Are they being unreasonable

I think the issue about relatives and informing them in such a situation is quite fraught. I would never want absentdaughter to be put in the position of deciding about my fate. Any decision should be mine and mine alone – apart from the fact that physicians and surgeons have the final say about discontinuing treatment and DNR, I think. I think it should also be my decision about what and when absentdaughter would be told and the telling should be mine to begin with even if she then wishes to talk and listen to the consultant concerned.

I think it is deeply patronising to "protect" someone who is dying from full information about their condition and any suggested treatment or care.

Obviously, in the case of dementia or other conditions that prevent the patient from understanding – or even hearing – what they are being told, the situation is rather different.

Looking at some of the accounts of dying relatives here, it seems that some doctors have still not acquired what used to be called a "bedside manner" – especially important with very seriously ill or dying patients. Is it because they feel that they are failing as doctors because they cannot stop someone from dying or is it more dismissive than that?

So hard to get end-of-life care right.
Both placebo and nocebo often wildly over-hyped by the "positive thinking cures everything" brigade. But the down side of doctors having to be negative about drugs (you may get side effects...) is that they may cause nocebo - negative suggestions , rather than placebo "these will make you feel better" .
The other down side of all this "communicate with the patients" practice is that relatives may be left out of the loop. Certainly found this when MIL has pancreatitis. Not a lot of point communicating with a really poorly deaf in one ear patient and expecting her to understand and relay ones comments to relatives is there.

Thanks for your comments earlier, gknot. I had to go out just after I posted before so I'm just catching up on this thread.

Sorry to hear about your mother Cressida. I believe your mother's consultant had your mother's best interest at heart.

Faye, my mother was treated very differently earlier this year. She probably had colon cancer but the only investigation she had was a CT scan. They found a large lump which the consultant felt would eventually block her colon. No further investigations were done because he felt that operating wasn't an option due to her general health and dementia. He told Mum that she had the lump and that he didn't advise surgery but he would do it if she really wanted it. I wasn't with her when she saw the consultant as the appointment was arranged at very short notice so the care home arranged for one of the carers to go with her. Mum understood everything he told her because she told me herself when I saw her the following day.

One of my brothers felt that they should have done more investigations and that they'd have to operate at some stage.

Mum died 6 weeks ago in hospital a week after an operation to repair a broken hip after a fall at the care home. The operation itself was a success but Mum's body just gave up. She didn't eat or drink so they had her on fluids. The day before she died a lovely female doctor talked to me & my daughter about DNR. About an hour later she came back with the consultant who explained about palliative care and asked if that was what we wanted for Mum.

The earlier consultant's decision not to operate was the right one for Mum as I think we would have lost her if he'd operated. As it was we had her for 8 months longer.

The thing too was my mother ended up living with my sister for the last five months until she died. My sister is a vicar. She believes people need to be told, but not brutally of course. She often talked about Mum dying to her. In the end Mum started to feel a lot better. My sister took her to the hairdresser every week and she drove her to lots of places and people were always popping in. In the last month before she died my mother who was never a glass half full type of person was super cheerful. If you made her a cup of tea she would say it was marvellous. Everything she ate was wonderful. She bought all her great grandchildren a Christmas decoration so they would remember her each Christmas. My sister didn't think the drugs she was on would make her so overly happy. By the end she had sorted out and come to terms with a lot of things. So maybe knowing was a good thing, or maybe knowing but not having been told would have been kinder but maybe she wouldn't have come to terms with her impending passing.

My SIL's sister works in a nursing home as a RN. One of her jobs is to visit the residents with a form. On the form it asks in the case of resuscitating what would the resident want done. She is not suggesting the resident is going to need in the future to be resuscitated just if it happens the nursing home have it on record.

Galen it does, and I do enjoy my job

This is still very raw for you Faye .. I was very angry too at the undignified death my Mother suffered. In time I let that memory and anger go and now remember much happier memories.

Faye I'm so sorry for you, my mother similarly, bluntly, had that news from a consultant, she then asked if she could phone me and she was handed the phone (by whoever in the hospital who made the call) to tell me. I spoke to her calmly, replaced the receiver (no mobile phones back then) and then collapsed on the floor as if I had been punched in the solar plexus.

The only thing that consoles me is that not long after she went into complete remission for 18 whole months, so two fingers up to those who had told her she would be dead within 6 months. She was well for 16 of those months before the cancer made its presence known again.

I have posted about this before. When my mother was diagnosed with cancer in 2011 the specialist called her into his office and told her straight out that she had cancer and was dying. My sister who had been waiting with her for the results of the tests had only just popped out to get them something to drink. They had been waiting for quite some time. The nurses tried to contact my sister so she could rush back and be with Mum when she was told. Then a few days later these people organised an ambulance and took my mother (unbeknown to us) back to the hospital for more unnecessary tests to see if she should have chemotherapy besides radiation. They had previously decided that the radiation was enough. A technician on that day decided he would also tell my mother that she was dying.

Yes I am still angry at those people. It was very obvious that my mother was getting to the end of her life before being diagnosed. She had in the few years previously put all her things in order. So then she had the radiation, most unnecessary and made her feel very unwell for three of the last four months of her life. She said she was also feeling very down, no doubt feeling so ill and worrying about dying from cancer. It was in fact the one thing my mother had often mentioned in her life, she didn't want to die of cancer. People are not stupid, if you are old and sick good chance you are going to die. Some people like to have some hope and not have that taken away.

It rubs off doesn't it?

Galen no, I am not a medic, but I do work with GPwSI (for those with substance use disorder, I think is the current PC term) so I am often in seminars or lectures where most of the people in the audience are medics.

How things have changed in the treatment of the dying. When my father was dying 30 years ago my mum, my husband and I were taken into a room by the consultant and given the news that his cancer was terminal. The doctor said my father hadn't been told and would only be told if he asked. My mother did not want him to know and we maintained a hopeless charade until he died 3 months later. To this day I have no idea what my father thought or how he felt.

When my mother was dying 15 years ago I was taken into a room and asked whether I agreed that she should not be resuscitated. My mother was not asked although she was perfectly competent to make such a decision. I was so upset that I agreed with the doctor but I had no right - legal or moral - to make such a decision. It was only afterwards that I felt angry about being placed in this position. I still feel that the only reason I was asked was to guard against any complaint or even legal action by myself after my mother's death. I would not want any of my children to be placed in that position, and I feel it is so much better that the individual is now involved in decisions about their own death. Whether that should be done in the presence of relatives is another matter, and probably different for everyone.

Kiora I think it's a Finley balanced judgement whether to include the patient or not. I always felt it was better to ask the relatives about whether the patient would wish to be asked.
A rather tangled sentence I'm afraid, but I think you'll get what I mean.

I have sat with dying patients waiting for the arrival of relatives and witnessed many different reactions. Some people were stoic, some people fell apart. We are all different and no one can say how they would react in the reality of being given news that is a shock.

My father died 21 yrs ago.He had been told he had terminal cancer. When my Mother and I arrived at the hospital, my Father had come to terms with the news. I was very stoical and matter of fact about it but this was possibly because my Mother couldn't accept it. When my Mother died 12 yrs ago, I was no use to anyone.

Thanks Gk I must have missed that article.
Are you a medic as well? If so, nice to have second opinions around!

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

en.wikipedia.org/wiki/

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

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.

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:

pmj.bmj.com/content/85/1007/503.full

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).

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.

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

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 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.

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.