I saw a lot of surprise on social media about the Alzheimer’s Society report including that data that only 45% of patients and their caregivers are informed of their Alzheimer’s diagnosis. News reports went so far as to put out the idea that physicians are under no legal obligation to inform patients of their diagnosis. See for example here at US News and World Report.
One of the things that surprised me when I entered bioethics a decade ago was that some issues we may have thought belonged to the “dark ages” persist as practices—or may even continue to be live controversies—today. Trainees learning pelvic exams with patients who have not consented to be so “used” but are unconscious. Withholding difficult diagnoses or prognoses.
Someone is always willing to say that busy doctors don’t have the time for X. This is almost never a real answer: time is a proxy for the importance placed on something or how difficult one finds something. If doctors literally didn’t have the time to communicate a diagnosis, they would have to take down their shingles: the practice of medicine would be impossible.
I can think of some things that might be meant by the claim in the press that there’s no legal requirement to inform patients of their diagnosis. One might be that physicians can invoke “therapeutic privilege”—make the judgment call that telling a patient their diagnosis would do more harm than good. Although this is a real thing in law, its scope is narrow…to non-existent. The law folks I know who teach here (in Canada) teach that there is no Canadian legal ruling where this was successfully invoked such that physicians can realistically rely on it. It’s only a theoretical possibility. It doesn’t cover the case where a doctor thinks it would be upsetting to patients to learn their diagnosis.
Someone might say there’s no requirement for patients to be informed of a diagnosis because informed consent (which is a common law or a statutory requirement, depending on where you are) is for agreeing or refusing to undergo a medical procedure, and not a general requirement to tell patients things, and if someone further explained that patients the legal mechanism for redress when this right is violated is very specific—patients have to sue, and show that they were harmed by not having the information, because it led them to make a choice they would not otherwise have made if they’d been properly informed. With various other standards relating to the degree of proof etc.. This is a very high standard for patients to meet. (For those of us keeping ethical-theory-scorecards, this almost seems to enshrine a consequentialist rather than a deontological perspective on truth-telling.) It more or less means that the legal mechanism of informed consent is very weak in relation to its intended goals—which arguably might include fostering patient autonomy and addressing the vulnerability of patients in the power imbalance they find themselves in under the care of medical specialists.
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But you’d only translate all that into the news soundbite we heard if this were all explained very quickly (who has time, anyway, right?), and then the writer tried to sum it up in a short sentence. Because underneath this all is the broad intent of the law, which is not to grant physicians the right to keep from patients facts about them that are materially relevant to the decisions they have to make, but to encourage candour about the things that patients need to know in that relationship. And underneath this all is that patients and their caregivers do have to make treatment decisions (not to mention other life decisions), and that their diagnosis (and prognosis etc.) is undoubtedly material to those decisions.
Someone might also say this if they half-understood an explanation of how patients may set the terms of how much information they want, and who they want it delivered to (themselves, or a family member or trusted close friend). Even there, the possibility for patients with capacity may be more an ethical one than a legal one—CMPA, the Canadian physicians’ source of legal advice, tends to tell physicians (so residents tell me) that they should tell the patient everything material to their care whether patients want to know it or not. This could be an accurate representation of CMPA’s stand or not: they may simply be emphasizing to residents that it’s a weighty matter not to inform patients of something, and that they should be cautious of what may be only an apparent refusal of information. In any case, legal permission for withholding information in this case (if there is any), and the ethical framework that would permit it, says that patients set the terms on this one, not that physicians decide whether to tell patients or not.
(And if patients don’t have capacity, which is a real issue with dementia, of course, they need a substitute decision-maker who is told.)
There is a chance—and I haven’t looked into this—that the lack of “truth-telling” pertains to dementia in its earliest stages, where there are real concerns from those who care for the elderly about medicalization. This can shade over in ways difficult to sort out into a grey area about the timing of diagnosis, and a harm-benefit judgement call about when it’s helpful to communicate a diagnosis. Diagnosis is less black and white than we imagine it to be. Nothing in the news reports suggests that that’s the issue, but it’s worth keeping in mind that apparently widespread less-than-optimal behaviour can in some cases be a kind of conscientious objection.
One of the things that I thought was just a stereotype of medicine—but that I learned is still an aspect of medicine that the profession is struggling with—is its focus on cure over care. So many go into medicine wanting to fix people. I could write for another hour on all the ways the profession works to undo the damaging effects of this basic bias towards wanting to fix things, rather than wanting to manage what cannot be fixed.
I do suspect it has something to do with early stages of dementia and when is it helpful to share a DX. A client of mine, 90 with post concussion syndrome pushed and pushed her neurologist on the dementia topic. Finally he said,”You do have very mild dementia. But I don’t even like to use that word in your case. Go out. Live your life without concern.” She left and obsessively repeats over and over “I have dementia.” Her fears have come true. She knows she doesn’t think as clearly as she used to. She knows short term memory is a problem. Still the diagnosis hasn’t helped her although she felt compelled to get it.
Hi Cynthia,
No diagnosis is a neutral description–whether a mild abnormality should be a diagnosis is a very serious question.
There are different ways you can think through the kind of phenomenon you’re describing. It can suggest that the kind of harm we are doing by communicating mild abnormalities is not connecting in a useful way to prognosis, treatment, or planning/management more broadly. That’s the question about whether to medicalize the mild abnormality into a diagnosis.
Typically a diagnosis does come with treatment decisions–and life decisions. I wonder what the balance is between people who receive a diagnosis and respond to it with worry and (for cognitive conditions in particular) self-confirming behavioural decline, and people who do not receive a diagnosis and miss the chance in their remaining time of cognitive competence to cope more effectively with what that diagnosis means for them—take the holiday they’ve always wanted, sell the house and move into assisted living, understand the changes that are happening in their intimate relationships, do their estate planning, including advance care directives.
There’s not really good evidence of is that healthcare providers can guess their patients’ preferences when it comes to receiving information. That’s a real problem for any desire to “do good” by deceiving or by withholding information–it puts the onus on the provider to decide who will be harmed and who will be benefited by having full information. They can take specific approaches to finding out how much information patients want, and what supports they need to deal with the information they do want to receive.
-Lynette