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The rights of patients.

(98 Posts)
Falconbird Mon 05-Jan-15 15:20:36

This question has already been discussed in connection with people with dementia but the same thing happened when my DH was given a terminal diagnosis. He was somewhat confused because cancer had spread to his brain but he was quite coherent and with it.

The doctors said that he had to be told that he only had weeks left. I literally begged them not to but they mumbled on about it being the law that people are told the truth. When they told him his poor head was covered with sweat.

We had been married for over 40 years and I knew him better than anyone but my wishes were completely ignored. I remember swearing and making a scene at some point (in a corridor or somewhere) but I felt so helpless that I wasn't allowed to make the decision for him.

I still feel so angry about it more than two years later. Fortunately (in some ways) the cancer took its toll and he couldn't remember that his time was coming to an end and he was relatively calm, thinking he was going to have chemo etc.,

loopylou Mon 05-Jan-15 15:25:31

That is appalling and unforgivable. I am pretty certain no such law exists, it is different if the patient wishes to know, or if you had asked for the timescale to be broached with him.
So traumatic for you both sad and unnecessary.

granjura Mon 05-Jan-15 15:30:02

I am so sorry you had to go through this. The way I understand it, is that if the patient asks, something like 'how long have I got?' or 'do I have cancer- what is it' - then the doctor has to give a straight and honest answer, best they can. Say something like 'well, it's impossible to tell, but perhaps 6 months, but perhaps less'- or 'yes, it is cancer' and if asked give straight answers to questions. I've never heard that it is necessary for doctors to volunteer this information- at all. Now, could it be that your husband did ask- maybe when you were not present?

I know doctors who have been threatened by family members, one even threatened with death- and one beaten up in the surgery- because the patient asked, and teh doctor did give them an honest answer, as they should, against relatives' wishes.

KatyK Mon 05-Jan-15 15:35:18

So sorry to hear this. I agree with loopylou. When my nephew was diagnosed with leukemia (aged 14) he asked the doctors if he was going to die. The answer was 'it's a possibility'. We were a bit shocked as we assumed they would have asked his parents what the answer should be should he ask. They said they always gave an honest answer. He did die unfortunately two years later sad

KatyK Mon 05-Jan-15 15:36:05

my post crossed with yours granjura.

Liz46 Mon 05-Jan-15 15:37:45

Falconbird, I'm so sorry this is still hurting you. I'm not surprised as I think you knew your husband better than anyone else and knew what was best for him. Unless he asked a direct question of the doctors, they should have listened to you.

It was so much kinder in some ways when the doctors did what was best for us without giving us too many details.

My husband accompanied his mother when she had to go, with others, to have details of her pending triple bypass explained. He was horrified at the detail given and said it was cruel.

Falconbird Mon 05-Jan-15 15:44:31

Thanks Grans. Yes I suppose it was possible that DH did ask how long he had left but I can't imagine that he did knowing him so well and seeing the sweat on his poor old head.

I wish I had the courage to ask someone about this e.g. my GP but I just can't talk about it. So glad I found Gransnet where I can "let it all out."

If anyone does know the law on this matter I would be very grateful.

My sons were present for a lot of the time when my DH was ill and they said that I had misremembered a lot of the proceeding and that could be true. I was in such a state using the "f" word a lot. But I definitely remember the docs gathering us all together in a room and telling my DH.

Unfortunately I can't bear to discuss this with my sons because I think I handled it all really badly.

granjura Mon 05-Jan-15 16:26:38

Again I am so sorry. Unless the patient asks- then there is no requirement to volunteer information- so if he did not ask- and you asked them not to- it seems they were totally wrong to do so. Imposible to state categorically on a Forum like this, without knowing all the detail though.

If a patient asks- even if relatives don't want the answer to be given, it is the doctor's duty to consider her/his patient's needs, and request for info, first. The patient is the directo doctor's responsibility, NOT the relative, even a wife of long standing. But if the patient does NOT ask- then in such circumstances, I agree that it was wrong and perhaps, cruel.

Hope you can let this go now- as harbouring this can't be of any help for you to move forwards. ((((( hugs )))))

loopylou Mon 05-Jan-15 16:28:03

I'm sure your sons would rather you discussed it than keep having it churning around in your head, and as no one knows how they would 'handle it' until it happens I really wouldn't beat yourself up because you think you handled it badly Falconbird.
In such situations we all react differently and possibly interpret things differently but nevertheless we do the best we can to make sense of a dreadful situation. There is no right or wrong way.
For all you know they may be thinking they handled it badly too......
((Hugs)) and flowers and be kind to yourself x

Mishap Mon 05-Jan-15 16:37:03

Falconbird - there is no way at all anyone could handle this well (however that might be), so do not beat yourself up. You did all you could and were contradicted by the doctors - that is their fault, not yours.

You were right to be angry and to swear - I know I would have done.

Your DH heard and then rapidly lost the information and for that I am sure you were all thankful.

He is at peace now and had his family around him doing their absolute best for him - I am sure he knew that.

Thank you for flagging this up - I know it will have been hard, but you have done a service to others who could very well find themselves in a similar situation and will be prepared.

ginny Mon 05-Jan-15 17:14:28

My Dad died nearly 4 years ago. He had been ill for around 6 months and was obviously becoming weaker and weaker. However he was fully with it and kept as cheerfull as he could . I and the rest of the family knew that there was nothing medics could do for him and I suspect he did too. However he would talk about what he would do when he was better and we considered that if this was the way he wanted to play it we would do the same. Our own GP was wonderful, he kept us fully informed and was kind and considerate to our feelings on this.

One afternoon I had to call our surgery as Dad was particularly uncomfortable ( I was his main carer ). A woman doctor from the same practise arrived and without any discussion told him that it was probably time he was moved to the local hospice as he was very ill and they could make his last days more comfortable. At the time I was so amazed at what she was saying I just told her that dad wanted to be at home and I was happy to have him there and care for him.

Dad died that evening. I realise that he could have died at any time but deep down I feel even now that she shattered all hope that he had and made him feel that he was a burden on us.

Falconbird I understand how you feel.

Crafting Mon 05-Jan-15 17:30:53

Falconbird I am sure things have changed over the years. When my MIL had terminal cancer and only weeks to live (which we didn't know till after the event) we had a real job getting the doctors to tell us her prognosis let alone her, with the result that none of us were with her when she died.

I think one possible reason for telling patients the truth if they ask is so that people have the chance to set their affairs in order e.g making a will, making up with estranged family, visiting somewhere they always wanted to go etc.

Having said all that, I can completely understand where you are coming from and I too would wish to spare my loved ones the worry and pain. From this thread and others you have posted on recently, it is obvious that you loved your DH very much. I am sorry for your loss flowers

durhamjen Mon 05-Jan-15 17:57:44

Three years ago, my husband died of brain cancer. It had been diagnosed at the end of September 2011, and he died 22nd January 2012, after three weeks of not being able to get out of bed. He was at home and cared for by hospice at home. He had filled in an advance directive, and we all knew that he wanted to know everything. Whether he remembered it all or not, we do not know, but he was fully involved. In fact, he decided that he wanted no more to eat or drink three days before he died.
There was a GP and a MacMillan nurse, both of whom knew his wishes, as did all the family, because he had made sure we all knew.
It's a shame, Falconbird, that you and your family did not discuss what was going to happen, as now you might be able to talk to your sons about it.
I still have times when I wonder if we did the right thing, by allowing him to stop eating and drinking. But it is what he wanted.

My husband also had cerebellar ataxia. He had a neurosurgeon looking after him for two years after we moved to Durham, and we wrote to her, and discussed with her what had happened, and whether they had missed the brain tumour earlier when they were taking brain scans because of the ataxia. After he died, they checked all the scans very thoroughly, and they showed us them. We are certain that whatever was done was done to help him. Are you sure it's not possible to talk to anyone medical about him?

This is the sort of thing that should be put in an advance directive and given to your GPs just to make sure that those left behind are not unduly upset by what happens.

Falconbird Mon 05-Jan-15 18:13:22

Thanks everyone. From what you say things do seem to vary from doctor to doctor etc., I will pluck up courage to ask my GP one of these days and I have told my grown up kids that I don't want to know. That may change over the years.

Sorry about your dad Ginny as I said I think it does vary with doctors. I didn't know about the advance directive, it sounds like a sensible idea. You certainly have been through it Durhamjen. My DH died July 2012. He had an emergency blood test which came back as normal but when I got him to the hospital it was a different story and he passed away 10 days later.

It is a confusing state of affairs because with my mum who passed away aged 90 the medical staff were giving me different messages. One nurse was talking about putting in a feeding tube while another kept listening to her heart and shaking her head and looking at me.

Thank you for the flowers Crafting.

absent Mon 05-Jan-15 18:38:33

Perhaps it does not apply here but there is the issue of informed consent. A patient cannot properly agree to any sort of treatment if he/she does not know the facts and the prognosis.

Faye Mon 05-Jan-15 21:18:41

Falconbird I feel the same three years later. My mother was told she was going to die by the Oncologist. She was on her own as DSis and DM had been waiting for ages in the waiting room and DS quickly went out for five minutes to get my mother a drink. Then he organised DM to have radiation but not chemo. DM had been staying at another hospital for a few days so the same doctor had her transferred back to his office to discuss again whether she should have chemo. My frail, ill mother didn't want to be told that she had no hope and was very depressed about it, she told me she felt very sad.

I will say in the last month or so she started looking well, probably was starting to get over the radiation treatment, even though the cancer had by then spread to her brain. DM came to terms with the fact that she was dying. She did seem to be very calm and even happy, but I would say a lot of that was related to the care she received at home where she died five months after being diagnosed.

I think most of the treatment my mother had was appalling, from other doctors too. One time my mother questioned why she even had a doctor's appointment at another hospital which I took her to. The doctor just skimmed through her notes, she had been referred by her local GP. It appeared to be a money earner for some of these doctors.

etheltbags1 Mon 05-Jan-15 21:45:57

This has so scared me now, reading all these stories.
I have never asked the doc what my prognosis is, if my cancer is terminal and no-one has told me, I feel ok at the minute and the doc has said it has not spread other than my lymph nodes but was she just being kind, Im now thinking that maybe it was much worse and has spread. Im thinking all sorts of stuff now.
I thought they had to tell the patient the truth by law regardless of the situation.
I was just coming to terms with having cancer and was reading lots of stuff about people who were in remission or cured and was feeling better but now I feel just as terrified as I was on the first day I was told.
I don't want to be like this, please give me some reassurance somebody -please I wont sleep tonight.

soontobe Mon 05-Jan-15 22:02:17

I will bump this for you etheltbags1.
I dont know the answer myself.

janeainsworth Mon 05-Jan-15 22:14:13

Ethel I think that nowadays, doctors do tell patients the truth, not least because they can be sued if they don't.
Of course, they don't always know 'the truth' themselves. They can interpret scans and Xrays, and tell you what the state of play is at a point in time, but they can only give an opinion on what might be happening in 3, 6, or 12 months' time. I have read of one case where a patient was told that his prognosis was very poor, he sold his painting and decorating business, disposed of most of his assets and then went into remission and was alive several years later. Then he sued his doctors for loss of earnings etc.

It comes down to trust. You must trust your doctor, and ask her, to tell you not the truth, but her best professional opinion.
I am sure that if she has told you that the spread is confined to your lymph nodes, then that is the truth.
If you want to know more, then you are asking her opinion, and you will have to ask her, and trust her, to be honest with you.

Tegan Mon 05-Jan-15 22:21:03

I thought the lymph nodes were the 'vacuum cleaners' of the body so you should think of them as working to help you get better ethel. And the fact that it hasn't spread beyond them means that they're doing their job very well. Be positive.

etheltbags1 Mon 05-Jan-15 22:23:38

Do the doctors not try to spare you the worry of knowing the truth.
I am really scared and sit trembling in the docs office, they know Im terrified and maybe they are trying to be nice. I am coming to terms with it and I know theres nothing I can do about it I have to trust them but maybe they are being tactful. I have an apt this week and am seeing a different doc, for more results. I wont sleep till then.

etheltbags1 Mon 05-Jan-15 22:26:02

thinking of changing my name again, maybe to 'scaredy cat' or something like that.

Ana Mon 05-Jan-15 22:39:17

I don't think doctors/consultants try to spare you the worry of knowing the truth, ethel - as evidenced by some of the stories on this thread!

In my experience they will tell you what you need to know at the time, the extent of the disease and what treatment they believe will be effective. I think you would have to specifically ask for a prognosis.

Mishap Mon 05-Jan-15 22:40:11

It is inevitable ethel that your anxiety will wax and wane - you have been doing so well - I can tell that from all your interesting posts. But now and again some small thing will trigger off your worries again.

I am sure that what the doctor has told you is the truth - they are not allowed to lie. I am also sure that, as she could see you were understandably nervous, she put it in a tactful way - but it is still the truth.

It is a worrying time for you I know, but we are all behind you, and so many people on Gransnet have personal experience to draw on to help you.

You are not a "scaredy cat" - we would all be the same in this situation.

I will be thinking of you.

Falconbird Tue 06-Jan-15 07:57:23

Hope all goes well ethelbags1

You're definitely not a scaredy cat but a strong brave lady.

Doctors can't be kind because their reputation would be at stake. I had my abdomen palpated a few weeks ago and the doc said everything felt and sounded fine, but then I got into a state thinking she was being kind. A friend told me "it doesn't work like that" and of course she was right.