A perfect example of why I quit Metafilter. This comment recently received 270 favourites. An excerpt:
I work in healthcare. I belong to the Church of You Don’t Deserve This. I take care of alot of patients who, IMO, don’t deserve the medical care that I dispense. I know this is going to make me sound like a total and complete ass, but let me elaborate.
I take care of patients with kidney disease. Some patients got kidney disease through shitty genetics. Others through odd accidents or bizzare infections. Others through cancer. Alot of our patients (like my own father) got kidney disease from letting their diabetes go untreated for 20, 30 years. Regardless of how they got it, the vast majority of my patients refuse to take steps to prolong their life and improve their quality of life.
Dialysis patients, as a whole, are notoriously noncompliant. This is usually because they have a history of non-compliance which usually got them into their situation in the first place.
For example, dialysis patients shouldn’t really drink more than a liter of water per day. Yet we have patients who, as soon as they leave our hospital dialysis unit, go home and start chugging gallons of milk or juice. (And are consequently back in the hospital within a few days). We have patients who have two homes: their regular residence and the hospital. They treat themselves badly and then spend 1/3 of an average month in the hospital, racking up hundreds of thousands of dollars in Medicare bills over the course of a year.
You know what I think about these people? I think they don’t deserve my services. (yes this includes my dad). I think that my services are wasted on people who refuse take even basic steps to help themselves stay well. I think I’d rather focus my energies on the patients who recognize the seriousness of their condition and take an active role in their self-care.
If I were king of the world, I would tell these people, “Look, we’re giving you three months to turn your life around. Start taking better care of yourself, stop drinking yourself to death and take your medications as prescribed or else we’re going to withhold treatment until you do. There are alot of people with kidney failure who want to live and we aren’t going to divert scarce resources to people who don’t care one way or the other if they die or not.”
Thats what I would say, if I ran the world. The Church of You Don’t Deserve This.
That’s not what I say, however.
My profession demands that I dispense medical care to all who need it, regardless of my own personal judgments. My profession demands that I provide care to someone who treats their own body so badly that they have their own PO Box at the local hospital. My profession demands that I care for the unruly, the mean, the stupid and the non-compliant. My profession demands that I provide care for brain-dead patients who are just being kept alive by their families for the monthly social security cheque. My profession demands that I care for everyone who darkens the door at my clinic, regardless of whether or not they are saints or Dick Cheney. My profession demands that I do things, which, in a perfect world, I would be able to not do.
And yet I do them anyway, because it’s in the job description.
What a hero.
I apologize for my lack of analysis right now, and for my lack of recent posts, but I’m adjusting to new medication and basically have been sleeping my face off. In a few days, I should be back to my old self.
Allow me a moment of unmitigated cheesiness and affection, however, to say this: I love my commenters. You are all making this new website adventure a lot more fun than I thought it would be. I love what’s happening here, and I want it to keep happening.
So, yeah. I guess I kinda like you. That’s all. Don’t go spreading it around or anything.
Comments
62 responses to “Empathy: not your strong suit.”
So what does he want? For people to be forced to do exactly what their doctors tell them to do, and no backtalk? Does he really want to go there?
No, I suspect that what he wants is for all those useless old people to just die already.
Either way, what goes around comes around. Eventually.
Oh sweet Jesus fucking Christ, talk about a god complex.
Was this person serious? I hope s/he was being at least a little bit hyperbolic. Sigh.
What a major jerkface. S/he wants to run the world? Her only qualification would be standing in judgment who s/he believes is less worthy of healthcare. I thought the “Church of You Don’t Deserve It” would mean that no one deserves disease or quality health care. Instead it is basically blame and hate the patient. I also suspect a lot of confirmation bias in her/his interaction with patients.
Kidney patients drink too much water? Did she every think they may be thirsty?
This miserable person ought to look for another profession. Go to law school and become a judge if you feel that strongly. I am sure this person would get much career satisfaction by working for an insurance company and denying claims.
correction
I thought the “Church of You Don’t Deserve It” would mean that no one deserves disease or (insert the words lack of) quality health care.
While I understand the comment in context to the larger issue of whether it is a violation of the rights of a pharmacist to have to dispense birth control or Plan B, I think this commenter attitude is indicative of what many of us face on a daily basis. I am trying to be polite, but my gut reaction to this is one of anger and sadness. Where is this persons compassion and what the hell are they doing in the medical field in the first place? If you feel that only some people “deserve” your respect or service then obviously this is not the right job for you.
Also, what a perfect illustration of the attitude that health is a moral issue. And what better way to demonstrate that then referring to it as the “Church of you don’t deserve it”. I mean that is almost too perfect for words. The assumption that I am OBVIOUSLY abusing the crap out of my body because I am fat, so naturally I don’t deserve jack shit in the way of medical care right? Wouldn’t have anything to do with this pesky thyroid, PCOS, gluten intolerance or endometriosis right? Oh heck no, obviously I am guzzling deep fried Twinkies and I deserve to just bugger off and die so I don’t inconvenience anyone. What does this person expect? Only the virtuous, healthy people will be requiring medical services? Right, doctors only exist to treat the healthy – the rest of us are just brain dead jerks who screw up our internal organs for peas and giggles.
Ugh. Being polite is hard – when honestly what I feel the need to do is respond with a truck ton of swearing and perhaps some vehement gestures.
@ Michelle – I hope you adjust easily to the new meds – and it gave me a giggle to think of someone “sleeping their face off”. Love the sappyness and just wanted to say that I appreciate this blog and it has had a big impact on my daily life already. So cheers to more!!
I understand the frustration of being an outsider, seeing a problem and a (supposed) solution, and being unable convince someone to take the steps necessary. However, all people deserve the services of a competent doctor because they are human beings. This commenter doesn’t know the individual or their reasoning – perhaps drinking water/milk/juice gives them pleasure. Doesn’t that improve quality of life, even if it doesn’t improve their health?
And I would like to tell himself to go f@&* himself for the comment about dialysis patients. My grandmother essentially committed suicide by refusing dialysis. She’d had a heart attack, and in three months of hospitalization, was just not healing. As soon as the doctors fixed one problem, another arose and she was just done with it. But they wouldn’t stop, no matter what she said. So she started refusing dialysis. With type 2 diabetes, she shouldn’t have lasted 3 days. It took a week.
A few years ago my initial reaction to this would have been complete horror – I applied to medical school largely because as a fresh faced and rather naive teenager I wanted nothing more than to help and heal with compassion and care. That’s still my aim, but I suppose I have a little bit more sympathy for this now because after 10 years of training and working, I can empathise with the sheer utter frustration that medical professionals face.
I would never deny my care to anyone – being from the UK, one of the things I am most proud of is having the NHS free at the point of serivce to all who need it. On the other hand, watching the amount of publicly funded resources and staff hours that go on non-compliant patients, who refuse to make the changes that they themselves will concede are necessary for their health is very difficult when it is plain that that funding is desperately needed in other places – lung cancer patients who won’t even attempt to stop smoking, diabetics who make no attempt to regulate their blood sugar levels, patients who do not finish prescriptions despite specific instructions, I could continue on indefinitely.
I’m well aware that this sounds very paternalistic and judgemental, and I’m very wary of condoning it – people’s bodies are their own to control and it must be freely their own choice to follow or ignore medical advice. The crucial element of healthcare is that it is a right and not a priveledge for those of us who have obeyed a set of specific criteria. That is truly truly what I believe, and I am proud to work in an organisation that attempts to facilitate this, but I think what I’m attempting (badly) to say is that this person does not necessarily have a “god complex” and that they’re not necessarily a bad person – just someone capable of seeing and being frustraded by the huge expenditure that could so easily be unnecessary, has the potential to do so much good in other places and in fact results in a lack of provision and a detriment to patients suffering in these areas. Its difficult for me to say that the money spent on conditions exacebated by poor patient management wouldn’t be better spent in mental health/pyschiatric or surgical provision, both fields struck by chronic underfunding that hurts the healthcare of other patients who may have made more effort to safeguard their health.
In an ideal world, everyone would have access to an infinite amount of our resources, but with a finite budget this is just not possible. I struggle to say that someone who has ignored medical advice and worsened their condition does equally warrant additional spending as someone who is worsening despite their best efforts.
I’m not saying this viewpoint of healthcare being something earnt is right, just that as a practitioner who regularly deals with limited funding to be allocated, I dont think this issue is as clear cut as other commenters are claiming, even if the tone of the argument was patronising.
Chloe — I appreciate your response and your perspective. I think you’re right to muddy the waters and complicate the issue. Reality is never as simple as our opinions would like it to be.
I guess I just find this attitude frustrating, overall, because most people who appear “non-compliant” are, in many cases, dealing with roadblocks or challenges that haven’t been appropriately addressed. And, to me, this comes down to one’s fundamental assumptions about human nature: are humans willfully disobedient, ignorant, stupid creatures who purposely create obstacles to their own well-being, and to frustrate those who try to help them?
I suppose I just don’t prefer to make that assumption. And the term “non-compliant” has always given me the willies.
In my mind, the onus is on US (as healthcare practitioners) to offer good treatments. If a patient is incapable of complying with that treatment, then, in my opinion, the problem more often lies with the treatment than with the person. (And, oftentimes, the appearance of simply being “unwilling” to comply with treatment actually masks a real reason for being incapable of complying with it.) Because, apart from the frankly suicidal, most people *do* want to live, and *do* care about their own well-being. But other forces, beliefs, conditions and obstacles cause them to do things that are self-destructive. It’s those obstacles that are the problem — not the person.
Maybe I will feel differently about this in a few years. But right now, I have a hard time subscribing to a view of human nature that paints people as ignoramuses that not only cut off their noses to spite their face, but use up valuable resources (not least of which is Important Doctor Time) along the way.
“I guess I just find this attitude frustrating, overall, because most people who appear “non-compliant” are, in many cases, dealing with roadblocks or challenges that haven’t been appropriately addressed. And, to me, this comes down to one’s fundamental assumptions about human nature: are humans willfully disobedient, ignorant, stupid creatures who purposely create obstacles to their own well-being, and to frustrate those who try to help them?”
I really like this paragraph. I think it’s an insight that is naturally tied in with the size acceptance idea – that is,if we stop seeing our bodies as disobedient, disordered, “sinful” things to be kept under control and start actually listening to what they tell us, beginning with the assumption that it *is* valid, it becomes apparent how often people treat other people like disobedient, disordered things to be shut up and controlled, too. If size acceptance spins off into a greater openness to the point of view of people who seem “out of control”, it would be one of the best things that could happen, IMO.
I thought drinking water was good for you, and when my kitty had kidney failure the treatment was to give her a hundred millilitres of saline under her skin. Perked her up a lot. And even if you do have to do dialysis more often, maybe the patient feels better with more dialysis and more liquid than restricting fluid and only getting dialysis once a week.
Gah.
Anyone else having trouble believing that this person acts as professionally as they think? I cannot believe that this entitled attitude doesn’t bleed through; enough that if someone videoed their day and showed it to them I bet they’d see it themselves.
If patients as a group are non-compliant, then either what they are being asked to do is undoable for most, or even if they do comply, they don’t get the expected results, so non-compliance is assumed. Reminds me of diets and fat, how so many people are assumed to be lying about how much they do or do not eat. Screams more research needed to me.
Well, unfortunately, in the case of kidney disease, it’s true that the fluid restrictions are there for a reason. And not just to reduce the frequency of dialysis needed, but to help ensure proper electrolyte balance, as well, I believe. The latter consideration can be fatal if not heeded.
But, yes, what really concerned me about this comment was, even if this person does fully abide by the all of the requirements of his/her profession, I can’t help but think that this sort of attitude and bias creeps into practice in some way, having a negative effect on patients.
I haven’t done healthcare, and maybe I’m just a cynic, but heck, I don’t believe most people deserve anything. This really sounds like me after a few bad classes of teaching. though, in private not public. which is not to say you aren’t expected to do your job, but I really can’t understand how people can be in a j0b that involves lots of public interaction and not think that 50% of the population at least needs to be smacked fairly regularly. I do education, and I see it(students and parents). and yes, you can keep from telling people that. Though I do admit, you can’t tell by looking who’s going to be in the deserves a smack category. Ever. and I hear a lot of similar stuff from my boyfriend who is in healthcare, but actively does work to get everyone equal treatment-they don’ t all deserve it, but nobody deserves less than the others who don’t deserve it, if that makes sense?
I’ve been working as an RN for over 25 years, and sadly, I’ve met quite a few docs/nurses/therapists like the one who wrote this disgusting little screed. What I find most puzzling is that I don’t really recognize these patients he’s talking about. Sure, every health care provider will run into someone who says, “Screw it. I’m not changing anything I do, and when I get sicker, I’ll blame everyone else and expect miracles!” But those people are really pretty rare. I haven’t been working with especially privileged patient populations either: my first eight years of nursing were spent in an inner city Detroit hospital cancer unit; the next 17 years were spent as a visiting nurse, mostly in the rural south, though now I’m back in the rural midwest.
My experience with patients is that most of them want to do what they can to both improve their conditions and to feel better. The key phrase there is “do what they can.” Not everyone is able to make dramatic changes in lifestyle, for a variety of reasons. Too many times, the changes they’re being asked to make are complicated by economics; inadequate support from family/friends; poor education; stressful home lives; no available transportation; unsafe home environments; mental illness, etc. Sometimes the changes/treatments don’t make them feel better: they often cause pain/nausea/etc. Conversely, sometimes the patient does do everything he/she’s being asked to do, and it doesn’t make a damn bit of difference in their progress or symptoms. They then ask themselves why they should continue doing something that’s apparently ineffective, and that’s when they say “screw it.”
I have never met a patient who considered the hospital his/her second home. Never.
What kills me is this doc’s attitude that if a patient doesn’t do everything that he’s prescribed that it’s automatically a failure on the part of the patient. By blaming the patient, the doctor removes any blame that may rightly lie with the doctor and the therapy itself.
@Carolyn–you brought up the “health as a moral issue” idea. I find it so interesting that many in the health care professions have bought into this meme, when historically, what was considered the primary moral issue emphasized in our education and practice was not the state of patients being healthy and doing “healthy” things (where the moral agent is the patient) , but instead was the compassionate provision of care (where the moral agent is the health care provider.) That’s a big difference in emphasis, with major consequences in care and attitude.
Thank you, MamaD. That’s really been my experience, too, for the most part.
People WANT to get better. When something is stopping them from doing so, the least likely thing is that it’s simply their “attitude” or their “noncompliance.” Most likely, it’s one of about a million things, as you mentioned — money, social support, education, stress, transportation, undiagnosed mental illness, etc. etc. etc.
In my opinion, blaming stuff on the patient is basically a last resort, explanation-wise. And jumping to that conclusion early on might be a sign of impending burn-out. Or even of a personality not well-suited to be in a caring profession.
But I have to admit, I am a shiny-happy idealist, at least when it comes to this.
I wanted to add (as though I hadn’t written enough already! :) ) that my attitudes about this changed dramatically when I began working as a home care nurse. I know I was never like this doc, but I really didn’t have 1/10th the understanding I gained about the obstacles some patients face until I gained entry into their homes, and saw how they lived their lives. Even if they face NO economic hardships, it is terribly difficult to be “compliant” (God I hate that word!) when you cannot drive, your spouse won’t take you to your appointments, and the bus you’ve scheduled to take you doesn’t show up. It’s kind of hard to take your medicines when the mail-order pharmacy screws up your order and it arrives two weeks late. It’s not so easy to take that full diuretic dose, when you only have a caregiver available one time a day, and if you sit in a wet diaper too long, your skin will probably break down. Maybe it’s not such a no-brainer to make dietary changes when you are unable to cook, and your family member won’t make the suggested alterations.
I spend at least half of my time attempting to remove a patient’s obstacles to care.
But hey, it’s easier to blame the patient and call him/her “non-compliant.”
What a fantastic experience — I wish that was a requirement for all med school students! Do a rotation in home care. Seriously!
I wish that was a requirement for all med school students! Do a rotation in home care. Excellent idea! They can drive with me!!
At my medical school we accompanied allied health providers on home visits as part of our community health course. It was a very good experience.
MamaD, I think I love you. You’ve said everything I was thinking, but from the position of someone who has lived in the professional trenches.
Mr. Twistie has a variety of health issues which his doctors frequently fail to adequately address. He’s had drug side effects that his doctors refuse to believe have happened to him, and every time he comes to them with a new issue, he’s given another prescription (often for a drug that doubles what another drug he’s on is supposed to be doing), admonished to quit smoking (he’s taken at long last to offering a thousand dollars to any doctor or nurse who can find ANY indication ANYWHERE in his patient files that he has EVER smoked at all…which he will never have to pay out since he’s never smoked), and then blithely ignored about his latest problems.
If he could get private health insurance (with a triple bypass in his background and Type II diabetes in his present, he can’t), he would probably ditch the joke of a plan his work offers.
The latest trick they pulled was when he called one afternoon to discuss a problem he’s had intermittently that they have entirely failed to discuss with him in his last FOUR appointments. Mr. Twistie was told he needed to go to the ER at once, if not sooner, if he was having these symptoms. He informed them that he wasn’t having them at the moment, but has been trying to talk to them about these intermittent symptoms for nearly six months and would like them to pay some attention to what he’s dealing with. They informed him that if he didn’t head to the ER right that instant to deal with symptoms he wasn’t having right then, they would label him ‘noncompliant’ in their records.
Yes, that’s right. He’s been trying to get their attention about symptoms that include shortness of breath (in a man with a history of heart trouble, no less!) for SIX MONTHS, and they label him as noncompliant because he keeps asking for medical care from his doctors.
I have a horrible feeling that the person who wrote that screed is just such a health care professional.
I guess I just find this attitude frustrating, overall, because most people who appear “non-compliant” are, in many cases, dealing with roadblocks or challenges that haven’t been appropriately addressed.
And this applies to so many other things than just healthcare, too. I wasted my entire teenage years trying to convince people that no, I was not skipping school, I was sick. No, I was not depressed, I was frustrated because nobody could figure out what was wrong with me. No, I didn’t “forget” to do my homework so often because I was lazy and disorganised, I just couldn’t concentrate and my mother didn’t have the time to help me. Besides, she never believed me either.
Now, after all of this effectively kept me from finishing school or getting a job and probably worsened my health problems, I have to deal with statements such as, “Most people are poor because they made bad choices somewhere along the way.” I can’t help but think that 90% of those “bad choices” were most likely not choices at all, and the other 10% were made because the person was either too young or simply not intelligent enough to realise the danger. I won’t blame anyone for that.
Okay, that was a bit off topic, but it’s essentially the same problem. People assume that you aren’t even making an effort when in reality you’re doing all that you can.
Not off topic at all, Tiana. I think what you’re talking about is clearly connected — I had some similar experiences as a kid, since I do have (chronic, longstanding) depression. It took them a while to figure out what was going on with me, and to confirm that I wasn’t just an evil brat throwing a fit to get out of going to school (which was weird, because I’d always loved school.)
Not to sound like a broken record, but to me, this all comes down to those assumptions about human nature. Is a person just being willfully disobedient because they’re essentially bad? Or because there is something else going on that you can’t see?
I have worked on a large scale qualitative research project for the last 7 years that has followed the health-care experiences of 30 families with a child with special needs. These families come from a variety of socio-economic status levels and the children have a wide level of special needs from minor to major. We have interviewed them and their health-care professionals, spent time with them in their day-to-day lives and video-taped many of their health-care encounters. Over and over again we have found real, significant reasons behind “non-compliance” that health-care professionals were not able to see because they did not have the time to view these people’s lives in the depth it took to understand what caused the non-compliance. Often the reasons are multi-factorial and even the patients can’t explain them quickly–when they try they are often cut-off or simply not heard by the professionals they tell. They sometimes tell the wrong people (receptionists or nurses who don’t have the power/time to tell those who could help) or the issue is just too complex to explain. These families find themselves in situations where they literally have to choose between two bad outcomes–where there is no good choice, where choosing to spend the time/energy/money on compliance leaves them in a hole in some other area of their lives. They make complicated decisions about what risks to take with very little support. It’s been an incredibly eye opening experience for me as I am also a practicing clinician. These findings will be published soon and I hope they can help some health-care professionals understand that non-compliance is a hugely complicated issue.
Michelle, I want to return the thanks to you for starting this blog. You’re creating a really amazing space.
This is totally fascinating. I would love to read this study!
If anyone is interested in why home care is important, you should check out the work of Dr. Mark Nowaczynski, he began photographing his home care patients as a form of advocacy for better care at home for seniors, instead of them being forced into long term care or hospital. There’s a documentary about him produced by the National Film Board of Canada called “House Calls”.
In terms of being able to find the supports you need, it’s a mess! There’s both private and not-for-profit agencies to help support people in their medical care, but it is difficult to know who to call, and what to say to be able to qualify for services. And it’s frustrating for the client to have to tell their story multiple times, to only be told to call somewhere else.
Thank you, Jessica. I am a total health care geek, and I love this kind of stuff. Definitely going to check it out.
I am also a doctor in the UK, and I recognise that my job is to help people live a life they value, not their job to to make mine easy! Health is just one dimension of a person’s life. Poor health can make the other dimensions that much harder, but it is always down to the individual to decide how much priority they are going to give to the strictures and requirements of their medical advisors. Come the day when I need complicated medical care I would rather have a physician who sees the situation as a partnership between us, not just me doing as I am told or getting the **** out of the hospital! I can do without abusive relationships, thanks.
Since so many smart things have already been said, I’ll only add that I love it when people start off with, “I know this will make me sound like an asshole, so I’LL JUST GO AHEAD AND KEEP TALKING NOW.”
I thought it was funny that he was like, “But let me elaborate…” where the elaboration only compounded the assholery of his original assertion. I thought it was supposed to mitigate that? Not add to it? Or something? Gah.
slightly ot —
i am a “non-compliant” patient. i had a breast reduction four weeks ago today. at one follow up appointment my surgeon told me to stop using polysporin on my incision sites. i did that once, ONCE, and came down with what turned out to be a staph infection on my left breast. last week my husband and i went to do a bandage change and, well, i won’t go into the gory details. i called my surgeon’s office who called her at home and she called me. i explained, in full gory detail, the problem.
she advised me to hit it with some hydrogen peroxide, bandage it up, and see her in the morning.
if i’d done that, the infection would probably have gotten into my blood. luckily, i pay attention to my body and know when something is Very Wrong, and i went to the emergency room. when i finally was seen by a doctor, he was shocked at the advice i’d been given.
so, yeah, sometimes there are damn good reasons patients are “non-compliant.”
Maggie — that…just sucks. Seriously. I’m glad you eventually got the care you needed, even if you did have to be “noncompliant” to get it.
what’s better is what she said at my appointment yesterday (one week post-er): stop using the polysporin again. i said, “not for nothing, i’m fighting a staph infection. i’m going to keep on with the polysporin EVERYWHERE until i’m fully healed.” she reluctantly agreed that it was a good idea. sigh.
you’d better believe i’m sending a strongly-worded letter to my insurance company about her when all is said and done.
Unfortunately, this doesn’t seem to be an uncommon attitude within the realms of healthcare. I understand the dangers of burn-out and how pervasive it is in the high pressure, high stress, endurance style atmosphere of care giving. If your not 100% Go for 80% of your 10 – 12 hour shift (ie; Emergency Svcs) then you, at least, have to be 100% On Point 100% of the time. Burn-out is almost inevitable. The fact that Burn-out might be a problem is, only now being seriously considered. Still, this is not an excuse.
Caregivers must have a responsibility to recognize when colleagues AND they, themselves, are starting to fray at the seams and get help, take time away, or even get out altogether if necessary. Peoples lives are at stake and, unless money was your motivation, that is why most of them went into this field in the first place.
These people need to start recognizing when they have become part of the problem rather than part of the solution and do something about it. Else wise you get stories like the ones you might find at First, Do No Harm (And you wonder why some people are noncompliant) or, worse, patients start dying in the waiting rooms.
Good point. I guess not only are the patients’ experiences and, well, humanity being glossed over, but the health care providers’ too – but for the above sentiments to be seen as signs of burn-out and something needing to be addressed, they need to lose every shred of legitimacy in people’s eyes. From the number of people who liked it, it seems we’re far from that.
Thanks MamaD and others for your insight into “compliance.” I feel much better, blaming the victim signals a sort of hopelessness to me.
I’ll kind of play devil’s advocate in this case; I’ll make some assumptions about what it would be like if I were in the original commenter’s shoes and see if I can articulate what would make me say the things the commenter said.
I can somewhat understand the commenter’s frustration overall; I’m not in the medical field but in the field I’m in there are many days where you’re overloaded with your schedule and you are in a field where you came in for one reason…for the commenter I’ll assume it was to help people and focus on their health and well being…and then get slammed with the reality that other people don’t really care about your priorities or why you understand something that gave you a passion to enter a particular field in the first place. You lose (or never had) perspective on why they see their own lives the way they do.
Non-compliant people just don’t see a compelling reason to adopt the lifestyle you want them to have. They take comfort in their lifestyle. They perhaps don’t see the benefits outweighing the negatives in doing what you want them to do, or they don’t really want to live longer, or maybe they view healthcare as being a magic band-aid for whatever issues they’ll run into down the road still. Or they psychiatric reasons for doing what they’re doing to themselves.
Meanwhile as the person giving the care you have information that you really believe would put these people on a track to better health and see many of them squandering thousands of dollars or more on resources that could be better allocated to people who DO work to be compliant and improve their condition; these people have to compete for resources (money, time, care) with the people coming in who are willfully ignoring your advice in the first place, so the noncompliant people are shoving those who are utilizing health services “properly” aside in line, so to speak.
I think that would be very frustrating. Not to mention that if you see the non-compliants day in and day out you begin to question why you bother with your job, something you may have started out with a great passion for, only to see how so many other people treat your advice as if it’s worthless. It’s sad.
Some people have questioned the wisdom of being non-compliant (such as the breast reduction infection comment). Health care workers are human and as such they make mistakes. I’ve encountered plenty of doctors who seem to suffer a god complex, yes, but at some level (usually after a mistake is made) they (sometimes flippantly) acknowledge their humanity as well. Perhaps part of this is groomed into them as they are going through training and have to navigate the waters we patients don’t normally see…the need to bolster their confidence and stamina in order to not only wade through the long hours, neverending lines of compliant and noncompliant patients (how many smoking cancer patients can you see each day before questioning why you continue to see so many cancer patients still smoking and begin to lose faith in humanity?), the insurance requirements you have to pay out in order to cover the litigious patients and the bureaucracy that keeps you chained to a desk for paperwork to companies and administrators instead of doing what you went to school for in the first place…dispensing healthcare?
As I said, mistakes do happen, and good doctors and healthcare workers do their best to minimize them. We simply become more outraged at them when it does happen because when these people screw up the consequences are more personal and potentially horrific; as non-healthcare workers we have the benefit of most of our screwups having relatively minor consequences that probably usually won’t result in someone losing a limb or dying. For that our god-complex friends deserve some empathy for taking that risk of entering such a field and still trying to help others despite what can end up coming back on them as backlash, no?
Thanks for your comment, Barry. I’ll apologize in advance if it seems I sort of led you into shark-infested waters here, since I originally commented on your blog! But I’m always up for a good round of devil’s advocate.
Anyway, the part that I have trouble with, specifically, is stuff like this:
I think everyone, basically, takes comfort in their lifestyle to some degree, insomuch as it’s at least familiar. The devil you know, right? The thing is, a lot of us are never in a situation, healthwise, where we have to question that lifestyle at all. In that sense, we’re pretty privileged. And I’m going to guess that every single person who’s ever had a health problem that necessitated some change in lifestyle (and I’m not just talking eating and exercising here, I mean comprehensive lifestyle stuff, like mobility issues, or having to use a CPAP machine, or not being able to sleep in your usual bed anymore, or having to deal with medication side effects) had some difficulty with that, and probably would have preferred, at first blush, not to change.
In a sense, it is the physician’s role to make those changes seem compelling. And if, despite their best efforts, and despite relying on other members of the healthcare team to provide other options and remove barriers (like getting a social worker to assess the family situation), if the patient simply cannot or will not make those changes, then that’s where all the pressure needs to end. Until the patient is ready.
But to be honest with you? I don’t think physicians often exhaust all avenues of inquiry before simply giving up and deciding a patient is noncompliant. I’ve just recently had emails from readers who provide perfect examples of this — physicians telling patients to make major dietary changes without referring them to a dietitian, for example. A doctor who writes off a patient as “noncompliant” with their diet, despite never referring them to actual dietary support, is negligent at best.
I do understand the pressures of limited resources, and maybe that influences practitioners to simply “give up” easier. But, in the end, what is more wasteful of resources — doing the revolving door act with a “noncompliant” patient out of legal necessity to provide care, or ACTUALLY EXPLORING the underlying issues, addressing whatever barriers are there, and then getting them the appropriate treatment?
Bottom line, to me: when people truly don’t care about their health and well-being, and truly don’t care whether they live or die — those people commit suicide. Seriously. I’m not being flippant. And even THOSE people are considered to have a mental health issue, not simply to be lazy giver-uppers who don’t deserve medical care.
The rest of people, if they are alive despite having the means to off themselves, obviously have at least a spark of caring about their well-being. Even if that spark only manifests itself as a fear of death. And if they are doing something (or not doing something) that, on the face of it, seems to put their health in jeopardy, well, then, the only logical conclusion is that there is SOMETHING ELSE going on there. Something that deserves investigation and addressing.
The logical conclusion is NOT that they just totally suck. And deserve to die.
Lack of compassion aside, that is not only not a LOGICAL conclusion, it’s not even remotely scientific. Science is supposed to invoke curiosity, observation, and judgment-suspended inquiry. Instead, this kind of attitude (which appears to be quite accepted in modern medicine) is actually frighteningly similar to the cognitive distortions apparent in various mood disorders and mental illness — not the rational mind of the functioning scientist and problem-solver.
But, back to the patient — people who are ill and in pain are sometimes not in the best position to make decisions about their health, and they are not to be blamed for that, nor labelled as “noncompliant” (which, to me, is basically shorthand for “BAD DOG!”) Were these same people well (as most of us doing the armchair philosopher thing here are), they’d likely make excellent health decisions, no sweat. But when they can’t, they need to be helped and cared for (in as non-patronizing, non-condescending, empowering a way as possible) until they can get to the place where they ARE able to look after their own best interests again.
And that’s, supposedly, why the caring professions exist in the first place. Not to count beans and issue judgments on who deserves care and who doesn’t.
Shark infested waters? Nah.
Some of what you said seems to be just a slightly different perspective but parallel to what I was trying to say, I think. I’m not so sure that you are advocating a perspective that is incompatible with what I was saying…just an ideal versus what I perceive is the reality of what people in healthcare deal with. Correct me if I’m wrong.
While what you’re outlining would be ideal, I think the reality is what you already acknowledged. The pressures of limited resources. Doctors…medical staff…are people, and people probably don’t see their lives dedicated to just being defined by that career choice, and if they don’t think that what they do will make a difference how do you compel doctors and staff to put 100% into every patient that walks through the door? The effect is what we see. Staff prioritizing their efforts on patients that give the impression that they will follow through with the instruction while writing off the ones they think are going to just waltz off and do what they want to do.
It’s just not practical for them to do the extra paperwork and effort of following up with everything else they have to do if they are pretty sure the patient is just going to nod and walk away while continuing to ignore them.
It would be wonderful if we could have the system you outlined. I just think that medical staff feel they have enough paperwork and workload that it’s not practical to do that and most hospitals are understaffed for what you’re describing.
I also don’t know how many people would have the energy or devotion to the field to give the kind of compassion for everyone that comes in through the doors. The doctor that originally referred me to the bariatric office…I think I blogged about how I went into his office, sat down, he rattled off the checklist of comorbids I was experiencing, then immediately said I’d need surgery before shuffling me out of his office (I think it took about six minutes from going in to leaving)…was recently told that I had gone through with the surgery by a relative of mine that was having a followup with that doctor. He seemed surprised that I had followed his instructions all those months ago! I felt as if I was another patient herded in to see him and probably just another anonymous face that he’d tell what his advice was before leaving and not coming back to see him again; I can understand that if that’s what a doctor constantly encounters every day from the majority of his patients that he wouldn’t bother getting invested in working with the patient.
Of course I don’t work in the medical field and you do, so you’d know whether my speculation is more reality or fantasy!
One of the books that illustrates this entire conundrum very well is The Spirit Catches You, and You Fall Down, by Anne Fadiman. If you’ve never read it; I highly recommend it.
It’s main thrust is that the patient – the person that the health care provider sees in the moment of delivering care – is just the role that person is in at that time, and it’s just one role. It is not the sum total of that person’s life or being. There is so much more to that person than “the patient”, and without taking time to really explore that, it’s impossible for a health care provider to know what the other roles and circumstances are, and how they intertwine, intersect, and impact each other.
It’s not often easy to tease out the intersections of a person’s life, but I think it’s difficult to treat someone truly well unless the effort is at least made. We have to treat each other as HUMANS, with all that entails, instead of just “doctors” and “patients”.
That’s pretty much EXACTLY what I’ve been trying to say, Wench. Thank you for saying it in far less space than it took me!
This is also exactly what I think of when I hear the word “holistic.” I wish our healthcare practices were really much more holistic than they currently are. It might actually save us some money, not to mention grief and pain and time.
You’re welcome :) Good to know that year of work towards an MSW taught me at least a little something!
As for being holistic, that’s actually what drew me to the field of social work in the first place – the fact that it absolutely emphasizes looking at the person’s entire life, not just their problem. That book was required reading for one of our foundation courses first year (although I’d read it previously).
Do you know why I find really interesting about this original rant , it’s the line about how some people end up with kidney problems due to “accidents”… This is one of my favourite bugaboos in arguments of this type. I can understand it must be frustrating to treat people who could be doing more to help themselves, but if you look closer it isn’t really about that. Sure, letting one’s diabetes get out of control is often the patient’s fault (not always, as has been pointed out), but then again, most accidents have a cause too. Was the person at fault for the accident? Were they an innocent by-stander or did they run a red light? Because if this doctor (or nurse or whatever) didn’t bother to find that out, then frankly, they’re full of shit, and don’t actually care about whether people “did this to themselves” or not. They just don’t like the way certain people live and are deciding based on that, not on ultimate responsibility, whether this person deserves care.
I have a friend who doesn’t much like fat people (technically, she’s the wife of a friend, but I end up spending a fair amount of time with her). She thinks that we’re costing the healthcare system too much money (not me, of course, because I’m “not THAT fat” Yeah, ok). Problem is, her husband and mine spend a LOT of time out doing incredibly insane outdoorsy type things (actually we all do, even fat old me). Sometimes they get hurt. Occasionally they even go to doctors. They are, in part, why insurance premiums go up. One friend of ours actually ended up needing a Coast Guard rescue (luckily my husband wasn’t there that day, but it’s not out of the realm). Image what that did to our taxes! But none of that bothers her, because it isn’t really the cost that bugs her. She just doesn’t like fat people and cost is a good excuse. To me, it’s all the same. We all make our choices as we see fit and the guy whose job it is to provide medical care doesn’t get to decide whether our reasons were valid enough.
I’m a huge bike racing fan and so far 6 or 7 guys have dropped out of the Tour de France due to injuries. Most get back up after a crash continue to ride through the end of the day in case the injury is minor enough to let them stay in the race. It’s only that night that they get xrays and find out they broke a wrist or collar bone. Do you suppose this doctor would look at them and say, “You idiot, what were you doing riding on a broken collar bone! You don’t deserve care!” Frankly, I’d have more respect for him if he did, but somehow I doubt it. This isn’t about blame it’s about prejudice. Or at least that’s how it looks to me.
To just about everything you said — yes. Yes indeed.
I wonder how that doctor would react if he himself had kidney disease and he knew he had to live with fluid restriction and thirst for the rest of his life.
Sheesh.
Oh yeah. Of course I can’t know what I’d do in that situation, but the likelihood I’d say “to hell with it, why go on living if it’s like this?” and drink as much water as I pleased is very high. Expecting people to go against their basic biological drives long-term doesn’t really seem like a solution at all…
As a Dietetic Intern who has already completed my clinical rotation, I can completely understand the points this person is making. Sometimes you really just want to give some people a good tongue lashing. It is very frustrating when you are trying to help someone and they don’t want to hear what you are trying to say. Especially when what you have to tell them is important and can improve their quality of life. The renal diet is quite restrictive but the people he is talking about aren’t struggling with dietary recommendations, they are completely disregarding them. I don’t see this person as having a God complex, just frustrated with some patients.
I guess my question is, then, why are the patients disregarding the recommendations? What is the problem there?
It is entirely human to get frustrated and to want to just toss up your hands or yell at people and blame shit on them. Totally human, totally understandable.
But at the same time, this kind of attitude is totally incompatible with a caring profession, and whether you’re directly acting on those feelings or not, I think it can seep into your practice in invisible, yet potentially harmful ways. See all the Yale studies on anti-fat bias in healthcare, for example.
And how strong is your desire to help if it’s really a case of “My way or the highway”? That’s not helping, that’s being a tyrant.
I do realize that the US healthcare system (I’m assuming the MetaFilter commenter is American) is set up in such a way as to penalize doctors and healthcare workers for spending a lot of time with patients, but “helping” implies some degree of collaboration and being supportive. Ordering people around and then writing them off for not doing exactly what you say is working from the ego, not the heart.
I always say to people who complain about things like this: What’s wrong in your life that you are so angry about this?
To be so angry at a group of people would suggest to me that original poster really isn’t happy with his life or his choice of job.
The thing is if there wasn’t illness in the world than this person wouldn’t have a job. My suggestion would be that instead of focusing and getting all upset about things you can’t change (a persons personal behaviors and inability to change) or things that aren’t your job (thinking about where the funding comes from) I would focus on what is your job, which is dealing with the patient in the best way possible. That’s it. That’s the job.
When you start thinking about all the other stuff you can’t control you lose focus and you lose your ability to work efficiently.
It’s called being PRESENT right now.
That patient may not be able to change but there is one thing you can control and it’s your own response. In my experience being frusterated and angry are great ways to build up illness and stress over the years! Think about it.
I am glad to see so much discussion but this question comes up in my mind over and over again:
“at what point am I non-compliant?”
If I seek a second opinion am I non-compliant with the first doctor?
If I research my treatment options and decline a specific treatment because of the risks am I non-compliant? (even if there are other treatment options available?)
At what point is the line drawn where I become an obedient and deserving patient vs a willful jerk who has a death wish to satisfy my own comfort?
And I hope this doesn’t come off as snarky – because I feel this is an important issue. I have had experience with doctors who were incompetent and had I blindly followed the treatment they had given I would be dead. I had a doctor who prescribed a Spironalactine to treat PCOS and within 2 hours of taking my first pill I had excruciating pain in my left elbow accompanied by a red rash that was spreading rapidly. When I called my doctor they said it was “mild” and would “go away”. After the pain worsened I went to the ER where I was immediately treated for an allergic reaction. The ER doctor said my kidneys were shutting down and had I continued the medication I could have died.
So – even tho the doctor “thought they had the answers” to how my life would be better, was I non-compliant? Ya darn well betcha I was!
That’s an excellent question, Carolyn. I’m going to have to think about that.
I know of at least one situation where complying is ‘non-compliance’.
There are some health professionals who think anyone who went off ADD meds after age 18 is non-compliant. Even if the medical professionals involved in that person’s life would not recommend or, more importantly, prescribe the medication anymore.
It would be interesting to know what percentage are truly non compliant. It concerns me that these people the writer mentions are getting sub-standard care.
I didn’t think about this until now, but the medical provider probably considers being fat alone as non compliant.
I just wanted to point out that with recommended (and, unfortunately, required!) dietary changes, non-compliance could be largely a case of “the doctor who cried wolf.”
Doctors are always handing out, recommending, and administering weight loss diets that either don’t work or don’t work permanently, and that sometimes do harm. For example, low calorie diets can cause kidney stones and (of course) all the symptoms of starvation. When they hand us these diets, they say things like “if you don’t lose 50 pounds, you’ll have diabetes within five years.” The first time this happens, the patient may go on the diet, lose 50 pounds, gain it back again, and not get diabetes. After a few times, no significant weight loss occurs. Still no health problems. Finally, 5, 10, or 15 years later, the patient says “screw it” and doesn’t try the diet. Once again, no diabetes, no weight loss, and the patient has learned that the doctor is full of shit. If the patient is forgiving, then he or she may still trust the doctor on non-dietary matters, but there’s no doubt that the doctor has lost some credibility.
Because of this, a large percentage of people have probably come to view the dietary advice they’re given by doctors as bullshit, or at best, optional.
Michelle, I’m having trouble reconciling a few of your comments. First you said:
“In my mind, the onus is on US (as healthcare practitioners) to offer good treatments. If a patient is incapable of complying with that treatment, then, in my opinion, the problem more often lies with the treatment than with the person.”
And later you said:
“Well, unfortunately, in the case of kidney disease, it’s true that the fluid restrictions are there for a reason. And not just to reduce the frequency of dialysis needed, but to help ensure proper electrolyte balance, as well, I believe. The latter consideration can be fatal if not heeded.”
So it seems that you’re saying that we can’t blame the patient for non-compliance, that it’s the fault of the treatments. Then you say that sometimes these treatments are necessary and ignoring them can be fatal.
I do understand what you’re saying about a patient’s life circumstances making it hard for him to take proper care of himself. But how can you say that a treatment is bad, so lets not blame the patient for non-compliance? As I’m sure you know, medical science isn’t perfect. We do the best with what we’ve got, and if there’s a proven, effective treatment that many patients DO manage to stick with, how can you blame the treatment?
I’m not trying to be rude or obstinate; I hope you can see why I’m having a problem reconciling your 2 statements. Thanks.
It is true that blaming the patient right out of the gate for noncompliance is unhelpful.
It is also true that some treatments are totally necessary in order to save a person’s life.
Not all treatments with which people find hard to comply are BAD, per se. They may be effective treatments that are implemented poorly or incompletely with regard to the patient’s actual life circumstances — like telling a very thirsty and uncomfortable renal patient to simply STOP DRINKING when they’re thirsty, without offering any other ways to keep them comfortable, such as treatments for dry mouth. (However, in the case of dieting, I do believe it is a bad treatment, in that it is risky and mostly ineffective.)
These two statements (that we shouldn’t blame patients for noncompliance with treatment, but that many treatments are helpful and necessary) are not irreconcilable — I guess what I’m trying to say is, if a patient is having trouble complying with something that is necessary for survival, then the onus is on the healthcare practitioner to find out WHY, and to help alter the patient’s circumstances in order to make it possible for them to comply. Not to blame the patient for being bad, bad dog and wash one’s hands of them.
Does that make sense?
OK, I think I understand you a little better now. Thanks for the clarification. And I agree- doctors shouldn’t just wash their hands of a patient who isn’t following treatment. It’s important that they find out WHY and come up with some alternatives and/or workarounds. Of course, you’re always going to have some patients who can comply, but just won’t- either because they’re simply obstinate or because they think nothing bad will happen to them, and “it’ll turn out OK in the end.” In that case, there’s just nothing you can do- you can’t FORCE someone to do what’s best for them. I think that was the point the original poster was trying to make, and I can imagine that those cases must be very frustrating indeed.
Interesting topic.
What a great discussion. Judgmental and prejudicial attitudes are extremely common among health care workers, just as they are among every other profession, and the US public at large. Blaming the victim has become our true national pastime. I’m fortunate to have an MD who actually listens to me and discusses options for care. But I can’t count the number of doctors I’ve seen in my life who treated me as if I weren’t worth it. I don’t understand why anyone would be a primary care provider if they don’t like people. There’s plenty of room in research after all.
“First do no harm” is a motto we should all adopt, regardless of our jobs. I like it almost as much as “be excellent to each other”.
“Be excellent to each other.”
Truly one of the great aphorisms of all time.
Wow, there are some really insightful comments here!
I just wanted to chime in about a friend in Medical School who is deeply concerned about her peers ability to practice medicine ethically and effectively because of their seemingly deep-seated antagonism toward pretty much any non-perfect patient. The fatties, the smokers, the people who may have merely experimented with drugs at one point, the sexually active, the queer, etc. We often discuss the specific comments/assumptions of her peers and how they pretty much come down to fears about mortality and how we often think “X only happens to ABC people, not me–I’m a good person, I exercise, I’m not a glutton, etc.” She said that the first class in which many of her peers had to recognize that not all illness was a result of individual sin was a genetics class in which several of her peers were REALLY SURPRISED THAT “NOT ALL DISEASES ARE THE PATIENTS FAULT?” Its been kind of scary to learn about her jock-like, asshat med school peers. At least she’s their to influence them–to say, “hey, that’s out of line” when one of them goes on a tirade ab0ut how stupid and ignorant and non-compliant X patients are. These biases they carry around are really impacting their capacity to provide medical care. It’s about the myths we tell ourselves to get to sleep at night, that we and our loved ones are safe from disease because we’re “good” or the Christian Fundie who protests the abortion clinic but sneaks into that same clinic the day her church isn’t protesting because her abortion is deserved, but every other woman’s is a result of being a hussy. Yes, there are frustrating individuals one meets in the course of the professional life–my sister’s a social worker, my mother a teacher, I’m in non-profit; we all have encountered people whose lives would be easier if they X, Y, Z, but where they are today is a matter of a complex interaction of experiences, family life, genetics, location, education, etc. that I can’t fully understand.
We often discuss the specific comments/assumptions of her peers and how they pretty much come down to fears about mortality and how we often think “X only happens to ABC people, not me–I’m a good person, I exercise, I’m not a glutton, etc.”
EXACTLY. Fears about mortality, and subsequent Fundamental Errors of Attribution.
Diseases are complex issues with often complex, multifaceted causes. It would be so nice and simple if we could just attribute them to immorality and stupidity — our brains would like that so much better, because then we wouldn’t have to grapple with ambiguous, confusing reality. And we could dispense with the inconvenience of compassion altogether.
Unfortunately, reality is a supremely noncompliant patient who doesn’t bow easily to our intellectual or moral preferences.
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