Competence; Dialysis & dementia; 'Futility'; 'Research methods'

2 articles about which I mostly opine on what I wish they said, and a couple more for good measure.1)NEJM recently had a clinical practice review on assessing 'competence' of a patient to consent to treatment The author responds to the question implied by my use of quotation marks around 'competence' above with this:'The terms "competence" and "capacity" are used interchangeably in this article, since the oft-cited distinctions between them —competence is said to refer to legal judgments, and capacity to clinical ones — are not consistently reflected in either legal or medical usage.'I had thought that that distinction was consistently maintained and I think it does make sense to linguistically distinguish between those patients who have been deemed medically and legally to indefinitely lack the compentence to make medical decisions and those who are deemed to lack the capacity to make the medical decision before them - like a delirious patient who needs an operation - without necessarily an implication of the permanence of the incapacity.The article itself is the most basic of overviews and is likely not of interest to the established palliative practitioner, but is a good one for the teaching files.The case that the article references involves an elderly woman with perhaps some cognitive impairment and depression who declines a life-saving amputation. The author notes that the patient likely has capacity to make this decision, but I was left hoping he would discuss what we should do about someone who is incompetent but who can still express wishes about what they want, and who refuses to assent (since they can't technically consent) to potentially life-prolonging medical care. What if the patient was schizophrenic (with active and disabling psychosis) and refusing amputation? What if it wasn't amputation but life prolonging chemotherapy that was indicated? How do we accomodate patient's values/wishes even if they themselves cannot really understand? And what if those wishes/values conflict with what their legal decision maker (guardian/proxy) wants for them? These are issues which I encounter from time to time, and I usually muddle through them with getting second opinions, consulting ethics, and talking talking talking until there's consensus, and the case here would have been a prime example of talking about this.....I've never done a lit search on it: anyone know of any good papers about this?2)Seminars in Dialysis has a discussion about requests for dialysis in severely brain injured or demented patients. It's a practical, chatty overview of the topic, which seems to be directed at nephrologists who don't have much background knowledge of end of life communication and decision making. I was hoping it would address the practice which I've seen occur numerous times & in several locales of nephrologists' decisions about withholding dialysis being the catalyst to family members and/or primary teams to realistically address that someone is dying and implement appropriate terminal care. These situations can happen, for instance, with critically ill severely demented patients or patients with end stage liver disease who are declining despite an escalation of care in the ICU whose care plan gets (dramatically and appropriately) re-defined towards comfort care when the nephrologist, consulted because the patient is in acute renal failure, tells the primary team or family that dialysis is not indicated/they're not going to initiate it because the chances it will help restore the patient to health are negligible. At times this can happen after protracted conflict between the primary team and family about care goals. (And at times of course the nephrologist's recommendations are summarily rejected by the family/primary team/both.)Anyway the article doesn't particularly talk about this, so I'm not sure why exactly I am, other than that I've always been curious to see what the discussion within the nephrology community has been about this. The article does make some very welcome points about advance care planning in dialysis patients including discussing (from the beginning) circumstances under which the patient would not want to continue with dialysis.3)CMAJ has a qualitative study on perceptions of 'futile' care in the ICU It comes from interviews of ICU clinicians (docs, nurses, respiratory therapists) about 'futile' care. A lot of what is mentioned is what one would expect. What struck me was the sense that these clinicians had of their inability to change outcomes in these situations, as well as a lack of institutional support and fear of liability. Not wanting to discount the suffering of patients/families in these situations but it is clear that these are situations which cause a great amount of suffering for clinicians themselves: feelings of inadequacy, impotence, lack of support, and fear."We did not attempt to generate a consensus definition of futile care because we felt that the effort itself would have been futile in view of prior unsuccessful attempts by others in the medical literature."This is not just a little joke - it's true - futility is a concept which is nearly impossible to define in a way that's meaningful for real clinical practice (an appendectomy for lower extremity cellulitis would be a futile therapy but conceptualizing it this way doesn't really help anyone out). Which makes me wonder why we are still talking about it as a medical community because what we're really talking about is the provision of care that a doc/medical team/whomever deems is inappropriate/highly unlikely to help/whatever. Trying to label this sort of care 'futile' helps us emotionally - declaring something futile gets us off the hook in some ways - but it's a divisive word that erases the patient's/family's values. Instead it seems we should be talking about how do we respond to requests for care that are highly unlikely to help a patient? How do we resolve those conflicts? And how do we care for ourselves as we encounter situations in which we feel like we are being asked to do patients harm by providing non-indicated and (in our opinion) needlessly burdensome care?4)Pain has a study about the facial expressions of pain in demented patients (average mini-mental status exam score 16/30), concluding that yes, demented patients reliably demonstrate facial evidence of pain in response to painful stimuli. The study involved, yes, causing these demented patients pain and comparing them to healthy, age-matched controls. When I read the abstract I immediately wondered how they were able to do this study - who consented to have these demented patients subjected to pain? Per the methods:"We took care that only patients with dementia were included in the study who still had legal capacity. After being informed in a slow and simple fashion, which was adjusted to the individual intellectual capacities, subjects gave written informed consent. We also provided instructions during testing as simple as possible and monitored the patients continuously for any signs of undue discomfort (verbally or non-verbally), in which case we stopped testing immediately. Healthy subjects were paid for participation."