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How far do we go to respect relative's wishes?

  • Comments (5)

Recently, in practice, I was faced with a situation that truly tested me.

During my community placement I had seen patients with a wide variety of different conditions and social situations, but one in particular presented quite a dilemma for me.

I visited an older woman who had a number of medical problems - one of which being heart failure. The only problem being she wasn’t aware of her condition.

Apparently, the family did not want her to know and the team were “respecting their wishes”.

The whole dynamic left me a little shaken.

I had got on well with the patient and found her to be a really pleasant. She spoke of her fear of falling and how she thought she was getting better because she was managing to do occasional leg exercises.

I felt guilty at the knowledge I had and wondered how she would be treated for her heart failure without her knowledge.

As a student I have had lectures on hypothetical situations very similar to this.

We were told that our duty is first and foremost to the patient. Unless there was any compelling reason why telling the patient about their own condition would be detrimental then, by all means, the patient should always be well-informed.

How would you feel about this dilemma? Where does the line lie between respecting the patient’s and the relative’s wishes?

 

  • Comments (5)

Readers' comments (5)

  • Anonymous

    I'm a new HCA on a medical ward. I had the same situation where relatives did not want there mother to know she had been diagnosed with cancer. Again, as far as I'm aware the relatives wishes were respected. The thing is the patient was far from non-compus mentus and I felt had the right to know. It's her body after all. It is a difficult situation though, as in all honesty, what good can come from a 95 year old being told they have cancer?

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  • michael stone

    This is very complex ! Basically, the rule is that clinicians are only supposed to treat people with the patient's consent, after the patient has been informed of clinical prognoses.

    But, this becomes very confused during EoL care, by the question of whether telling the patient would 'cause needless distress'. Which is a fair question - but people are very unclear about related issues (for example, if an EoL patient is at home and too frail for future CPR to be successful, and a clinical DNACPR is in place, if you don't tell the patient on potential distress grounds, should you nevertheless tell any relatives who are living with the patient ?).

    But the treatment cannot be whatever would suit either a patient's relatives, or the patient's clinical team - in theory you should simply ask a mentally capable patient what they accept or refuse, and even for mentally incapable patients the objective of the Mental Capacity Act is to try and work out the same thing: what the patient would have told us, if the patient could somehow do that.

    End-of-Life care behaviour and understanding is improving, and the guidance being created now is considerably better than that written a few years ago, but this improvement is not true of every piece of guidance being written, and there are still some very obvious problems left to be 'cleaned up'.

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  • Anonymous

    I have, in the past, been in similar situations and adhered to the 'relatives wishes'. Now I inform them that I 'won't go out of my way' to tell their relative but if they ask I will give the information the patient is requesting.

    Michael - I'm a bit confused - easily done I know but your comment as follows:

    *for example, if an EoL patient is at home and too frail for future CPR to be successful, and a clinical DNACPR is in place, if you don't tell the patient on potential distress grounds, should you nevertheless tell any relatives who are living with the patient ?).*

    Who would make such a decision as above? Surely their must be consultation before a DNACPR is put in place?

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  • michael stone

    Anonymous | 6-Feb-2012 8:45 pm

    If you read the current version of the Joint CPR guidance, it informs clinicians that when CPR has not been previosuly discussed, and it has been decided that it woudl be pointless to offer CPR because the patient is so 'ill' it would not work, then considerations hould be given to 'whether telling the patient would unnecessarily distress him/her'.

    The ethics of this are quite tricky to fit with 'I have a right to a second opinion', and the logic seems beyond some clinicians: for example, last week the EMAS Chief Executive sent a lette out telling people that from now on DNACPR Forms are to stay with the patient. The EMAS CPR policy includes this 'you should consider whether to tell the patient' thing, but for patients who are at home, not telling the patient is pretty tricky if the DNACPR form stays with him ! I have pointed that out, to the CE.

    There is more on this in one of the discussion forums, as I posted it as a question some time ago.

    I would add to my earlier comment, that if a patient is already mentally incapable, you must be clear about what relatives are supposed to be inputting into decision-making. The question for the relatives, and one which clinicians usually cannot answer without asking 'those close to the patient', is this one:

    'If we could ask your dad, what would he say to us ?'

    In other words, it isn't what the relatives would like to happen - it is the fact that only people who can act as 'a proxy mind for an incapable patient' can tell yuo what the patient would have said, if you could somehow ask him.

    'Dying' seems to be sufficiently tricky, that so far the guidance still isn't 'quite there yet' !

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  • Adam Roxby

    Hello everyone

    As always I have the pleasure of responding to comments.

    Anonymous - Welcome to the site.
    I do sympathise with you as I can see times when informing patients might not always be the best choice. I think Michael puts this point better that I do.

    Michael - As I said, great point. When talking about anything to do with ethics a whole series of questions are thrown up.

    I have a question for all of you, do we think that there is a difference between patients who are EoL (end of life) and those who are still some way from that point?

    Thanks once again for all your comments, let's keep the discussion going.

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