Decisions
One of the down sides of solo practice is not having anyone readily available to act as a sounding board for difficult decisions. On the other hand, one of the up sides of blogging is having the whole world available to help with that function. I have recently worked through a dilemma, and although I believe I am comfortable with my conclusions (as I have reason to believe the patient is, too) I still have this nagging voice in the back of my mind. Preceptors from long ago? Hypothetical partners in a non-existent group practice? Who knows? I'm far beyond actually caring what anyone thinks of me, so it's not pure ego; rather I want to feel more confident that my approach to this situation -- while perhaps different from many others' -- is rational. In fact, what I really feel is that my approach ought to be the norm and not the exception.
I have a lovely 87-year-old lady who has been -- for lack of a better word -- failing, for about ten months. Although she claims to eat well, she has been steadily losing weight. Her memory is slipping as well, qualifying at this point as mild dementia. She complains of an overwhelming fatigue; all she wants to do is sleep. She's always been very active, especially in her garden, so she finds this lassitude quite distressing.
I don't really know what's wrong with her. Chest x-ray and mammogram are negative. Routine blood work is within normal limits. Brain MRI shows chronic ischemic small vessel disease and age-appropriate cortical atrophy; nothing to explain her condition. Upper and lower GI endoscopy were both negative. She hasn't "lost her will to live," a phenomenon I've seen in the past. She doesn't want to die. She's just failing.
I was trying to decide what -- if anything -- to do next. I could send her for a CT of her chest, abdomen and pelvis, looking for an occult malignancy. I thought long and hard about what those scans might show, given that from a cancer standpoint I've already ruled out brain, lung, breast, stomach and colon. Just about any finding I could imagine would require another procedure to confirm a diagnosis (ie, to obtain tissue.) At that point, any diagnosis I could think of (widespread malignancy being the most likely) would either not be amenable to treatment, or would subject her to surgery with or without chemo and/or radiation. She wasn't crazy about any of those options.
Then I considered the risk of kidney shutdown from the IV contrast plus the discomfort of consuming a large volume of oral contrast just to have the scans. Given the truism about what a large percentage of medical expenditures occur at the end of life, would I not also be doing the right thing for society by not even giving her a chance to get stuck in the endless cycle of tests and specialists and more tests? The more I thought about it, the less I was able to justify sending her for a total body CT.
But I don't know what's wrong with her! Isn't it my job to figure that out? Am I being aggressively compassionate...or just lazy?
I know what you're all saying: What does the patient want?
I'll give you her exact words: "I'll do whatever you say."
News flash, all you patients and patient-advocate types: when push comes to shove, most people ask me to make these decisions. In a very real sense, "patient choice" comes down to finding a doctor whose recommendations you can live with. We're the ones with the training and experience, and by and large it is our opinions patients want and deserve. I happen to already have an Advance Directive for this patient in my chart (dated 1993; the standard DNR in case of vegetative state, or -- her words -- "ability to live normally") and in all our discussions during her decline, she's never indicated that she's changed her mind. She is willing to concede this decision to me at this time. Frankly, that means she'd have the scans even though she didn't really want to -- if I thought it was important.
She took a turn for the worse over the weekend. I went out to see her (yes, a house call; on a Saturday night) and after a very long discussion with her and her family, I referred her to hospice. As it happens, she perked up considerably over the next 48 hours. Still, I'm not going to scan her.
So what's the consensus? Am I being prudent and compassionate, or am I just a lazy clinician?
posted by #1 Dinosaur @ 8:30 AM
19 comments
19 Comments:
Prudent and compassionate, but maybe missing an opportunity at the same time, IM(not-even-remotely)Humble Opinion. Take this for what it is.
Failure to thrive in the elderly is a phenomenon I spend a lot of time around. . . all these people in my life that keep getting inexorably older are giving me grey hair and a furrow in my brow so deep I can hide a quarter in it. I see a lot of people who just "run out of steam" at some point.
Is it possible that her dementia is Lewy Body Dementia? One of the hallmarks of the disease is excessive sleepiness and apathy/reduced motivation. My father-in-law was finally diagnosed after he was spending 20 hours a day asleep, just a two years after he was golfing 18 holes at a time with no major "sentinel incidents".
Physicians in the community don't recognize it nearly as often as possible, yet it's astonishingly common (20% of dementia patients, perhaps, based on autopsy findings in retrospective studies). It doesn't produce cortical volume loss like AD or multi-infarct dementias - most people with DLB have age-appropriate or better brain MR. The cognitive deficits are different than those in AD, so while their dementia may qualify as "mild" in, say, a memory domain, it's more obvious in others, for example, executive function.
The beauty is that the condition is remarkably treatable, at least for some patients. The gold standard in diagnosis and treatment of DLB is embodied in a piece of CME written by Brad Boeve at the Mayo Clinic, and is found here.. In short, cholinesterase inhibitors +/- psychostimulants are considered optimal by some clinicians, and where N=1, we can swear they work dramatically. There's also evidence for Namenda, albeit largely anecdotal and small RCT, and researchers in areas where Provigil isn't commonly available have had good luck with dextroamphetamine and caffeine(!).
To me, part of good palliative care is supporting the quality of life in the patient, even if that may ultimately be less desirable in terms of total longevity. Given that th F-I-L has heart rhythm issues, stimulants don't seem life-prolonging, but they sure improved his quality so dramatically that we're willing to run the risks.
E
You are being very prudent, and very compassionate. It wouldn't be surprising that she goes to hospice, then gets revitalized.
Sounds just like my mother. Failure to thrive, weight loss, fatigue. I was frantic trying to figure out what is was (she never did like consulting her 'real doctor,' so it was up to me). I was convinced it was cancer until the day she left a message on my cell phone, "It's Mom, I can't remember anything, call me as soon as possible."
It was little strokes--an MRI years earlier had shown white matter hyperintensities, and I'm sure one now would be lit up with them like a Christmas tree. I called Hospice that day, and they were out in 3 hours to admit her. We waited the whole summer of 2007 for her to die with 'the big one' which never came, so I had to put her in a nursing home as there were days she could not support her own weight and needed two attendants.
Now, near spring '08 and she varies between transient global amnesia, expressive aphasia, and days so good she invites the staff in to tell her their troubles (she is a psychologist). Now I feel guilty that I never put her on Plavix nor kept her on the Ritalin which worked well for awhile. Not dying, not living much, a Dr. Daughter's guilty dilemma.
Waiting with baited breath for the answer to this one....
Part of me feels we should not write off the old, part of me feels we cannot stave off the inevitable. Just hate to think that there could be anything treatable...
Dr - please also consider nutritional issues. My 95 yo grandma was showing similar signs. Turns out, elderly women need increased protein, less vit A, etc. A little research on nutritional needs of elderly folks could help. (See Google Scholar) Please try! Grandma is showing improvement after we analysed her nutritional needs vs. what she's been getting. I love my grandma - and I know I am blessed to have her with me at 95 yo. so I am thrilled that she has responded so well to the nutritional 'intervention'. Good luck!
Deciding not to do the scan is not lazy. Lazy would be concluding (without good reason) that the problem is definitely something that would be shown by the scan and therefore you can stop thinking about what it might be once you decide not to do the scan.
Dealing with the uncertainty is one of the hardest things about NOT getting a test. And formulating a plan of action without being able to solve for all the variables in the equation--I feel for you.
I had an (elderly) patient with maroon blood in stools once, who definitely did not want a colonoscopy, EGD, upper GI, or CT scan. I sat down with patient and daughter, carefully went over main differential and general prognosis and diagnosis and treatment for each. Eventual decision: stopped aspirin, started Prilosec, and saw patient monthly (at first) to see if they got sicker or changed their mind. Much more work and stress than getting a GI consult. Several years later, patient alive and feeling fine--cured, or maybe not.
Interesting comments above - the multi-infarct dementia and Lewy Body dementia theories are certainly plausible. It's also possible that she is not eating enough (tea and toast) and this is tiring her out - and that improving her nutritional status could perk her up quite a bit. Why isn't she eating? Could be due to slow progression of dementia, could be depression (she has sleep and eating disturbances, though I know she denies wanting to give up on life... keep probing there if you haven't already). Does she have any family members that know her habits well? They could provide some diagnostic clues... Has she lost her appetite? Maybe there's a cardiac cause - folks with heart failure can sometimes feel nauseated or lose their appetite. I don't think you need to do a CT of her abdomen without any symptoms. You've ruled out as many malignancies as is reasonable at this stage IMO. And no you're not lazy - otherwise you wouldn't be posting about her to this blog!
What are you likely to find on that CT that you can treat effectively in this patient (particularly without giving her poison and making her worse to do it)?
I had a similar patient come in. Had to admit her to hydrate her enough to get the CT because she was so sick--pancreatic cancer. She went on hospice and died peacefully. I knew that was coming before the CT. I think for her and her family, knowing was the only benefit of the CT.
What about depression?
What about her heart?
Only a couple thoughts.
drh
Is she on any medications that can cause anorexia? My MIL was put on an antidepressant and it killed her appetite. She lost a lot of weight and though she would claim she was eating, she truly was not. She had zero energy as she lost this needed weight. I don't know if there are any non-medication causes of anorexia, but it seems like once "not eating" gets started, it can be hard to turn around.
I would also wonder about a nutritional imbalance because another older friend of mine recently found out she does not take up B vitamins from food anymore and now gets them injected. She was in a fog and had unsteady walking, and it was causing her not to do normal activities any more. Just a thought. The only other fatiguing thing my family elders have dealt with is anemia, but I'm guessing you already looked at that.
It's been very educational having longevity in my family circle. ;o)
Lot of good suggestions in here by people who know a lot more about things than me. But I'll just second the response that you aren't being lazy.
I'll go along with prudent and compassionate, and add to the discussion regarding dementia and weight loss. There's a host of recently published information regarding weight loss as a predictor of more severe dementia; you've already noted that she's got some cognitive decline. She may not have been eating regularly and is perking up with the attention (and regular meals) from daily caregivers, or you may never find the specific reason for the weight loss. I think that watching and waiting is reasonable at this point.
AND: Happy almost birthday!
A
I assume you did a B12 level.
At a conference I went to last year, the Endocrinologist suggested that B12 below 300 is a deficiency, even though the listed levels at various labs may cut off at 220 or 250.
A confirmatory test to detect early B12 deficiency is an elevated methylmalonic acid level. I have caught 2-3 patients this way over my 20 years in practice.
Otherwise, you are doing what I do in such a case.
Would the intervention produce a result for which the patient likely would decline treatment? If so, which I think she would, then why do the test in the first place?
We do way too much at the end of life--and I am very guilty of this. In many cases it is only to alleviate the guilt of the family which is NOT a reason to do a test. If I am reasonably certain the patient would want the test performed, then I would order the test.
This is where a long-term relationship with a patient pays off. You have had time to understand the patient's real wishes in such matters such as end of life care.
Off the top of my head, I thought medications and hypothyroidism (although she shouldn't be losing weight) while reading through this. Also considered normal pressure hydrocephalus - "wacky, wet, and wobbly." Sometimes ventricular enlargement on imaging studies is an early finding. Have seen this in several elderly patients including a close family friend who went from being whacked out one day to playing golf two days later. EBV? Adrenals?
You should be commended for not doing the shotgun testing. Don't second guess yourself.
Please post an update. I love these kind of puzzling cases.
Hey, Dino, how 'bout giving her a Reiki treatment? Ducking, ducking...
? What will I do/recommend if the test shows "pain and misery" ahead, with little chance of a cure? What a concept!! Don't beat yourself up-I believe many patients in this age group are used to being passive in their treatment-"I'll do what you want". You job is to explain the options and the implications/risks/benefits with each option. I like the ideas on nutrutional assessment, but would avoid channeling, chealation, reiki and colonic flushes!!
tom
I might treat presumptively on the assumption of depression and dementia, with the two of them she might not really remember she's not eating.
All patients should have doctors as diligent and compassionate as you.
You've handled the situation well.
The only prudent and compassionate action you've taken is to make the house call (and yes, full marks and lots of cheers that above and beyond). But from the rest of your post is sounds like you've given up very early for no particularly good reason. I don't think this makes you lazy or uncaring, but being 87 doesn't mean that her life is not important. You say she's getting worse, you don't know why and you're not going to find out so your condemning her.
Don't scan her if it's likely low yield, but there is still plenty of other things to do - is her exam completely normal, what about bloods/urine?
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