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dubdobdeePURPOSE:
This arose out of emails with![[livejournal.com profile]](https://www.dreamwidth.org/img/external/lj-userinfo.gif)
catsgomiaow: it occurred to me -- and she agreed -- that some kind of advice digest of our various experiences might be helpful to others. What follows builds in the notes Dr Vick wrote for Becky and me when my mother started to become seriously ill about five years ago, combining our experience of what was helpful and what was a surprise to discover in this very stressful situation -- to start to put together a kind of database-discussion of what to expect, to plan for, to know to demand, especially in regard to things that you may not have been prepared for. As my friend (who works in a hospital, currently in the "interfacing with the public" side, which she is very good at) put it: "It is about looking after the patient, keeping the carer [ie YOU] informed, and being realistic in what is and isn't achieveable in one's care."
GOALS:
The most complicated thing to getting a balance right between too little information and too much -- partly because everyone is different; partly because just as an ordinary person, you aren't always trained to use the information you're getting. What helped Becky and me about the list Dr Vick wrote us back when mum's hospital visits started to be regular and often was that it was just very blunt and direct; it really helped us not be nervous -- and get bold quick -- about asking questions (of course we were always polite and reasonable; realising your job is the firm advocacy of the rights and requirements of someone in your charge can help you be firm without being strident).
ISN'T IT TOO LONG?:
As my friend who works in the profession said: "Essentially it is really really good but far too long. Remember, if someone is grief stricken, trying to be strong for the patient, and also trying to be the clear-headed one, to try and take in all this information will leave them mad. Condense it more. ..." Well, I'm putting it up as much as anything for people to read that AREN'T currently so much having to deal with this kind of thing -- if they can absorb some of it now, under a lot less pressure, then they are better armed to face these things when they do have to face them...
RESPONSES :
Comments welcome! Especially if your experience differs!
A: readdressing the balance (information, decisions, power):
1: ALWAYS MAKE NOTES
Ideally carry a clipboard or ringbinder, and write stuff down in it (even if yr secretly only drawing sad moomins). Partly because this slightly unsettles the bad sort of consultant or doctor, to your advantage -- partly because you can crosscheck things at different times, and think about them later, in the times when WAITING hangs heavy. ALSO: write down the names of all the doctors that you deal with, the sister in charge of the ward, and the nursing staff). this will be invaluable if you need to readdress issues and helps the Trust to pinpoint people quicker.)
2: KNOW YOUR ONIONS
Get to know the medical names for conditions, know the names of medication and procedure. Look up side-effects of medication on the net -- easy to get spooked here but honestly fore-warned is fore-armed. (However, be aware that not all people suffer the same side-effects, if any -- or indeed respond the same way to the same side-effects; so err on the side of caution on making your assumptions; and look down at Quality of Life, below, for ramifications of changes, wanted or unwanted....
3: PAPER TRAIL
Print out stuff from net and mark up with highlighters. Bring this with you. Write lists of queries and check them off as they're answered.
4: YOUR RIGHT TO BE INFORMED
Never be afraid to ask questions; don't be fobbed off. Get second opinions. Re-ask questions after time has passed; especially when situation changes. When things go unexpectedly -- particularly FOR THE BETTER -- don't be so relieved you forget toc heck why the bad prognosis turned out wrong after all!
5: EVEN CONSULTANTS ARE HUMAN (sorta kinda)
They have knowledge and experience you don't; so don't reject this JUST bcz they're being a d!ck. Listen seriously etc. But don't assume they're omniscient, even if they would certainly prefer you to. [EXTENDED FOOTNOTE BELOW]
6: SMALL BUT USEFUL FACT
Consultants are DOCTOR BROWN but surgeons are MISTER BROWN. They expect the Ordinaries to get this wrong, which makes it worth getting right; it turns you into a bit of an insider, and gets you slightly more respectful -- honest and insider-y -- conversations.
7: THE BALANCE
Essentially patients and relatives are called on to make decisions about
i. who makes the choices, and
ii. how much control you want, and how much you want to cede.
Obviously you DON'T want the responsibility of all of it, you have to trust and delegate (ie don't second-guess the anaesthetist!) but equally you don't want simply to put yourself in the hands of others without knowing where you're heading. And you WILL have to push a bit to find the place you're comfy in -- which can really go against the grain of yr personality, but can also pay off, because you find at the crunch that you're good at taking charge, and setting the agenda.
8: YOUR ROLE/RESPONSIBILITIES
Actually of course there's a similar balance to be found between patient and relatives, and among the relatives. Becky and I are really blessed, that we can carve up responsibilities very easily, and totally trust each other: other families are not necessarily so lucky.
9: PARENTS AS PATIENTS:
The dynamic of yr relationship will be changing somewhat -- you are becoming the parent of a parent in way, having sometimes to make decisions across your mum's or dad's; obviously this something most of us go through eventually, but if the parent is not that old or you don't have kids already -- or other vulnerable people you've had to be responsible for -- it can be a particularly complicated journey, with everyone used to the old roles and at least sometimes stubbornly wanting them back. DON'T be surprised at the range of emotional stages the patient will go certainly through – depression, anger, frustration, fear, shame, sense of humiliation and failure, guilt, refusal of dependency, making your burden harder in misguided attempts to make it easier... Our mum was very locked into her sense of duty towards dad, and to be honest was only persuaded to give up on this stage by stage as medical emergencies made it impossible: mileage will vary (mum was an only child with astonishing resources for taking the world on alone). (She also had a VERY complicated attitude to doctors; she always insisted to thought them very ridiculous and pompous, but then invariably got on really well with the exactly the doctors and consultants becky and i thought were the worst!)
10: SHARING
Talk about things to the patient's relatives (especially siblings) and close friends. They will have perspectives you don't have; uncertainty is honestly more of a burden than shared anxiety.
B: Exploring the alternatives : <--- this is important)
1: ALL THE CHOICES
Ask about the RANGE of possible treatments; make sure you're making a note of all of them and think about all of them seriously. Don't let yourself be crowded here -- the doctors don't have to live with consequences; you do.
2: PERSPECTIVES
Ask what to do to get a second opinion. DON'T be fobbed off. It's your right and it's a good way to get perspective. Find out which other hospitals specialise in this condition.
3: PROFILING
Check out a hospital's profile on various elements (hygiene, efficiency, MRSA): there's league tables available on the net.
4: QUALITY OF LIFE
QoL is -- as much as anything -- a matter of the sometimes slightly grim details we don't much want to talk or think about (this is partly a cultural and an English thing, Dutch Vick points out... ). How do we look; how do we feel physically; how do we feel mentally and emotionally; what will our routines become; what will the costs be (in time, in money, in loss of privacy, in whatever) and are they bearable...
5: OUTCOMES
For any given treatment, ask, if we go ahead, what can we expect in the following areas (and ditto if we decide against)?
i: side-effects (pain, dizziness, balance, flushes, hair-loss, weight-gain, sensory effects, mental confusion, mood change, mood swing, sex life, diarrhoea esp.if constant, bad breath... )
ii: regimes of medication -- is the mix of medications known territory; is it patient-manageable (or should the patient have oversight)?
iii: what aftercare is needed; what is available?
iv. recovery chances -- if we say yes and IF WE SAY NO
6: OTHER ADVICE
Talk to health visitors, social workers, psychologist -- they will know about things that GPs and hospitals may well NOT know.
EXTENDED FOOTNOTE: EVEN CONSULTANTS ARE HUMAN
That overbearing bullying mask is often just that, a mask. What medical professionals are protecting themselves from is a real potential harm, the accumulated damage to them (and their effectiveness in their jobs) of a succession of stories with hard endings: if they connect too much, well, they're going to feel bad without really doing their (very specific) job any better. It's a TRIAGE: the energy they'd have to put into useful empathising with nerve-wracked or grief-stricken feelings of patients and relatives is (actually) a distraction from what they're being hired to do: if they expend too much there, they're cutting back on their "proper" role.
(And yes some are fine with all dimensions of the job; what I'm getting at that that Surgeon X may indeed be a transcendent genius in theatre, where you do actually want him to be... and still a pr!ck on the ward, where you sort of have to glower and lump it.)
(Surgeons enjoy and are committed to cutting holes in live people: no wonder some of em are a bit empathy-estranged.... Personally I am very pro the black humour and secret in-joke codes dimension of hospital life; it's so evidently a needed stress-coping mechanism, plus it appeals to my kind of humour, which presumably evolved for similar reasons, given our family situation.)
Upshot: If the best way forward IS a treatment that patients and relatives are frightened of, it's still the expert's job to say what the best way forward is -- and some of them step away from caring about giving space for patients and relatives to get up to emotional speed, because actually it's not something they think can be afforded (in procedural terms, but also in terms of themselves as the Finely Honed Technological Instrument of Saviour). If bodies get mended, feelings will catch up (is how they're thinking).
So yes, bullies ahoy, sometimes. Sadly. And you sort of just have to weather this; ignore it, and not be afraid to ask. Don't let yourself be patronised -- the patient is what matters, not their sense of self-esteem; but also not yours.
(The flip of this, by the way, the opposite of consultant-type arrogance, is doctors or nurses not quite telling you what they feel you evidently aren't ready to hear. PLAINLY arrogance is the better option. Your feelings are important but knowing the facts is more so. This arises as a little parenthesis probably because the various sources of this advice tend to the stoical end of the spectrum, so we don't encounter this issue so much. Mileage almost certainly varies.)
SLIGHTLY EDITED COMMENT ON EXTENDED FOOTNOTE FROM MY FRIEND IN THE PROFESSION:
"Remember that the carer of the patient is not impartial to things as they are so close to the situation, especially if they are the child of the patient, and will always find fault, even when doctors are doing well; research has shown that relatives are hugely upset when people die in hospital because they believe when they go in they are going to come out, but that really is not always the case. OVERALL hospital workers do try desperately to do the best they can (and I wish some complainers would do the job of nurses and doctors for a week, they wouldn't last a day!) It is very easy to criticise when you don't have to make the decision to operate etc. HOWEVER there ARE some shit staff that are no good. Consultants have awful bedside manners, but they have to keep their distance as if they did have compassion, they couldn't do their job because emotions would play to much of an important part in them, which in turn would mean they couldn't carry out what they needed to do. As you have said, they are working on human beings who are alive, carving them up etc – which essentially makes them have a weird job, but one that we need in life.The key to everything is to get to know EVERYONE who is involved in the care of your loved one. Ask the staff to make a note on file of the important people who will be visiting and calling to find out how their loved one is" [ie to circumvent all the "can't give you info, etc" type stuff]
This arose out of emails with
catsgomiaow: it occurred to me -- and she agreed -- that some kind of advice digest of our various experiences might be helpful to others. What follows builds in the notes Dr Vick wrote for Becky and me when my mother started to become seriously ill about five years ago, combining our experience of what was helpful and what was a surprise to discover in this very stressful situation -- to start to put together a kind of database-discussion of what to expect, to plan for, to know to demand, especially in regard to things that you may not have been prepared for. As my friend (who works in a hospital, currently in the "interfacing with the public" side, which she is very good at) put it: "It is about looking after the patient, keeping the carer [ie YOU] informed, and being realistic in what is and isn't achieveable in one's care."GOALS:
The most complicated thing to getting a balance right between too little information and too much -- partly because everyone is different; partly because just as an ordinary person, you aren't always trained to use the information you're getting. What helped Becky and me about the list Dr Vick wrote us back when mum's hospital visits started to be regular and often was that it was just very blunt and direct; it really helped us not be nervous -- and get bold quick -- about asking questions (of course we were always polite and reasonable; realising your job is the firm advocacy of the rights and requirements of someone in your charge can help you be firm without being strident).
ISN'T IT TOO LONG?:
As my friend who works in the profession said: "Essentially it is really really good but far too long. Remember, if someone is grief stricken, trying to be strong for the patient, and also trying to be the clear-headed one, to try and take in all this information will leave them mad. Condense it more. ..." Well, I'm putting it up as much as anything for people to read that AREN'T currently so much having to deal with this kind of thing -- if they can absorb some of it now, under a lot less pressure, then they are better armed to face these things when they do have to face them...
RESPONSES :
Comments welcome! Especially if your experience differs!
A: readdressing the balance (information, decisions, power):
1: ALWAYS MAKE NOTES
Ideally carry a clipboard or ringbinder, and write stuff down in it (even if yr secretly only drawing sad moomins). Partly because this slightly unsettles the bad sort of consultant or doctor, to your advantage -- partly because you can crosscheck things at different times, and think about them later, in the times when WAITING hangs heavy. ALSO: write down the names of all the doctors that you deal with, the sister in charge of the ward, and the nursing staff). this will be invaluable if you need to readdress issues and helps the Trust to pinpoint people quicker.)
2: KNOW YOUR ONIONS
Get to know the medical names for conditions, know the names of medication and procedure. Look up side-effects of medication on the net -- easy to get spooked here but honestly fore-warned is fore-armed. (However, be aware that not all people suffer the same side-effects, if any -- or indeed respond the same way to the same side-effects; so err on the side of caution on making your assumptions; and look down at Quality of Life, below, for ramifications of changes, wanted or unwanted....
3: PAPER TRAIL
Print out stuff from net and mark up with highlighters. Bring this with you. Write lists of queries and check them off as they're answered.
4: YOUR RIGHT TO BE INFORMED
Never be afraid to ask questions; don't be fobbed off. Get second opinions. Re-ask questions after time has passed; especially when situation changes. When things go unexpectedly -- particularly FOR THE BETTER -- don't be so relieved you forget toc heck why the bad prognosis turned out wrong after all!
5: EVEN CONSULTANTS ARE HUMAN (sorta kinda)
They have knowledge and experience you don't; so don't reject this JUST bcz they're being a d!ck. Listen seriously etc. But don't assume they're omniscient, even if they would certainly prefer you to. [EXTENDED FOOTNOTE BELOW]
6: SMALL BUT USEFUL FACT
Consultants are DOCTOR BROWN but surgeons are MISTER BROWN. They expect the Ordinaries to get this wrong, which makes it worth getting right; it turns you into a bit of an insider, and gets you slightly more respectful -- honest and insider-y -- conversations.
7: THE BALANCE
Essentially patients and relatives are called on to make decisions about
i. who makes the choices, and
ii. how much control you want, and how much you want to cede.
Obviously you DON'T want the responsibility of all of it, you have to trust and delegate (ie don't second-guess the anaesthetist!) but equally you don't want simply to put yourself in the hands of others without knowing where you're heading. And you WILL have to push a bit to find the place you're comfy in -- which can really go against the grain of yr personality, but can also pay off, because you find at the crunch that you're good at taking charge, and setting the agenda.
8: YOUR ROLE/RESPONSIBILITIES
Actually of course there's a similar balance to be found between patient and relatives, and among the relatives. Becky and I are really blessed, that we can carve up responsibilities very easily, and totally trust each other: other families are not necessarily so lucky.
9: PARENTS AS PATIENTS:
The dynamic of yr relationship will be changing somewhat -- you are becoming the parent of a parent in way, having sometimes to make decisions across your mum's or dad's; obviously this something most of us go through eventually, but if the parent is not that old or you don't have kids already -- or other vulnerable people you've had to be responsible for -- it can be a particularly complicated journey, with everyone used to the old roles and at least sometimes stubbornly wanting them back. DON'T be surprised at the range of emotional stages the patient will go certainly through – depression, anger, frustration, fear, shame, sense of humiliation and failure, guilt, refusal of dependency, making your burden harder in misguided attempts to make it easier... Our mum was very locked into her sense of duty towards dad, and to be honest was only persuaded to give up on this stage by stage as medical emergencies made it impossible: mileage will vary (mum was an only child with astonishing resources for taking the world on alone). (She also had a VERY complicated attitude to doctors; she always insisted to thought them very ridiculous and pompous, but then invariably got on really well with the exactly the doctors and consultants becky and i thought were the worst!)
10: SHARING
Talk about things to the patient's relatives (especially siblings) and close friends. They will have perspectives you don't have; uncertainty is honestly more of a burden than shared anxiety.
B: Exploring the alternatives : <--- this is important)
1: ALL THE CHOICES
Ask about the RANGE of possible treatments; make sure you're making a note of all of them and think about all of them seriously. Don't let yourself be crowded here -- the doctors don't have to live with consequences; you do.
2: PERSPECTIVES
Ask what to do to get a second opinion. DON'T be fobbed off. It's your right and it's a good way to get perspective. Find out which other hospitals specialise in this condition.
3: PROFILING
Check out a hospital's profile on various elements (hygiene, efficiency, MRSA): there's league tables available on the net.
4: QUALITY OF LIFE
QoL is -- as much as anything -- a matter of the sometimes slightly grim details we don't much want to talk or think about (this is partly a cultural and an English thing, Dutch Vick points out... ). How do we look; how do we feel physically; how do we feel mentally and emotionally; what will our routines become; what will the costs be (in time, in money, in loss of privacy, in whatever) and are they bearable...
5: OUTCOMES
For any given treatment, ask, if we go ahead, what can we expect in the following areas (and ditto if we decide against)?
i: side-effects (pain, dizziness, balance, flushes, hair-loss, weight-gain, sensory effects, mental confusion, mood change, mood swing, sex life, diarrhoea esp.if constant, bad breath... )
ii: regimes of medication -- is the mix of medications known territory; is it patient-manageable (or should the patient have oversight)?
iii: what aftercare is needed; what is available?
iv. recovery chances -- if we say yes and IF WE SAY NO
6: OTHER ADVICE
Talk to health visitors, social workers, psychologist -- they will know about things that GPs and hospitals may well NOT know.
EXTENDED FOOTNOTE: EVEN CONSULTANTS ARE HUMAN
That overbearing bullying mask is often just that, a mask. What medical professionals are protecting themselves from is a real potential harm, the accumulated damage to them (and their effectiveness in their jobs) of a succession of stories with hard endings: if they connect too much, well, they're going to feel bad without really doing their (very specific) job any better. It's a TRIAGE: the energy they'd have to put into useful empathising with nerve-wracked or grief-stricken feelings of patients and relatives is (actually) a distraction from what they're being hired to do: if they expend too much there, they're cutting back on their "proper" role.
(And yes some are fine with all dimensions of the job; what I'm getting at that that Surgeon X may indeed be a transcendent genius in theatre, where you do actually want him to be... and still a pr!ck on the ward, where you sort of have to glower and lump it.)
(Surgeons enjoy and are committed to cutting holes in live people: no wonder some of em are a bit empathy-estranged.... Personally I am very pro the black humour and secret in-joke codes dimension of hospital life; it's so evidently a needed stress-coping mechanism, plus it appeals to my kind of humour, which presumably evolved for similar reasons, given our family situation.)
Upshot: If the best way forward IS a treatment that patients and relatives are frightened of, it's still the expert's job to say what the best way forward is -- and some of them step away from caring about giving space for patients and relatives to get up to emotional speed, because actually it's not something they think can be afforded (in procedural terms, but also in terms of themselves as the Finely Honed Technological Instrument of Saviour). If bodies get mended, feelings will catch up (is how they're thinking).
So yes, bullies ahoy, sometimes. Sadly. And you sort of just have to weather this; ignore it, and not be afraid to ask. Don't let yourself be patronised -- the patient is what matters, not their sense of self-esteem; but also not yours.
(The flip of this, by the way, the opposite of consultant-type arrogance, is doctors or nurses not quite telling you what they feel you evidently aren't ready to hear. PLAINLY arrogance is the better option. Your feelings are important but knowing the facts is more so. This arises as a little parenthesis probably because the various sources of this advice tend to the stoical end of the spectrum, so we don't encounter this issue so much. Mileage almost certainly varies.)
SLIGHTLY EDITED COMMENT ON EXTENDED FOOTNOTE FROM MY FRIEND IN THE PROFESSION:
"Remember that the carer of the patient is not impartial to things as they are so close to the situation, especially if they are the child of the patient, and will always find fault, even when doctors are doing well; research has shown that relatives are hugely upset when people die in hospital because they believe when they go in they are going to come out, but that really is not always the case. OVERALL hospital workers do try desperately to do the best they can (and I wish some complainers would do the job of nurses and doctors for a week, they wouldn't last a day!) It is very easy to criticise when you don't have to make the decision to operate etc. HOWEVER there ARE some shit staff that are no good. Consultants have awful bedside manners, but they have to keep their distance as if they did have compassion, they couldn't do their job because emotions would play to much of an important part in them, which in turn would mean they couldn't carry out what they needed to do. As you have said, they are working on human beings who are alive, carving them up etc – which essentially makes them have a weird job, but one that we need in life.The key to everything is to get to know EVERYONE who is involved in the care of your loved one. Ask the staff to make a note on file of the important people who will be visiting and calling to find out how their loved one is" [ie to circumvent all the "can't give you info, etc" type stuff]
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plus:
Date: 2008-01-07 11:07 am (UTC)no subject
Date: 2008-01-07 11:13 am (UTC)no subject
Date: 2008-01-08 03:05 am (UTC)