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By the end of postgraduate training, using a patient-centred approach and appropriate selectivity, a resident, considering the patient’s cultural and gender contexts, will be able to...
Dementia Key Feature 1a: In patients with early, non-specific signs of cognitive impairment: Suspect dementia as a diagnosis. Skill: Clinical Reasoning Phase: Hypothesis generation, Diagnosis Key Feature 1b: In patients with early, non-specific signs of cognitive impairment: Use the Mini-Mental State Examination and other measures of impaired cognitive function, as well as a careful history and physical examination, to make an early positive diagnosis. Skill: Clinical Reasoning Phase: Diagnosis Key Feature 2: In patients with obvious cognitive impairment, select proper laboratory investigations and neuroimaging techniques to complement the history and physical findings and to distinguish between dementia, delirium, and depression. Skill: Clinical Reasoning Phase: Investigation Key Feature 3: In patients with dementia, distinguish Alzheimer’s disease from other dementias, as treatment and prognosis differ. Skill: Clinical Reasoning Phase: Diagnosis Key Feature 4: In patients with dementia who exhibit worsening function, look for other diagnoses (i.e., don’t assume the dementia is worsening). These diagnoses may include depression or infection. Skill: Clinical Reasoning Phase: Hypothesis generation Key Feature 5: Disclose the diagnosis of dementia compassionately, and respect the patient’s right to autonomy, confidentiality, and safety. Skill: Patient Centered, Communication Phase: Diagnosis, Treatment Key Feature 7a: In following patients diagnosed with dementia: Assess function and cognitive impairment on an ongoing basis. Skill: Clinical Reasoning Phase: Follow-up, Physical Key Feature 7b: In following patients diagnosed with dementia: Assist with and plan for appropriate interventions (ex: deal with medication issues, behavioural disturbance management, safety issues, caregiver issues, comprehensive care plans, driving safety, and placement). Skill: Clinical Reasoning, Patient Centered Phase: Treatment Key Feature 8: Assess the needs of and supports for caregivers of patients with dementia. Skill: Patient Centered Phase: History Key Feature 9: Report to the appropriate authorities patients with dementia who you suspect should not be driving. Skill: Professionalism, Clinical Reasoning Phase: Treatment Key Feature 10: In patients with dementia, look for possible genetic factors to provide preventive opportunities to other family members, and to aid in appropriate decision-making (ex: family planning). Skill: Clinical Reasoning, Patient Centered Phase: Hypothesis generation, History Infections Key Feature 4: Look for infection as a possible cause in a patient with an ill- defined problem (ex: confusion in the elderly, failure to thrive, unexplained pain [necrotizing fasciitis, abdominal pain in children with pneumonia]). Skill: Clinical Reasoning Phase: Hypothesis generation Pneumonia Key Feature 1: In a patient who presents without the classic respiratory signs and symptoms (ex: deterioration, delirium, abdominal pain), include pneumonia in the differential diagnosis. Skill: Clinical Reasoning Phase: Hypothesis generation According to the UpToDate article "Evaluation of cognitive impairment and dementia," "Most patients with dementia do not present with a complaint of memory loss; it is often a spouse or other informant who brings the problem to the clinician's attention. Self-reported memory loss does not appear to correlate with the subsequent development of dementia, while informant-reported memory loss is a much better predictor of the current presence and future development of dementia. Nevertheless, family members are often delayed in recognizing the signs of dementia, many of which are inaccurately ascribed to 'aging.'" In other words, primary care clinicians need to maintain a high index of suspicion as patients who may be in an early phase of dementia may be unlikely to present for medical care for cognitive concerns. I do this practically by assessing how my elderly patients are functioning as part of my routine social history screen. Once I have picked up on any questionable or obvious impairment in functional capacity, I perform a focused history (including a psychiatric history) and physical examination (including a mental status examination as well as a neurological screen). This initial assessment is particularly important to rule out the two common dementia "mimics:" delirium and depression, each warranting completely different approaches to management. Delirium is an acute cognitive disturbance secondary to an underlying medical insult that requires an urgent medical workup, and can be screened for using the Confusion Assessment Method, as outlined below. If I make a diagnosis of delirium in the office, I am sending the patient to the ED for a rapid workup that includes blood work and other investigations, sometimes including neuroimaging, unless there is an underlying cause that I can quickly assess and treat from the office (see an algorithmic overview to the treatment of delirium, per UpToDate, below). There can only be more than one thing going on, so the precipitant would need to be very clear from the assessment and I would need to feel confident that there is a low risk for a second reversible precipitant. Delirium is associated with higher morbidity and mortality rates, the latter of which raises true urgency about the situation.   If the patient's presentation is, on the other hand, not in keeping with depression or delirium, I then book the patient in to see me for a formal assessment of their cognitive functioning with a Mini-Mental State Examination. This is one of the more coarse but highly standardized cognitive assessment tools. If they score well on this, I proceed to performing a MoCA, which is a more sensitive test for mild cognitive impairment. I also ask for permission and obtain collateral information from other members of the household or family. If there is indeed substantiated evidence of cognitive decline on formal cognitive testing, I proceed to obtaining relevant investigations, mostly to assess for reversible causes of cognitive decline. This includes the following labs: complete blood count, glucose, creatinine, electrolytes, calcium, albumin, urinalysis, liver enzymes, vitamin B12 level, thyroid stimulating hormone, syphilis ELISA immunoassay, and HIV testing. I obtain a head CT (or brain MRI) for patients with early-onset cognitive impairment (<60 years old) or brisk cognitive decline (progression to dementia in less than 1 year from onset of cognitive impairment), or if information on history or physical exam suggests focal or vascular pathology. Particularly young patients who display evidence of cognitive decline are atypical and warrant a more exhaustive workup for reversible causes of dementia along with referral to a dementia specialist and access to a memory clinic, and as the Fourth Canadian Consensus Conference on the Diagnosis and Treatment of Dementia recommends, they preferably also have access to genetic counselling and testing. Also consider the impact this may have on their functional life well before retirement was likely expected. This is in contrast to patients who present with the classic late-onset and gradual decline of Alzheimer disease who are so unlikely to benefit from exhaustive investigations that doing so may be over the top for everyone involved.
Now I've begun to separate out Alzheimer dementia from the other causes, and this is an important concept once you have made a diagnosis of dementia and are moving on to what you can do to manage the disease. Alzheimer dementia is the most common form of dementia, and there are medications that are available that can provide benefits, albeit small ones, on cognitive functioning. Although these medications may also be tried for patients with a few other forms of dementia (such as vascular dementia, dementia with Lewy Bodies, and Parkinson disease dementia), the evidence is really most in favour for their utility in Alzheimer dementia. It is also important to distinguish Alzheimer dementia from others because of the typical gradual decline these patients and their caregivers suffer from, and the dedicated supports that can be offered such as may be offered through the Alzheimer Society of Canada. Beginning conversations early and planning for future times when abilities to care for the patient become more and more challenging can never start early enough. Given the nature of the bad news that must be broken to patients, it is important to share the diagnosis with them and their loved ones in a thoughtful and compassionate way, preferably early enough while the patient still has the ability to be self-autonomous (i.e., still having the capacity to consent). This means that disclosing a diagnosis to the patients' family members or other caregivers would be done only with patient consent, usually followed by a family meeting. It is important that caregivers participate in this shared understanding as safety concerns may become critical, and it is a team effort to be conscientious when a decline happens to the point that activities such as driving must be limited in order to protect the patient and others. This is often very challenging for everyone involved. Being mindful to respect all parties' wishes often takes compromise and ultimately deciding what your bottom line is in terms of when to limit patient autonomy in the interest of protecting safety. It is important to continue to reassess functional and cognitive abilities on an ongoing basis to be able to anticipate when interventions are needed. Cognitive abilities can be assessed using standardized screening tools such as the MMSE, while functional abilities are often captured on assessment of the patient's ability to perform basic and instrumental activities of daily living (outlined at the end of this post). As the disease progresses, there may need to be changes in medications, interventions to minimised the impact escalating behavioural issues including safety concerns such as driving* or wandering, strategies to address caregiver burnout and ensure they are supported as much as possible, provision of ongoing primary care for general health and wellbeing, fall risk assessment workup as indicated including an assessment of gait and balance, and consideration for more formal supports in the community or considering a move to residential care. Providing all stakeholders with as much time to reflect on decisions allows more time for thoughtful decision-making in each of these domains. If patients demonstrate they no longer have competency to consent when it comes to the management of issues that go along with this disease process, deeming them incapable of specific decision-making domains and then deferring to the substitute decision maker is the next step. A substitute decision maker that is well-informed regarding what the patient would likely want as the disease process continues is apt to make better decisions that respect the patient's right to self-determination. Again, the earlier the planning can happen when it comes to a diagnosis of dementia, the better the opportunity for patients to plan for the future when they can no longer speak for themselves. Some patients and family members may voice an interest in genetic testing. Although this is not typically done given the dearth of disease-modifying treatments or targeted strategies for prevention, consider referring patients to a Genetic Counsellor to explore this request. When patients present wanting assistance with interpreting the results of genetic investigations, such as may be obtained from direct-to-consumer genetic testing, it may be best to send them to a dementia specialist. This is an ever-evolving field, and current testing for dementia is far from definitive. When a patient with known dementia presents with worsening functional decline, this could certainly be secondary to progression of the underlying brain disease, as we know is destined to happen with progressive dementias. However, if the decline is steeper than what may be expected for the general disease prognosis (a loss of 3 points on the MMSE within 6 months), it is aways important to evaluate the patient for other triggers for functional decline, including depression, delirium, and an adverse medication effect. Although depression and delirium, both common mimics of dementia, are ruled out when the diagnosis of dementia is made according to the DSM V criteria C and D (C. The cognitive deficits do not occur exclusively in the context of a delirium. D. The cognitive deficits are not better explained by another mental disorder [ex: major depressive disorder, schizophrenia].), they can both be processes that arise after dementia has begun. Re-assessing for these potentially superimposed processes can be more challenging in the patient with underlying dementia, but it is vitally important as treating a cause of delirium can be life-saving, and addressing depression can substantially improve quality of life. When it comes to the physical insults that can result in a delirium, consider a differential that includes particularly relevant insults in this population, such as medication effects, infection (commonly, pneumonia or UTI), metabolic disturbances, and trauma. *Legislation regarding physician reporting of drivers who are suspected of being unfit to drive varies between provinces. This article by the Canadian Medical Protective Association gives a good overview of the situation as it is currently. Instrumental Activities of Daily Living (iADLs) An individuals ability to manage their iADLs can be assessed by screening for their capacity to manage the following domains:
Basic Activities of Daily Living (bADLs) An individuals ability to manage their iADLs can be assessed by screening for their capacity to manage the following domains (the morbid acronym DEATH helps me remember these):
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By the end of postgraduate training, using a patient-centred approach and appropriate selectivity, a resident, considering the patient’s cultural and gender contexts, will be able to...
Dementia Key Feature 6: In patients with dementia, assess competency. (Do not judge clearly competent patients as incompetent and vice versa.) Skill: Clinical Reasoning Phase: Diagnosis Mental Competency Key Feature 1a: In a patient with subtle symptoms or signs of cognitive decline (ex: family concerns, medication errors, repetitive questions, decline in personal hygiene): Initiate assessment of mental competency, including use of a standardized tool. Skill: Clinical Reasoning, Communication Phase: History, Physical Key Feature 1b: In a patient with subtle symptoms or signs of cognitive decline (ex: family concerns, medication errors, repetitive questions, decline in personal hygiene): Refer for further assessment when necessary. Skill: Clinical Reasoning Phase: Referral Key Feature 2: In a patient with a diagnosis that may predict cognitive impairment, (ex: dementia, recent stroke, severe mental illness) identify those who require more careful assessment of decision-making capability. Skill: Clinical Reasoning, Selectivity Phase: Hypothesis generation, Diagnosis Key Feature 3: When a patient is making decisions (ex: surgery/no surgery, resuscitation status) think about the need to assess their mental competency. Skill: Clinical Reasoning, Professionalism Phase: Hypothesis generation Key Feature 4: In a patient with cognitive impairment, identify intact decision-making abilities, as many may be retained. Skill: Clinical Reasoning, Selectivity Phase: Hypothesis generation, Treatment {A bit of preamble context: Today was the first day of my one-month rotation at Three Bridges, a community health clinic with a mandate to serve patients who have been marginalised and underserved in traditional institutions of health care delivery. These may be patients with substance use disorders, without a fixed address, who are single teenage mothers, who are HIV+, who fall within the LGBTQ umbrella, etc.} Three patients I met in clinic today prompted me to consider my ability to assess competency and highlighted my lack of confidence in knowing whether or not I could make the call regarding their decision-making capacity if I was the most responsible physician overseeing their care. One of these patients was an elderly gentleman with moderately severe major neurocognitive disorder (aka dementia) and melancholic depression. His therapy was clearly not optimised, and he was coping rather poorly, but yet he did not want to consider a change in therapy as was being suggested during the visit. I wondered if he was competent to make this decision. The second patient was a 19 year old transgender female (birth-assigned male) who wanted to initiate an application for genital surgery and appeared quite competent to make this decision based on my clinical assessment. But I was unsure of how exactly I could confirm - for a decision with as permanent of consequences as the one being requested - that it was a fully informed one. The third patient was a middle-aged man with a history of query bipolar disorder and alcohol use disorder who appeared hypomanic on assessment and not on any mood stabilisers. He was precontemplative as far as his alcohol use was concerned, with unrelenting alcohol consumption despite liver failure and a recent discharge from hospital for complications of heavy alcohol use. I wondered if he had capacity to make many of the decisions he was making on a day-to-day basis that were causing himself harm. So like a good little resident, I left clinic feeling motivated by the dejection of not knowing another whole chunk of how to be a doctor. As I walked home, I considered what I felt I would need to know to feel confident deciding one way or another if patients have decision-making capacity. When I sat down at home and flipped open my laptop to get to my notes on Capacity & Consent, all I found was a bare and anonymous paragraph that was certainly not my own composition: "For a patient to provide consent they must have the mental capacity or competency (legal equivalent) to provide consent, consent must be given voluntarily, must be informed and must apply to a specific act or set of acts. The ultimate responsibility for ensuring informed choice, mental capacity of the patient to provide consent, and documenting a valid consent rests with the caregiver proposing and providing the intervention." -Anonymous How can I translate this into my day-to-day decision-making in the clinic when I need to know if the patient in front of me has the mental capacity to make a given decision, and how do I know what constitutes me giving enough information so that they can be sufficiently informed to provide informed consent? According to UpToDate (2017), "In the absence of a reason to question an individual’s decision making, adults are generally assumed to have adequate capacity." Fair enough. So what are the reasons that ought to prompt me to question decision-making capacity? I read over the rest of the article, Assessment of decision-making capacity in adults (2017), and came up with a mnemonic I am going to call the 6Ds.
Great! So now I know what patient factors ought to prompt me to think about assessing a patient's capacity when facing the need to make a decision that may impact their health. Now how do I go about assessing the patient's capacity? The UpToDate fairies have provided a succinct and superb table summarising the 4 domains that need to be assessed regarding any decision whenever there is any doubt about patient capacity, or even if there is no obvious reason to doubt patient capacity but the ramifications of the health decision are of increased significance (pay particular note to the instructions beneath the table).  What exactly are the "relevant facts" that must be disclosed to ensure consent is informed?
Per UpToDate (2017) paraphrasing, informed consent necessitates that:
Legally, there are 3 ways in which the courts may decide that a physician has followed through on their duty to inform when obtaining consent regarding a treatment or other medical decision. Considering all 3 of these standards can help provide clarity when considering, for a given medical decision, wether all of the reasonably relevant facts have indeed been disclosed for the decision at hand. Per Informed procedural consent (UpToDate, 2017):
Although I cannot now retroactively seek answers from the patients I encountered today to determine their decision-making capacity, I believe my new approach (see below) based on the above information can provide me with the guidance to determine future patients' decision-making capacity moving forward. I am certain I will have many opportunities to put this to the test. Madalena's (aka UpToDate's) Decision-making Capacity Framework
This all seems like a lot of work, but in practice I imagine it could be done rather efficiently with a bit of practice. And regardless, it is important to put in the work because this is just the ethical thing to do. As UpToDate (2017) summarises: "The benefits of truly informed consent include
In summary "For a patient to provide consent they must have the mental capacity or competency (legal equivalent*) to provide consent, consent must be given voluntarily, must be informed and must apply to a specific act or set of acts. The ultimate responsibility for ensuring informed choice, mental capacity of the patient to provide consent, and documenting a valid consent rests with the caregiver proposing and providing the intervention." -Anonymous *Legal competency decisions are set out by law, in such acts as the Mental Health Act and the Personal Directive Act and Trusteeship Act (actual name varies but with the same idea), which vary provincially in Canada. |
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