, and there's no other way to get at the data required, then I would feel compelled to do the biopsy now and apologize later. There comes a point where the niceties of ethics have to take a back seat to keeping the patient alive.

Lots of you are hitting on the right stuff. I've assumed for the sake of argument that the patient is incompetent by the definitions we usually use, that is he doesn't understand enough to give or withhold consent.

A surrogate decision maker can be anyone, but there are laws in some states (such as Illinois). But a surrogate must exercise "substituted judgment", that is, must be able to make a decision congruent with the patient's previously stated wishes or beliefs. If a surrogate is unable to subsume their own wishes or does not know the patient well enough, the should remove themselves.

Unless a patient has previously made explicit that they would forgo life-saving care, we usually assume they would want it.

In this case, the surrogate does not appear to be making decisions using substituted judgment and should be removed as a surrogate. It is often impolitic to do this and is best to turn the surrogate into an ally, if possible.

If no proper surrogate is available, it can be assumed that the patient would want essential care, and in this case, the doctors feel that the bone marrow examination is essential. This can get rather grey for other procedures and situations.

I'm not a doctor, but I do have the same model cane which Gregory House used in season four. . . You really don't want my opinion on questions of medical ethics. :-)

Ok, now that we've done the ethics, what's the diagnosis?

Dianne, a minor quibble: it is not true that a psychotic patient cannot make their own decisions. If a psychotic patient understands the risks/benefits/alternatives to a procedure, and is able to clearly express their decision, then they have capacity to consent/refuse even if at the same time they report hearing voices from their alien overlords telling them to avoid dairy products.

If, however, they are refusing an LP (for example) because of a delusional belief that it will be used to plant a microchip in their spine to control their movements ... they may lack capacity because they cannot realistically appreciate the low level of risk.

Regarding the issue of evaluating capacity with refusal of care but not with acceptance: there is also a concept of *threshhold* of capacity required for a decision. Someone who wants a very appropriate and indicated treatment doesn't need much capacity to accept it. A relatively psychotic or intellectually impaired person can understand "If I don't get the appendectomy I could die, and if I do I will likely do well, so I consent." However to refuse this would require a much, much higher level of capacity: even a very intelligent college professor who refuses an appendectomy may not have capacity if her reasoning is illogical: "I don't want to die but I'm just scared of surgery so I don't want the appendectomy."

Similarly, it takes a lower level of capacity to refuse a procedure recognized as dangerous and of dubious efficacy. And a higher level of capacity to consent to such a procedure.

He's 35 ... if he's mentally incompetent enough that you are asking for permission, forget the relative (unless they have a medical power of attorney) and go for a court order and a court-appointed surrogate.

If the surrogate has a medical power of atty and is refusing tests because of their OWN bad experiences, they aren't making decisions based on what the patient needs. Get rid of them.

Eeps! Tsu Dho Nimh's comment just made me realize that I'd completely misread the post! I thought that the relative was referring to the patient's previous bad experiences with "doctors and tests". If that had been so, then the relative might well have been exercising substituted judgement. For example, suppose the patient had gone through a severe illness in the past, such as aplastic anemia requiring transplant. He may have said to his relative, possibly repeatedly that if it ever came back he'd rather just die peacefully than be subjected to all that again. In which case, the relative's statement would have been entirely reasonable and in line with the patient's wishes, if a bit under-clarified. If, as is the case, it is the relative's bad experiences that are making him refuse the testing then he isn't acting in the patient's best interest or using substituted judgement and isn't an appropriate surrogate.

I'm not sure I have anything new to add, but I fully agree with Tsu Dho Nimh. The relative is clearly acting out of misplaced and overgeneralized fear and distrust that may or may not even be applicable to the patient's situation.

In other words, it's one thing if their concerns are being brought up because they do not want the patient facing a similar situation to the one they faced, but quite another if their fears resulted from a completely unrelated experience and then grew into distrust of all doctors' advice. (Does that make sense?)

@15 - Blake, is that the cane with flames on it? Where did you get it?

From here.

If I understand the discussion correctly thus far, then the decision of the surrogate is only accepted if he/she makes a decision that corresponds to what the patient's doctors think is best for the patient. So, what's the point of even asking the surrogate if the outcome is already guaranteed?

I can well appreciate that the personal biases of a proxy, especially not one directly named by the patient, should not directly affect the patient's care and well being. It doesn't seem "fair" that someone doesn't get better because their proxy is afraid of medical procedures. But that seems a little bit careless also. If the doctors know best what the patient needs done, then asking the surrogate and then rejecting the answer is akin to not asking at all.

Just a thought. Don't hurt me...

the decision of the surrogate is only accepted if he/she makes a decision that corresponds to what the patient's doctors think is best for the patient.

This sort of thing is always a danger. I remind my charges that ethics are not a tool to make someone do what you want but to analyze a problem.

In this case, what may cause providers to invalidate the proxy's decision is the way the decision was arrived at (the proxy explicitly stated that the decision was based not on the patient's preferences but his own) and the outlier quality of the decision (most reasonable people would want the intervention, and without some clear reason from the proxy, it sounds nuts).

Kitten : the point is that as far as we know, the proxy's objection to the bone marrow biopsy does not stem from the patient's own objection and is therefore not fulfilling the patient's wishes but those of the proxy.
As a further example: let's say I'm a non-believer, but my nearest relation is a Jehovah's witness. I am found in the street bleeding from a head wound and unconscious.
Taken to the nearest emergency department, the attending then decides I need a blood transfusion. however, my relations have arrived, and insist that I not be transfused, stating that their religion objects to it.
So, what happens next ? What does the doctor do ?
In my world, he overrides the JW relatives objections because he has no evidence that I am also a JW.

Pal, the presenting illness is loss of consciousness and the key physical finding is a persistent cognitive deficit. This hasn't been very clearly described, but it apparently renders him incompetent to determine his own care and thus goes beyond "memory problems." I wouldn't focus on the cell counts. He needs a neuro workup. Potential etiologies here include seizures, subacute meningitis, and other causes.

As to the ethical challenges, you've got a person who presumably functioned well until recently and there's no evidence that his disease may not be treatable once diagnosed. Some of the potential conditions could be fatal. A spouse or legal guardian has the right to determine treatment, but more distant relatives merit consideration not authority. If you believe the relative's position puts the patient at risk, you should have him seen by a neurologist to verify his incompetence and then institute a court proceeding to procure a neutral guardian.

Since the case doesn't represent a real, unique patient, I simply asserted for the exercise that the next important study was a bone marrow biopsy. I didn't design this one for a typical CPC.