Looking for Alternative Terminology for The Phrase 'the Patient Refused …'

GnarlyKnuckles on 30/05/2019 - 00:02
Last edited 30/05/2019 - 09:50 by 1 other user

I am a medico and I am frequently tasked with reviewing prospective journal article drafts generated by colleagues. I have always been a bit irked by the standard terminology used in journal articles/reports to state that a given patient (in a case study for example) decided not to opt for a certain course of treatment. The current convention is to state that that patient ‘refused’ that course of treatment. I think that conventional wording is outdated, and misrepresents the contemporary situation.

At least in countries with reasonable healthcare systems, patients of sound mind and under no duress do not ‘refuse’ anything. Instead, their treatment options are presented to them and they make their own choices as to what to decline, and what to opt for. In a sense, this is quite the opposite of ‘refusing’ anything.

Getting back to my initial point, I am not intending to open up a hornet’s nest of feverish debate about ‘right to choose’ or the state of healthcare in Australia. I am actually just asking what your opinion is about the standard terminology currently used in medical publications to state that a patient decided not to opt for a certain treatment option. Currently, what is usually published is that the patient ‘refused’ the treatment. I think ‘declined’ (or some similar word/wording) would be much more appropriate.

The last thing I will add is that ‘quibbling’ over what terminology is the most ‘PC’ is not something I would usually do. For example, I personally have no time for this whacky (yet unfortunately rapidly pervading) ‘movement’ that holds that it is not appropriate to use the words ‘cancer patient’, or ‘influenza patient’, etc … I am absolutely genuinely interested in anyone’s opinion on the ongoing use of ‘… the patient refused …’ in the medical literature though. To me it seems extremely outdated/misrepresentative.

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Comments

  • DukeNinja on 01/06/2019 - 10:04

    The patient "chose not to…"
    The patient exercised their right to not…

  • haemolysis on 01/06/2019 - 12:49

    As with all semantic debates: sometimes when you can’t change the word in the sentence, you have to instead allow the word itself to be changed.

    That is to say, if the medical literature is WIDELY using the term without implying coercion: then the meaning of the word “refused” does not imply coercion.

    That’s just how language works. It’s always been changing. And there will always be some stragglers worrying about what the word “used to mean”, “really means” or how it’s explained in a dictionary or other technicality. Meanwhile, the world has moved on.

  • AntonioSantino on 01/06/2019 - 23:25

    The patient
    - chose an alternative…
    - disregarded my considered advice
    - elected to pursue alternative remedies
    - in a moment of sheer lunacy, chose to ignore the only rational course of action as advised by me, and elected to pursue their own pathetic misinformed, ill-advised ideas

  • g452 on 01/06/2019 - 23:49
    +1

    OZbargain. Australia.

    The patient responded "yeaah….naah"

    • xoom on 02/06/2019 - 09:40

      Oh yeahhhh.. naaah.

      Seems like a legit response

  • Milkywayss on 02/06/2019 - 09:38

    “Opted for other/no treatment”. Or declined.

  • DavidFong on 02/06/2019 - 12:24

    Perhaps it would help if you considered which language would look most neutral if the health care provider was doing the 'refusing'?

    For instance, within the same consult, my notes might look like this…

    "Recommended phyiotherapy, exercise and psychological counselling.
    Patient 'refused/declined/opted for alternative option X'

    Patient's preferred alternative option was repeatedly asking for [insert drug of addiction and abuse].
    Patient request was 'refused/declined/opted for X' by myself."

    In a journal, I think the word 'refusal' would be quite appropriate to describe what the health care provider is doing. But in my
    own notes, that might sound prejudicial (and I wouldn't want to imply that…).

  • mshanann on 02/06/2019 - 12:33

    patient declined the suggested treatment
    patient rejected the suggested treatment
    patient dismissed the suggested treatment
    patient opposed the suggested treatment
    patient discounted the suggested treatment
    patient disapproved the provided recommended treatment and sought …
    against our advice patient sought an alternative treatment option

  • [Deactivated] on 02/06/2019 - 21:20
    +1

    Instead, their treatment options are presented to them and they make their own choices as to what to decline, and what to opt for.

    But are these informed choices?

    According to this study only a minority of patient decisions are actually informed:

    Discussions leading to clinical decisions in these primary care settings did not fulfill the criteria considered integral to informed decision making. Physicians frequently described the nature of the decision, less frequently discussed risks and benefits, and rarely assessed the patient’s understanding of the decision.

    Many patients would have limited health literacy which is a marker for vulnerability and a risk factor for poor health outcomes.

    Nit-picking over the most PC terminology to use in medical journals does not an empowered patient make, unfortunately.

    • Pricebeat on 02/06/2019 - 22:31

      "patient refused" phrase isn't just used when a patient is making life changing decision. It's often used for example when a patient refuses certain medication. ie: apprients, because they had already used their bowels. There is actually an abbreviation on medication charts that refers to refused as an R in a circle.

      • [Deactivated] on 02/06/2019 - 22:39

        "Patient refused" was used here for a patient refusing life-saving surgical treatment.

      • [Deactivated] on 03/06/2019 - 09:24

        Did you edit your comment before I replied?

        • Pricebeat on 03/06/2019 - 09:50

          Nope

        • [Deactivated] on 05/06/2019 - 06:38
          +1

          Did I edit my comment before I replied?

          ? I haven't even written it, yet :(

          Baulked variously at linking this in maybe appropriate threads. A difficult call on all manner of information and detail, in effort to help.
          Anyway, it is a great book. Some useful controversy ensued after it was published.

          At least read a transcript of an interview he did, here, or listen to the audio -
          https://www.abc.net.au/radionational/programs/healthreport/t…

          Died four years on from blood clot on flight from Sweden, which was great pity.

          Vale Darthie

          Valhalla Vets do recommend ectoplasm/kibble mix, when feeding Ghost Cats.
          Similar for Ghost Dogs.

          Several great tracks on each her first two albums. Sweetheart of girl.
          Ghost of a Dog
          ShootingRubber Bands At The Stars

          Enjoy those.

  • CalmLemons on 02/06/2019 - 22:31

    The patient said 'no'. End of story.

    Most people want decisions made for them, they want the best choice, people are lazy. They want to put the responsibility on someone else. To be truly informed, is, to say the least, impossible.

    I don't believe we need to write an article or have someone do their PhD on this.

  • nurbsenvi on 03/06/2019 - 02:57

    More contemporary and accurate term would be
    Millennialed because the patient acted all opinionated and shit and hurt my sense of entitlement of easy work life.

  • Orpheon on 03/06/2019 - 09:16

    "The patient was disinclined to acquiesce to the request."

  • TimeWaster on 03/06/2019 - 13:21

    “The patient declined oral analgesia”
    “The patient declined a PR exam”
    I’d say these are pretty standard examples of common usages of ‘decline’ but I guess it just differs clinical to clinician.

    This would be like arguing that the patients presenting ‘complaint’ is not necessarily a complaint but probably more of an ‘illness’ and that we should push to use HPI instead of HPC when we chart things, but I don’t think anyone really cares about these semantics tbh

    • GnarlyKnuckles on 04/06/2019 - 03:06

      You are right TW, and 'complaining of' is another outdated misnomer that I staunchly avoid in any report I compile, and I 'edit out' of any report a colleague asks me to edit. Mostly patients humbly describe what they are experiencing, and they are almost apologetic while doing so. The word 'complain' or the phrase 'complaining of' is simply completely misrepresentative. I state what patients 'report' when they present, or I state what they 'present with' (depending on the circumstance), or what their carer reports that they are exhibiting; in the event that the patient is not capable of reporting anything.

      This might all sound like I am overly complicating things just for 'sh*ts and giggles', but I can assure everyone that is not the case. Some above have essentially implied that:

      'Sure, the actual semantics/literal wording in common usage is technically incorrect, but it is a long-established convention so just roll with it'

      OR

      'Why change it now? Everyone in the field knows what it is SUPPOSED to mean.'

      OR

      Other sentiments that assume that everyone is a native English speaker.

      I have fielded hundreds of queries over the years from countless ESL scholars trying to make sense of why a patient was reported in the literature as 'refusing' something when it clearly did not fit the context, or why it was stated that they were 'complaining' about something that they already knew they had, etc. … and that has convinced me that the English medical terminology needs to be cleansed of these out-dated (and blatantly misrepresentative) turns of phrase. In just the last few decades, English has 'won out' over all other languages as the 'international language of science'. Henceforth, if any researcher anywhere in the world expects their work to be published, they have to publish it in its entirety, in English.

      Given that, native English speakers should not be so pompous as to expect ESL doctors the world over to 'come to terms' (no pun intended) with/understand/'fall into line with' outdated and semantically nonsensical misuses of English terms, in the field of medicine simply because 'that is traditional terminology'. English is hard enough to master as it is, for an ESL speaker. The medical 'profession' owes it to all 'stake-holders' (beginning with the patients themselves, and extending outwards in all directions to everyone else involved in their care) to 'move with the times' and ensure that the terminology used in the field is as literally (and logically) representative as it can be.

      I will end this 'rant' with my absolute disagreement with the recent emergence of what I believe is the extremely misguided view that it should henceforth be deemed 'politically incorrect' to refer to someone with any given medical condition as a patient with that condition. For example, there is now a large (and growing) body of medicos genuinely suggesting that it should be deemed inappropriate to refer to a person being treated for cancer as a 'cancer patient'. I do understand the sentiments underlying this 'PC movement', but I personally feel compelled to state that I find it fundamentally misguided, for many reasons. Proponents of this viewpoint espouse that it is 'not right to define someone by their illness', or 'label them' based on their illness. On a personal 'life-level' I agree with this entirely, but in numerous 'medical care'/research contexts I suggest that it makes absolute sense to do exactly that.

      Anyways, that's another issue entirely…

      • TimeWaster on 04/06/2019 - 10:47

        I get what you’re saying and I know a lot of doctors that feel a similar way (perhaps for different reasons) but certainly we can agree that it’s incorrect to use certain phrases (especially those that misrepresent the patient). I always try my best to avoid these terms and alter wording slightly if I’m transcribing for someone else, but I feel this isn’t a problem that can be solved overnight because we already have classes and training that teaches these particular terms (and still the problem persists).

        I’ve actually noticed that a lot of consultants care more about the patient labelling recently. Particular “diabetic patient” should be “patient suffering from diabetes” etc. to make it clear that the patient is the victim of a condition and that it does not define them. And it’s honeslty amazing how something so little can empower a patient so much.

        • GnarlyKnuckles on 04/06/2019 - 20:13

          Yo T-waster, re:

          '… “diabetic patient” should be “patient suffering from diabetes” etc. to make it clear that the patient is the victim of a condition and that it does not define them.'

          I 100% wholeheartedly utterly disagree with that entirely.

          If I refer to 'that brown cat', I am in no way making any sort of subtle inference that that cat is 'defined' by its colour alone. The same holds for all other adjectives. The same hair-brained notion could just as (il)logically be applied to, for example, the word underneath the symbol outside a public toilet door. Is 'Men' and 'Women' somehow 'offensive'/inappropriate, because it implies that everyone who walks through the relevant door is defined by their sex? I think not.

          Based on the whole 'patient is a victim of… not defined by… therefore we should not use the words "cancer patient" but instead we should use the words 'patient who has cancer', the wording under the little picture of a 'stick man' outside a public toilet should be changed from 'men' to 'Person who currently identifies as a man'. Clearly that would be totally ridiculous.

          There is absolutely nothing wrong with referring to someone with cancer as a 'cancer patient', if it is relevant to the context. The misguided scribbler who decided to launch a 'movement' a few years ago trying to convince everyone that there was, has done the medical community (and patients, and society as a whole) a real disservice; and created division and 'manufactured offense' where formerly there was none.

          Lastly, may I ask you a couple of questions T-waster?

          A. Re:

          "And it’s honestly amazing how something so little can empower a patient so much."

          What gave you the idea that it does/where did you gather this belief from?

          How many patients have ever said to you 'It's so much better when someone refers to me as "a patient suffering from diabetes" than when they refer to me as a "a diabetic patient"? My guess is, not a single one. When this topic first emerged a few years back/was made 'trendy' by peeps with no real issues to occupy their minds, out of curiosity I began asking any new cancer patients I was seeing whether they found the term 'cancer patient' offensive, if I used it during my discussions with them. Most of them did not even initially understand the question, because the entire notion that someone being treated for cancer should take offence at being referred to as a 'cancer patient' was so completely ridiculous to them. I asked at least 50, and only one person (who was, to be honest, a bit of a fruit-cake) embraced the idea that perhaps she should find it offensive. But that was only after I explained the whole 'argument' to her. Before that, she had not found the terminology offensive at all. That was a bit of an eye-opener. I realised then that this 'movement' is actually functioning to create/generate offense where formerly there was none… to breed division.

          B. I note that you advocate the use of 'patient suffering from diabetes' rather than 'diabetic patient'. Surely your terminology is arbitrarily applying a 'subjective judgement'/label/assumption that may well be entirely incorrect, and one that is not implied by the much simpler term 'diabetic patient'. I'm sure you know where I'm going here… you are assuming that the patient is 'suffering', when in fact they may not be suffering at all. Many HIV+ patients would not concede to your label stipulating that they are 'suffering' from HIV. Deafness is another good example here. While giving a lecture or tute I may refer to the fact that particular steps need to be taken when treating deaf patients for any condition they may present to the GP with. Your advocated label stipulates that I should erroneously refer to such patients as 'suffering from deafness. To my mind, that is very presumptuous of you. Most deaf people (particularly those who were born deaf/have never heard anything) do not perceive themselves as 'suffering' from deafness at all. They are completely content with who they are, and would be much more likely to take offense at being labeled as 'suffering from deafness' than being referred to as a 'deaf patient'. Trisomy 21 (Down syndrome) is another illustrative example. Downs patients are almost invariably unusually happy people, and they are usually very friendly and communicative. I have not looked into the relevant research for years, but I remember surmising a couple of decades ago that there must be a gene or genes on chromosome 21 that promote happiness; because peeps with three copies of that chromosome (instead of the usual two) are definitely 'generally happier than the average'! Not very 'scientifically put' I grant you, but I hope you can take my point. Downs patients are not necessarily 'suffering' from Downs. They just 'have it'.

          Hmmm, another 'rant' from me, this time on the whole 'cancer patient' vs. 'patient who is suffering from cancer' debate.

          I would be interested in the opinions of others on this.

          Particularly Dr Cat, and Dr J… who seem to have gone all silent all of a sudden (?)

          • TimeWaster on 05/06/2019 - 14:20

            @GnarlyKnuckles: This is quite a lot to unravel, I’ll try my best…

            The problem with using ‘that brown cat’ is that eventually the cat gets annoyed that you’re not calling it by name and giving it the respect it deserves. It’s simply become a statistic of cats that are brown. I hope you get what I mean by that.

            I’m sure there are people that would appreciate the fluidity they are offered with toilet signs like that, but let’s not get carried away from the point. I’ll try my best to address your questions…

            A: I used that particular example because I found it very true whilst doing diabetic clinics. Almost all the patients I talked to much preferred ‘Ms Smith is a 24 year old woman who has been diagnosed with T1DM since 11 years of age…’ as opposed to ‘Ms Smith is a 24 year old who has been a type 1 diabetic since 11 years of age’.
            Obviously both present the same information, but the first presents Ms Smith as a woman (and a person) first and foremost with the diagnosis as a key talking point rather than a defining factor. I’m not 100% sure how patient-facing your job is, but little things like this go miles to build rapport with a patient (something) that’s hugely important with something as chronic as diabetes. I guess your experience must have been different… I’ve found that the poorer medical compliance a patient has, the more they seem to care about these things, so I’ve taken it as a blanket approach for everyone just in case.

            (Side note: I think it’s because these patients felt they had been victimised by their disease, so they hated being addressed with it being the only ‘significant’ thing about them [which to be honest is true to an extent for our medical purpose]. It’d be like referring to people who had been raped by the person who had raped them instead of just the fact that they are dealing with the fact. Terrible example, but I’m not too sure how else to explain it to you.)

            B: I meant it just as an example tbh. If you wanted a blanket term I’d advocate, then it’s “…patient with a diagnosis of…”. Again, not sure how much face-to-face you have, but it really is just about reading the room and knowing when to remain professionally neutral or kind of subtly letting the patient know that you’re on their side against their ailment and you understand that it must be hell for them.

            Deafness is not a great example because it’s s huge issue… I mean, a lot of people even think they’re better off and don’t see it as a disability at all. There’s really a lot to unpack about that and probably best we don’t get into it haha

            Regarding the trisomy thing, I completely understand what you’re saying and I 100% agree with you. I just feel you might have used my ‘suffering from’ example a little too broadly (refer to ‘diagnosis of’ instead)

            I hope this answers a lot of the questions you have. I think the crux of it is that I do largely agree with you, but I just think that patients should be referred to as people with conditions rather than just conditions (at least on the patient-facing side of things).

            Thank you for this discussion, I’m happy to try and answer anything else you might have :)

            • Seedy seed on 05/06/2019 - 14:28

              @TimeWaster: Couldnt be arsed to read more then 3 lines. Name checks out from what i read.

              • TimeWaster on 05/06/2019 - 15:46
                +1

                @Seedy seed: Congrats on even getting this far
                Conversation must have laid the seed of curiosity

  • T1OOO on 03/06/2019 - 15:11
    +1

    Declined

  • TPbMe on 05/06/2019 - 18:00

    I’d prefer the word “declined” rather than “refused” to be used because of the connotations attached to a “refusal”.
    A simple example is: due to the high number of PRN medications my husband is prescribed that still need to be charted when an inpatient - his hospital MED records have many daily “refusals” recorded over a week which make him present as a highly-uncooperative patient. The initial observation by staff is of a patient’s non-compliance with medical directives.

  • justwaitingforamate on 11/06/2019 - 21:08

    Patient opted for a different treatment
    Patient did not wish to precede with suggested treatment protocol
    My favourite: Patient exercised their informed dissent
    or the tosser wouldn't listen

  • justwaitingforamate on 11/06/2019 - 21:30

    Just had more of a read through the thread, well done on being diplomatic Gnarly!
    There have been a huge number of assumptions made from quite a nuanced OP, and specified context and intent. People read what they want even when specifically stated otherwise.
    Yes I often read refused care in papers that are promoting patent centred/collaborative care model and think WTF
    My personal favourite is still "patient denied", as in patient denied opioid abuse.

  • [Deactivated] on 11/06/2019 - 21:58

    Am sure this is a post designed to flush out the medical doctors on ozbargain

    • GnarlyKnuckles on 12/06/2019 - 00:53

      Chuckle… for what purpose…? Free medical advice? ;P

      Appropriately, that is already available via 'bulk-billing' etc…

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