Tired of Being Labeled "Noncompliant"?

Is anyone else really, really tired of doctors, nurses, and medical technicians calling them noncompliant, even when they are pushing themselves to do everything they can?

I'm on dialysis three days a week, supposed to do three and a half hours each time, but, after about two and a half have passed, each time, my body starts being in terrible pain, and my diarrhea comes back. I can't do anymore, and I keep myself quite healthy otherwise. This is not a post asking for advice. My question is, even when I take good care of my body and its levels in every other way, I am still called noncompliant by the people at the center.

I was born sick, and I grew up sick. I went through decades of, every time I tried to speak up and tell my family and doctors that I was tired of living like that, being always answered with, "I don't want to hear it". Added to that, many treatments felt like molestation. That's how I experienced them.

This is what I tell nurses, doctors, and technicians when they ask why I am so anxious and irritated around, and so distrusting of, medical professionals. Recently, there was a woman tech who teased me about it. Teased me about my severe trauma and feeling molested. I reported her, but I'm sure the social worker just threw my report in the trash, because nothing ever came of it.

Does anyone else experience things like this? Does anyone else feel that they are trying their best to do what they can in medical treatments and are still called noncompliant because they can't do everything? I'd be interested in hearing what others have experienced.

I am seeing a good therapist, but, no, my mental health status is not fine. I am still very close to choosing suicide. My intellect is intact, I think that's what you meant.

A child who suffers invasive medical procedures throughout their developmental years come to believe that they only exist to be a medical experiment. They need distance from medicine, or suicide is extremely likely.

I'm a retired nurse as well as a CPer for many years and like Judy I tried to avoid using the "non-compliant" term for many reasons but mostly due to it not specifying intent. A comatose patient is in the medical sense non-compliant? Of course he was just as a 1 yr old is after fighting you while trying to draw blood! Yet the same statements are made or rather used for belligerent alcoholics or addicts who are not functioning on reasoning,spinal patients who don't want to be injected with anything since they've found no relief from them,or the kidney patients who have been cathed since childhood and feel molested by all rights. Should we lump everyone into the same category? Absolutely NOT. I have to say that in my 25+ years on the floor I honestly made every attempt to honor a person's right to refuse medical care even when it went against everything I knew and believed. Sadly not every healthcare worker functions under the belief that you have a right to determine what care if any you want to be subjected to.

The law overrides the morality unfortunately and healthcare workers walk a fine line between right morally and wrong legally and the extent of responsibility they have in your refusal of treatment.

I cannot say this enough and yes especially for dialysis patients as well from a personal experience of having a court rule that dialysis is in fact a life saving measure and does come under the rules of a Do not resuscitate order. Make sure your healthcare wants and needs are known to all,make a living will,appointment a healthcare surrogate,one who will carry out your wishes and family members are not a good choice since their emotions can get in the way. It's vitally important to do this and do it right,be specific even down to whether you want to be hydrated during the end of life journey,if your dying from anything other than thirst water won't save you but if your denied water your process may be speeded up and extremely more difficult. Get help with ensuring the right things have gotten in your living will by a competent attorneys who specializes in the kinds of things.


I am by no means advocating this statement nor encouraging you in any way to even consider it but want to be clear that dialysis is in fact a life saving measure and can with a DNR order be ceased by you or your surrogates or third-party healthcare person.

I am truly sorry for your life being filled with horrific medical experiences and for the trauma you have undergone from a life of illness and medical conditions. I hope you find some measure of peace in whatever life choices you make.

How are you doing today?

JamesBW said...
If you refuse a medicine or treatment, are you labeled noncompliant? Does it matter? Just asking, because I've refused things lots of times in the hospital or to a doctor, "prophylactic" antibiotics because I think they're overused, chemotherapy because I didn't want the side effects, whole brain radiation, pain medicines, etc. The doctors or nurses might spent a few minutes trying to convince me, but in general, as soon as I said I was refusing it, they dropped the subject and went on.

Whatever I was labeled, it didn't seem to affect how I was treated otherwise. I know some may think of me as a difficult patient, but I figure it's my body and I've got to suffer the side effects or problems if I'm in that 3% or 30% risk. Right now I'm refusing the next two treatments for my otherwise fatal brain mets (whole brain radiation that can cause dementia over time and a drug withy nasty daily GI side effects) and asking to skip to the third option, an easy-to-handle drug not quite FDA approved but in final trials, and my insurance balked just a little and my oncologist whines just a little that "You really ought to..." but they're taking it well and setting me up for the trial.

Nategerdney, is it just the label of "noncompliant" that bothers you? Or are you being given other medical treatment differently because of it, such as dropped by a doctor, not offered treatment again because you didn't (couldn't) complete the previous treatment, that kind of thing?

The teasing is horrible and just the opposite of what a genuinely and deservedly anxious patient needs. I've heard nurses talk to other patients in a teasing voice to "cheer them up" I guess when we're all waiting for a procedure, and I cringe, thinking how I used to feel so degraded being talked to that way as a kid--and I was lucky enough not to have health problems when younger, just the usual shots and stuff. But it still took me a while and reassurance from my wife that I would be taken seriously as an adult. And so far I have been, but I'm lucky not to have the hospital trauma that others have had and so am not dealing with that extra layer of anxiety too.

So, after rambling on, guess I'm wondering, like Vickie said, does it matter if there's a noncompliant label, as far as access to other treatment, insurance, etc.? Nategerdney, you've got a legit reason for not completing dialysis that you could explain logically to anybody, and seems that if you ever need to justify the label, you could.

Well, that's the thing - I have explained my reasons, logically, multiple times. I have explained that I am doing all I can. I don't know if I'm considered noncompliant overall at the dialysis center, but certainly a very difficult patient, and when I try to explain the reason for that, I get the usual "I don't want to hear it".

What I go through in dialysis is quite different and harder than usual medicines and treatment I've had to endure. It's just that there were so many, and my feelings not validated for so long that, eventually, I had to say no to a few. Yes, I was called noncompliant for that, but my refusal was a long time coming, and should have been easily predictable.

I don't blame you at all for refusing the brain radiation. It sounds terrifying, and yes, side effects can cause just as many problems as they are meant to solve (and I mean meant to solve, not that they necessarily do solve).

I'm really just tired of docotrs and nurses using the 'noncompliant' label as an excuse to not consider what the patient is going through and trying to deal with. Doctors and nurses and technicians chose their occupation(s), but patients did not choose to be ill. I think many of them forget that, and don't look at the whole picture.

A couple of years ago, I started having terrible backaches and belly pains. I talked to my nephrologist and dietician about it, and I was told that it was probably lactose/sucrose intolerance. That didn't make any sense, for reasons and evidence that I brought to him. He said "I don't want to hear it", and I tried to adjust my diet to see if it might work. Less than two months later, the intestinal cramps got so bad that I couldn't eat, drink, or even sleep, and severe adhesions from past (many unnecessary) surgeries had been the cause. The doctor never admitted his mistake, and even lied to me that he had thought before it was adhesions.

I don't tolerate crap from people like that anymore. I'm tired of being screwed around with.

Post Edited (nategerdney) : 7/24/2015 10:15:45 AM (GMT-6)