My good friend Al Cichon writes:
Dr. Keller – would you consider a discussion of balancing the autonomy of patient decision-making and the risk to the facility for not providing appropriate care.
1. Individual is on disability but wants to sign a ‘waiver’ of responsibility so he/she can work
2. Diabetic (NIDDM) individual that wants to refuse diet and be placed on insulin so he/she can eat what ever they wish
3. Individual with a comminuted jaw fracture – cut wires on episode of nausea – now wants regular food despite oral surgeon advising limited jaw movement
Documentation of appropriate exam and advice to the individual is, of course, the foundation of addressing the issue – but do you allow the 100% (physically) disabled person work; allow the diabetic to sign a refusal of the diet & prescribe insulin; give the individual with the broken jaw (who is asking for more hydrocodone) a regular diet?
I believe your expert ability to address these thorny issues will help us all
Thank you for the kind words, Al! The issue you highlight is indeed a thorny one—when a patient wants to refuse strongly recommended medical care. Sometimes these are true refusals, meaning the patient understands the medical intervention being offered and truly does not want it. More often, though, such refusals are a form of manipulation to get something else that the patient wants. I would like to address these two scenarios first and first and then discuss your three specific examples.
Inmates have the right to refuse medical care—even important medical care.
When people go to jail/prison, they lose the ability to make many everyday decisions. They no longer can wear anything they like; they have to wear jail togs. They no longer can eat whatever they like; they have to eat the food the jail serves (plus a limited commissary). What they can read, who they can see (and when)—all of these decisions are made by someone else. It is almost as if inmates have regressed into being children again. It is tempting to think that they have lost all of their rights to choose, and that we, like parents of small children, can overrule any of their medical decisions that we think are bad ones. This is a serious mistake.
And it is not true, of course. Inmates do not lose their right to make their own medical decisions. They may decide to come to dental clinic—or not. If the dentist wants to pull a tooth, they may say “No.” They may decide to take their prescribed medications—or not.
However, refusing proffered medical care is not as simple as just saying “No.” For a refusal of medical care to be valid, four conditions must be met, whether the patient is in prison or in a community clinic:
1. Capacity. Does the inmate have the mental capacity to understand what is going on?
2. Informed. Has the patient been fully informed of the possible consequences of his refusal? Do they understand?
3. Reversibility. Refusals of care are not forever things. Patients may change their mind at any time.
4. Documentation. Each of these points must be appropriately documented as well as the reason the patient gives for the refusal.
Let’s consider each of these in more detail.
Capacity. Does the patient have the mental capacity to understand what is going on?
Most of the time, capacity for refusal is obvious. One patient is a sober, functioning adult. This is the case with most of our patients who are refusing medical care. They are looking us in the eye, having a normal interactive conversation and clearly are fully sentient.
Another patient is unconscious. This patient clearly does not have the capacity to refuse medical care. However, medical practitioners can still give medical care to this unconscious patient if the medical need is urgent and immediate. I don’t need a signed consent form to defibrillate an unconscious patient! The consent is assumed if the need is urgent enough.
Capacity is trickier when the patient is refusing medical care but is intoxicated, demented, psychotic or otherwise partially incapacitated. In these cases, the practitioner must make the best decision she can based on the degree of mental impairment and the urgency and immediacy of the medical need. Sometimes, we may act against the patient’s wishes (For example, see my article about appropriate use of Involuntary Chemical Sedation). Sometimes the courts must decide the issue, such as psychiatric cases. And sometimes, we just have to wait for the patient to sober up and ask again later when we know they have capacity. More on this later . . .
Informed. Has the patient been fully informed of the possible consequences of his refusal? Does he understand?
To be fully informed, patients must be told of the possible harms of their refusal but that is not all. Patients must also understand the expected benefits of the therapy, the potential harms of the therapy (like side effects) and what alternatives there are. This seems like a lot, but in actual practice, it does not take that long.
Besides, this is a conversation we ought to have even when the patient is not refusing, but commonly do not.
As an example, let’s take the case of one of my patients who refused to take any medication for his seizure disorder. His rationale was that he did not like the side effects of the medications he had taken in the past and since he only had seizures once every six months or so, he would rather have an occasional seizure rather than put up with being sedated.
This patient needs to be told of the possible consequences of this refusal (falls, injury, airway compromise, etc) and that there are newer seizure medications (like Keppra) that he has not tried with fewer side effects. If he still refuses (and he did in this case), so be it. We document the conversation and go to the next step:
Reversibility. Refusals of care are not forever things. Patients may change their mind at any time.
A common mistake made by health care providers when their patients refuse medical care is to treat the refusal as a permanent, unable-to-be-changed decision. Not true! And this is critically important. Patients have the right to change their minds. And in fact, we should want them to!
Besides being told about the possible consequences of a refusal of medical care, every patient should also be told that they may change their mind at any time and to let us know if they do.
Besides this, there are many circumstances when we health care providers should ask again about a medical refusal. For example, a patient may refuse medical care when he is drunk but be more rational when he sobers up tomorrow. I had a renal patient once who told me he would not allow any dialysis as long as he was in jail. “I don’t care if I die,” he said. But he was still intoxicated during this rant! By the next day, he was sober and allowed us to take him to the dialysis center.
It is almost always a good idea to inquire about medical refusals after a period of time. How long this period of time should be depends on the urgency of the therapy. In the case of the dialysis patient, it was the next day. Many schizophrenic patients are ambivalent in their decision-making, and so I may ask them if they will take their meds again in an hour. If a prison patient is refusing statin therapy for his cardiovascular risk, I may not re-ask about the refusal until his yearly chronic care clinic visit.
Documentation. Each of these points must be appropriately documented as well as the reason the patient gives for the refusal.
Probably the most common mistake made by medical providers when dealing with refusals is not documenting the encounter adequately. The documentation usually does not have to be very long. I usually document the reason the patient is giving for refusing, plus one sentence for each of the three areas noted above:
Mr. Smith refuses to allow me to do an I&D of an abscess on his leg. He states he thinks he is going to get out of jail after court today and will have the abscess taken care of by his regular doctor. He understands the risks of refusing the procedure at this time. If he is not released, I will re-evaluate the abscess tomorrow.
It took me 60 seconds to write that out (I timed it).
Sincere refusal—or manipulation?
Of course, the cases that Al presented are no examples of sincere and rational refusals such as Mr. Smith. In these cases, the inmates appear to be manipulating the system to get something they want. The critical difference in these cases is that the inmates want Al to give them something that Al does NOT think is legitimate medical therapy. They are not refusing a medical treatment that Al is recommending; they are demanding a medical therapy that Al does not think is appropriate.
I have run across every one of the situations that Al wrote about. However, the most common type of this type of manipulation I run into is the request/demand for a medication that I do not want to prescribe—such as gabapentin (See Taming the Beast–Gabapentin.
Dealing with attempts at verbal manipulation like this requires verbal skills that I call Verbal Jui-jitsu (and my friend Bill Wright calls Verbal Aikido). These are not intuitive to many medical practitioners and so I will discuss the principles of Verbal Jui-jitsu in more detail in a future JailMedicine post.
However, the core insight in Al’s three cases is that we do not have to give any patient medical therapy that we think is inappropriate. I don’t care that the first inmate wants to revoke his disability status; if I don’t think he is medically able to work, I am not going to certify that he can. That is my decision, not his. I’m not going to allow a patient with a fractured jaw to ruin the surgical repair by allowing him to have inappropriate food. Whether to prescribe insulin is my decision, not the patient’s. And really, the decision to prescribe insulin is not based on whether patients will be compliant with their diet. I assume that many of them won’t. In fact, even if diabetic patients eat a diabetic tray, I assume that many will continue to eat crap from the commissary.
The second core principle of Verbal Jui-jitsu relevant to these cases is that there is safety in numbers—the more medical practitioners agree on a decision, the stronger and safer the decision is. So if these were my cases, I would make sure the inmates know that I am not the sole “Decider” in these cases.
The Three Cases
In the case of the broken jaw, I am not the one who ordered the soft diet—the oral surgeon did. So I would call the oral surgeon and tell him that the patient’s wires had to be cut due to nausea and that the patient now wants a full diet. I suspect that the surgeon will either re-attach the wires (problem solved) or say “No Way” to a full diet until he sees the patient (again problem solved).
In the case of the patient on disability who wants to work, the answer depends on who granted the disability status. If the patient has formal Federal disability benefits and is receiving disability payments, well of course I can’t rescind that. If I myself had previously placed this patient on an “unable to work” status, and I truly believe that he should not work; then I would treat this request like an appeal of that decision. As a response to the appeal, I would discuss the case with other people who know the patient and had a stake in the outcome, like other practitioners in the jail, the Director of Nursing, the Health Services Administrator, and maybe even the Jail Commander. I suspect that all would agree on the correct medical course of action. I would then tell the patient the decision (and document this, of course).
Finally, there is the case of the Type 2 diabetic patient who is refusing a diabetic tray. That is his right. I assume that many of my diabetic patients sabotage their diabetic diets anyway, by eating commissary crap food. However, he mistakenly believes that insulin will allow him to eat anything he wants and still be healthy. The issue here is that this patient has a serious misunderstanding of how Type 2 Diabetes works!
I had a similar Type 2 DM patient in my jail that told me “My (outside) doctor told me that I could eat anything I wanted as long as I took my diabetic medication.” This is so wrong as to almost be medical malpractice if the doctor (really a PA in this case) actually said it.
Insulin cannot compensate for diet in Type 2 Diabetics because they are all insulin resistant. This means, of course, that insulin does not work perfectly well with them. The flip side of insulin resistance is that Type 2 diabetics are carb-sensitive. Sugar and junk carbs will increase their blood sugar in an outsized way compared to non-diabetics. Since they are also insulin resistant, insulin can NOT fully compensate for this. The only real solution is to reduce the carb burden that the insulin has to work on.
Because of this, the decision to start insulin in a Type 2 diabetic should be based on the length of time they have had their disease and their A1C level; not on a vague promise to keep to their diet.
The real issue in this case is not his request for insulin, but this refusal to adhere to a diabetic diet. He needs to know that insulin is not a “cure” for diabetes and will not compensate for eating crap food. He also needs be informed that the possible consequences of eating junk carbs can be blindness, impotence, amputations, strokes, heart attacks, etc. He needs to know that the best therapy for Type 2 diabetes, by far, is to stop eating crap (and what crap is), to exercise regularly, and to lose a bunch of weight. This would be far more effective than insulin ever could be.
As we discussed, this conversation should be documented. And his refusal should not be considered to be a “forever” decision. The whole conversation on the importance of diet and the consequences of refusing to eat right should be repeated and documented each and every Chronic Care visit.