Wednesday, February 09, 2005

Regular colonist: relative medical

If you are or have ever been a medic, you will at some point become that most feared and disliked item, a medical relative. A medi-relly. Of course, the right of patients to request to see their own notes now has led to an inability to write: nice lady, annoying daughter. That was the role I played this time. Was quite nervous, stressed about it. You are in the bind of caring deeply that your mother gets decent treatment, and aware that you can use your inside knowledge to get a better-than-average deal, but also hesitant to invoke this preference, as is the doctor treating your relly. It even causes delay – due to the assumption that you will be over-reacting to her symptoms. Diagnosing a herd of zebras hearing hoofbeats out your window. (More likely to be mounted police sorting out football trouble where I live). Finally you tire of no action, that NHS lowest common denominator, and, ignoring your scruples, get your relly over-investigated and iatrogenically injured. There is no easy way to play this balance: talking over your unmedical relative, thus interrupting their doctor–patient relationship; yet unable to remain silent while they skip over symptoms that seem to clarify everything.

Mother and I have got it down to a tee though; we were like Morecombe and Wise – me the straight one. The poor doctor did his best to look welcoming – below consultant status, a registrar I think, a lot more bullyable than his boss anyway (the very same who cost me my sleep the last few nights). He kept appealing in his polite Spanish way to mother for some support – a neat reversal of the usual role. She in turn was most well-behaved: she charmed him; and talked nonsense. (After, before the door shuts behind us, Mother hisses: Hey! Not bad looking, or what?) She circumvented every attempt to wheedle a real symptom from her, or evince any evidence of concern about her respiratory status. I have invoked the spectre of my siblings. “I speak for them: we are worried” I declare, feeling the weighty responsibility of the spokesperson role – me, the doctor of the family. (No point declaring it’s not my area, I know nothing of asbestos/rashes/moles: they never believe you). The doctor with a hint of desperation appeals to mother: family pressure! he declares. He tries to turn it back on her: How do YOU feel? She laughs, coquettish, and says, oh, don’t ask me about it. I have no idea! He wants to know, is she worried, worried she will die?

I want to tell him that this cheery joking persona is a front: she has, with a great to-do, written her will most solemnly; is talking of stickering items in the house for after she dies; has become stuck on her own symptoms, inability to walk like she could, breathe, rush. It is dominating her life, I want to say. I am hesitant to interrupt again. “You seem to do a lot” he says to her. He doesn’t believe me. Trying pointedly not to look at me aware I have something to say. Knowing it is weak, I can’t resist piping up here anyway. I merely assert, “she does a lot less than she used to”.

Grimly, I imagine being on his side of the table. What a hopeless patient: and that daughter never shuts up when will they go? I hear the daughter come up with, “she feels faint sometimes” but gets shouted down by her mother: “no no, not FAINT.., STRANGE. I feel strange sometimes, and have to sit down before something happens.” Does this declaration help? I imagine him trying to write a referral form for the test I want her to have – some further investigation without going so far as an angiogram with its attendant risks. “Episodes of strangeness”. It won’t wash. She, meanwhile is bumbling on about her Spanish neighbour – it is merely coincidence as it is news to her after that the doctor was also Spanish – “she understands all English. Even IRONY” she tells the man whose English is so perfect she hasn’t noticed he isn’t English. He is keen to avoid another conversation with me, so ticks away our time by chatting about her neighbour. I don’t let him off the hook so easily. Naturally, as he is talking to us both, he engages my eye contact after a while. He is a nice bloke, fundamentally, and isn’t going to cut me, but also is a little afraid to take me on. I wait for eye contact and then butt in with a roll-call of her risk factors. I reel off family history, recent history and symptoms; I itemise the case for the investigation as if trying to pass Finals with Honours. Meanwhile she interjects with a minute-long diversion on the context of her first collapse, the park, what the weather was doing that day... I jag her knee with mine under the table and she mutes. I feel like a prosecution lawyer summing up my case and the key witness has said quite enough.

For relief, I allow him to set mother off again on some amusing digression, and when he next can get a word in, he outlines the further options, with the “do nothing” one at the end. I don’t allow him to finish. I am leaning forward, about to interrupt as he starts to itemise his list of possible tests when mother, her acting never far from the surface, interjects with perfect timing, “yes, I’ll have that one, thank you”. This rather floors him. It floors me. What a double act we have become. It is like I feed her the lead and she slams in the punchline. She waits for no further explanation, but, having been what seemed to be the ignored one in the power struggle of the medics, trumps us with her ultimate card: that of actually being the patient. I’ll have that scan, thank you. I was mistaken. She was not a witness, she was obviously judge and jury.

I see him write out a list of her risk factors and symptoms in the cramped space on the form and try to read upside down. Is it my summing up, verbatim? It amuses me to think so. He is halfway through, and thinks perhaps he will ask the boss – but here his niceness comes through. He looks at me straight and says, in a way that an English doctor, too afraid of his own status would have found difficult: the boss didn’t want to do more investigations, did he? I knew this full-well, hence our delighted seige of his good self. He is half standing, as if to go through and ask. I imagine the result: the boss will have none of our arguments especially second-hand. He will remain implacably true to his previous opinion that no more should be done. The registrar will have to deal with us after passing on this verdict. He is weighing it up. Whether it is niceness or a fear of taking us on, thwarted, that triumphs in the end, he sits down again. Gracious in victory, I offer him this: if the scan is negative, there is nothing more to do, is there? He reads this as the offer it is: do the test and we’ll shut up. For his own sake – I can well see the boss reading the notes next time, a little annoyed that his junior has reversed his decision, especially if the result is his predicted negative, and seeing through the slightly exaggerated letter the defensive junior will write to cover his tracks: I didn’t give in to pressure, her symptoms truly had deteriorated... He will hand notes over to said junior with glint in his eye: your private patient, I believe, Jeeves. Burdened, junior trogs off for his due punishment for over-using his admittedly slight powers of autonomous action.

We are, however, triumphant. For the moment, it is all that matters. We will deal with disgruntled boss and Jeeves when the scan is negative. If positive, I shall merely feel relieved to have found it before she drops dead having her feet done. It occurs to me that the request might bounce if they are very stringent: and it will bounce to the boss possibly who will throw it out, but these concerns are in the future. We celebrate our success in the dismal concrete hospital car park over a thermos of soup and hunks of salami before I waft back up to London, exhausted with the day’s work.


splogman said...

I have a daughter with Crohn's disease. She is 19 now and has taken over her management from us. I am an Otolaryngologist, and therefore I am a medical relative. Not only that, but I work at the same hospital as her gastroenterologist. He knows how distressed I get about my daughter's illness, and how worried I am that she will develop a fatal complication. This cannot make his job any easier!
Anyway, I read and appreciated your post. It is hard to butt out, even when this is (almost always) the best idea. My daughter has had 2 scares; once when her imuran made her anaemic (I was convinced, of course, that it was leukaemia) and recently when she was found to have genital warts with precancerous changes. She has had these removed, and her gynaecologist and gastroenterologist want her to stay on Imuran.
I found it extremely difficult not to intervene, but did not do so at my daughter's request. I haven't even used the hospital computer to check her biopsy and blood results. At the end of the day, it is her disease and she must manage it. And unless I have evidence to the contrary, I must assume my colleagues are giving her the very best care. To intervene makes her life more difficult and will certainly not help her doctors!
I guess our brains are hard wired to try and do everything for those we love because this helps us survive. Mother Nature has not bothered to develop a brain circuit to turn this drive off, even when it is in the best interests of ourselves and our relative.

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