Bioethics Discussion Blog: The Patient Patient: Tolerating Symptoms and Palliative Care

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Saturday, July 26, 2008

The Patient Patient: Tolerating Symptoms and Palliative Care

I pay you money to try and fix my head
I lie on your couch reveal what’s in my bed
You scribble in your pad
'Patient feels sad'
"Just take this medication
And if it fails to work
Then try a razor"


Well, the doctor-patient relationship need not go the way of the Val Emmich’s lyrics in the “Patient Patient”. But all patients should know that there are times when there is no cure and the patient has to patiently tolerate their symptoms. This does not mean there is no treatment. It does mean that there is presently no cure but it also should mean that palliative treatment is available. Palliative treatment represents “comfort care”, providing a systematic attempt to reduce the discomfort and the debility of one or more symptoms by medications but also by providing physical therapy, psychologic and spiritual support. Palliative treatment need not be confined to end-of-life terminal illnesses or hospice care. Palliative treatment can be extended to patients with symptoms of chronic diseases or even acute processes where definitive and curing treatments themselves are not available or where the use of such treatments pose a risk greater than the consequences of the illness. Patients should be informed and recognize that unfortunately even palliative treatments may not necessarily relieve all the symptoms completely, particularly if there is medical need or patient’s request not to be so deeply sedated that the patient is put into a coma. So.. patients may have to patiently, but with medical assistance, tolerate their symptoms

The “no cure” outcome is a difficult result for physicians to manage. In the past, from experience in childhood and the training in medical school, the goal of treating illness is cure. In the past, very little was taught about how to manage the patient’s symptoms when there was no cure. When a physician, after many attempts to cure his or her patient, without successful results, the issue in the doctor’s mind is “what’s next?” Would “next” be reexamining the whole illness and trying to establish another diagnosis? Would it be to do more tests or try out more treatments? Would it be to refer the patient to some specialist for diagnosis and treatment, thus also relieving the physician‘s intellectual and emotional burden? (The referring probably should have been done much earlier.) Or just to continue the doctor-patient relationship with the tone of “there is no cure but try to tolerate your symptoms.”--and hopefully not with Emmich’s words “..then try a razor.”


Though the concept of palliation was part of the management of patients in years past, it was untaught, informal and not a consistent medical practice. In recent years, with the development of the hospice end-of-life management, palliation has become virtually a science and medical specialty with a duty to spread the knowledge and guidance to all physicians. For more about palliative care, read the Wikipedia article on the subject.

What makes a “good doctor”? What makes a "bad doctor"? I think the answer would come from the patient about how he or she was treated when there was no cure. ..Maurice.

1 Comments:

At Monday, August 25, 2008 12:09:00 AM, Anonymous 26yrold medical mistake said...

oh, i have one better i made up. please excuse my typing, most of my fingers are dislocated, recently, or were a long time ago and healed wrong-untreated, both ac joints are loose/subluxing, as is my right sternoclaviclar joint.

based on the doctor bell poem;

doctor ick
hated the sick
and told them they were crazy
he only treated healthy people, because he was too lazy.

i won't quit my day job to write poetry, don't worry. and, abnormally enough you actually seem to care about patient feedback, which is weird, so applying that to you is hardly fair, however, when presented with a patient that will not be a quick fix, or even a certain fix, or the doctors have no idea what to do they will always turn on the patient, rather than admitting to their peers there is somethiing they cannot cure personally.

the most common responses are;

1. i can't help you, no one can, learn to live with it, maybe if you're lucky, things will improve [diagnosed uncurable; encephalitis]

2. well there are a lot of odd physical abnormalities here that should point to something horrifically life crippling, which is what you describe, yet i cannot identify this thing, so i will ignore all these odd test results and assume you are perfectly healthy, crazy, and a lazy faking person here to waste my time nd get sympathy for thngs you don't have, what's more i'll break confidentiality without your permission and tell all my peers you're whacko so if you get a refferal to them, they won't treat or examine you without bias either, because if they actually diagnosed you correctly that'd make me look stupid and you might sue me.

--------

i'm sure you can tell i found your blog by googling 'i hate doctors'.

patients require a lot of patience. after waiting to see if symptoms that interfere with daily life will go away, i typiclly see a gp, who tells me something pointless because they can't diagnose the problem. take my fingers for example, after complaints of stiffness, pain, restricted mobility, without even examining them; 'they're very long and pretty, you should play a piano' or after grabbing one and looking at it for a few seconds 'oh, that bit poking out there is purely cosmetic, you were likely born with it and only just noticd, even though it's been getting more pronounced suddenly with symptoms recently like you say, it won't hurt, like you think it is, it won't affect mobility or cause stiffness'. after many years of insistent comments, with things deteriorating, the patient might be lucky to get a referral, and will then be sent off to a specialist, who will make inane comments on the length of fingers wthout wondering that some genetic illnesses that cause such pretty overly long fingers, and the hypermobility they all marvel at, also cause dislocations. but no, the fingers re prettty, the patient can move them in all ways desired for evaluation, mostly, while wincing, with pain, and stiffness, and extreme difficulty, and overlapping ffingers that shouldn't be overlapping, and the fingers are all so nice and long, so it doesn't matter that the patient struggles to hold things or write. each specialist the patient is bounced to has a three to six month wating list, that's three to six months of watching things get worse, then a 'you're fine, really' or 'i can't help you, i don't know how' from the more honest ones willing to admit there's something out there they don't know about, then another few months before you even get another opinion, assuming it truely is another opinion, not tainted by specialists sharing opinions they werent meant to with their peers.

a decade down the track, the patient may finally be diagnosed, but in this case the treatment has alreeady come far too late. all that's left is for the last doctor to say 'i'm sorry, i can't help you now, not this late, no one can. learn to live with it, and if you're lucky, well,it might improve, someday.'

i realise it's a very specific 'example'
but most doctors care more for their ego tthan the patient, whether they have something curable or not, if it looks like it'll take effort or time, most doctors wash their hands of the patient. unfortunately, for people with similar genetic conditions the story is a very familiar one.

as a side note,if you would like to improve my opinion of doctors, just a bit, i've been trying to find some way or doctor/specialist to manage such a thing as preferably non surgical [as i heal poorly from cuts and wouns, having ehlers danlos syndrome] corrective splint retraining of joints that have been set dislocated for anything up to a decade.

i am an artist, through all the hand suffering aand physical impact it caused i could hardly stop my life until someone worked it out, so with slowly diminishing ability aand extreme pain i studied and became an artist. since i am only twenty six, am not fond of razors or giving up [obviously] and woulld love a solution, even partial, to the crippling hand pain and lack of use i have, some direction on this would be wonderfully appreciated.

 

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