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Are they being unreasonable

(42 Posts)
Kiora Fri 25-Oct-13 15:52:22

One of my dearest relatives was taken into hospital. He has a chronic condition and when his wife and I visited him the consultant came into his room and gently told us that they would not resuscitate him or make any attempt to prolong his life. He said we must realise that his condition was in its final stages and he was at the end of his life. His wife knew and I suppose I knew I just didn't want to hear it. He assured us that he had spoken to my lovely sick relative who had told him to wait until we came to discuss it with us. But what shocked me is that they talk about this in front of him. Is this normal practice? is it reasonable? After I had pulled myself together and come home I promptly told my husband that if I was in this position he must tell the doctor to keep it from me I just would not want to know (a coward I know but I don't care) be gentle with your replies I'm feeling very low and unsettled!

Mishap Fri 25-Oct-13 15:56:18

It does seem to be standard practice now. My elderly Dad was asked if he wanted to be resuscitated in the event of his heart stopping - he told them that yes he jolly well did! This was about 9 months ago.

He has subsequently died, but not in hospital.

thatbags Fri 25-Oct-13 16:10:10

If the consultant had already spoken to the patient, I don't see the problem about repeating the same to the patient's relatives in the patient's presence. So long as it is done sensitively, I think it's the right thing to do and not at all unreasonable.

Elegran Fri 25-Oct-13 16:22:33

Many people do not want the pain and indignity of resuscitation, when it is only to bring them back to more of what they had just escaped.

Resuscitation is not the simple turning back on of a switch to return the patient magically to life and health. It involves heavy physical and electric manipulation of a body which itself has decided that it is time to call a halt. Among other things, ribs can be broken in the process, leading to pain in breathing.

Lilygran Fri 25-Oct-13 16:24:03

I think it depends on what you (the patient) wants, doesn't it? They seem to have gone from not telling the patient, and sometimes the relatives, anything so as not to upset them, to absolutely full and frank disclosure. One size doesn't fit all. I think I prefer the full and frank but I'm not sure. And how do you approach it? Do you want to be told everything ? is a bit of a giveaway.

Galen Fri 25-Oct-13 16:35:05

I'm NTBR! Not to be resuscitated

annodomini Fri 25-Oct-13 16:48:56

I was thinking of getting that tattooed over my heart, Galen.

tanith Fri 25-Oct-13 16:49:38

I intend on asking for DNR to be put on my notes when/if I can when I think the time has come.. the only problem is my OH has a different view and I know doctors will take into account the next of kins wishes too.

I think Doctors can generally when they open up this conversation gauge whether the patient is open to a frank discussion or not.

Eloethan Fri 25-Oct-13 17:23:38

I'm a bit confused because I thought kiora said that the gentleman told the doctor he would discuss the matter with his relatives - did that mean he was unsure whether to accept the DNR advice?

I thought, as long as a patient was in a fit state of mind to make such a decision, they had to be consulted as to their wishes. If that's the case, then the doctor had a duty to discuss it.

If I was nearing the end of life and very poorly, I would not want any great efforts to be made to keep me alive - just to be kept as comfortable as possible. I wonder though whether a lot of people think like that in theory and when such a situation becomes a reality, they find that they want to cling on to life for as long as they can.

wisewoman Fri 25-Oct-13 17:42:26

I would want discussion with my relatives to take place in my presence. If I have made an informed decision then discussing it would not be a problem.

Kiora Fri 25-Oct-13 17:47:28

His own consultant in his hometown ( they were visiting me 250 miles from there) had this conversation with him. His wife said he was ok when he was with the consultant but became very depressed and withdrawn later. Eventually he burst out that he'd been told "there's nothing down for me I'm going to die" his wife then consoled him by saying that's not what they said they were just asking what you would like to do if things got worse. When he was taken ill here and our small local hospital thought the worst may happen they broached the subject with him again and because he just wanted to avoid the conversation he told the consultant to talk with us. I was upset for obvious reasons but mostly because both his wife and I knew he didn't want to hear. It's all so upsetting, emotional and complex. I don't blame the doctor who didn't know him or us. I just think that sometimes your better off not knowing. My little mantra to most things is " if your not prepared for an honest answer don't ask the question" but in this case didn't ask because we didn't want to know but got the answer anyway.

Kiora Fri 25-Oct-13 17:52:18

I just want to add I'm not criticising i'v just witnessed the NHS at its best

mrsmopp Fri 25-Oct-13 21:49:08

Isn't this what they call the Liverpool Pathway? Or is that something different?

Eloethan Fri 25-Oct-13 22:04:02

The Liverpool Pathway is different, and it is no longer being followed because there were fears it was being used inappropriately.

Charleygirl Fri 25-Oct-13 22:38:34

annodomini may I suggest that you have DNR tatooed on your forehead rather than your heart because you may be clothed or in your night attire when resuscitated!

I feel exactly the same and I would also want to know everything so that I could make an informed decision.

annodomini Fri 25-Oct-13 22:53:58

How do you know I don't wear a nightcap, Charley? grin

Grannyknot Sat 26-Oct-13 10:02:34

Kiora I'm with you, and I understand what you're mean about the complexity of the situation. Also, just because the patient says it's okay to discuss with the relatives, there is no need to do so in front of the patient, for the very reason that the relatives may feel uncomfortable.

I have personal experience of this, when my mother was dying (and she was reconciled to this), the consultant told my sister and I in a very cold and clinical way exactly what was going on with her (gave us an update), I was stunned by the brutal (to me) information I was receiving and very uncomfortable with the fact that my poor mother was within earshot. And my mother I think sensed my feelings, and reached over and slapped the consultant on the leg (albeit weakly) as if to tell him off.

Anyway, if I know death is imminent or days or hours away, I wouldn't want a ball-by-ball account of when to expect it.

thatbags Sat 26-Oct-13 10:16:35

Why? Or rather, why not? If one knows one is dying anyway, why is knowing the truth or being told the truth in plain language brutal?

Genuine question because to me telling the plain truth seems to show respect for the patient and the relatives whereas avoiding the issue seems to stem from a patronising attitude, a sort of paly acting of You know you are dying, I know you are dying, your relatives know you are dying but let's not really face this plain and completely unbrutal fact of life.

Grannyknot Sat 26-Oct-13 10:29:27

thatbags you are always so logical! I may eventually get to the 'death is an unbrutal fact of life' but I'm not there yet, despite understanding it intellectually.

So, in the scenario I recounted, everyone was being respected - but guess what, my feelings were the unknown, and I couldn't control them.

I don't think that avoiding the issue is necessarily patronising. I attended a seminar yesterday where most of the people in the audience were GPs, one of the presentations was about the power of placebo medicine, and many research studies that show that people get better on placebos. So is giving someone a placebo to make them feel better, patronising? Part of the discussion was about all the knowledge and information that patients get nowadays and how for some people, knowing what the side effects of medication are, they exhibit all of them.

thatbags Sat 26-Oct-13 10:40:27

I can understand someone wanting to control what they show of their feelings in the face of death for the purpose of preventing someone else feeling worse than they already do.

I also understand what you're saying, gknot, about 'feeling' all the side effects of a medicine if you know about them, and I accept that placebos can and do help alleviate symptoms.

I'm thinking right now of when my father was dying. I didn't feel any need to control my feelings because they were natural. The grief of his not being around any more came later, after the funeral if I remember correctly, and I still feel its poignancy now, twenty years on. I cannot remember ever wanting to 'control' my perfectly natural feelings about it all. I do remember trying to accept the feelings of grief and sadness as perfectly normal and trying to regard them as stages I simply had to go through.

Different from controlling behaviour, of course, which one should.

Sorry to ramble. I'm just thinking out loud.

thatbags Sat 26-Oct-13 10:41:54

A question for the medics: have placebos ever been shown to cure anything, as opposed to alleviating symptoms?

Grannyknot Sat 26-Oct-13 10:48:57

bags perhaps I shouldn't have used the word 'control', possibly a better way to express it would have been 'my feelings showed' (at that moment, in the hospital).

flowers for feeling the poignancy 20 years on.

This discussion has awakened a whole lot of stuff for me about my mother's death 19 years ago and it is good to be able to relive the process, although glad about not having to experience it as intensely.

We need an empathy emoticon.

Grannyknot Sat 26-Oct-13 10:52:06

bags is it not a case of whether or not the patient considers themselves to be "cured"?

Here's an article you may find interesting:

Agus Sat 26-Oct-13 10:58:06

Yes. Given to patients when suspected tension was causing a headache. The psychological effect of taking the placebo relaxed the patient and the tension headache stopped. The mind is a powerful thing.

Grannyknot Sat 26-Oct-13 11:03:00

Agus that's a good example. I also learned yesterday of the "nocebo" effect, which I hadn't come across before:

<*Kiora*, sorry for taking your thread off on a tangential meander ... we'll get back to where you are eventually> flowers for you too.