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Why would you withhold info about diagnosis/prognosis?

(33 Posts)
PloptheBarnOwl Wed 02-Apr-14 00:12:38

My mum is moving house, and clearing out decades' worth of stuff. She's just given me my dad's diaries- my dad died several years ago, and the diaries date from long before he met my mum.

My dad was very close to his mother, and the diaries stop in mid-1972, the day after he was told of her terminal cancer. It is heartbreaking to read. The saddest part is that my dad was told that his mother had terminal cancer and had less than a year to live, but she was not told. He writes that he was told privately by her doctor, who instructed him not to tell her. He doesn't seem surprised by this. I've seen this in the plots of old films, but am shocked it happened to someone I love. HOW can people have thought this was acceptable, or the "kindest" thing to do? My dad's final diary entry starts "The duplicity is going to be very hard to maintain, but I must do it, and Mother must not know".

This seems to cruel, and unimaginable. It must have made things so much harder for my dad and his.mother if they couldn't grieve together.

Why did people do this? I can't get my head around it at all.

ohfourfoxache Wed 02-Apr-14 00:25:34

It still happens sad

If it is deemed not in the patient's best interest to know then it can be kept quiet with family told instead.

On the flip side, some patients actively choose not to know. Looking at studies on "having difficult conversations", if handled professionally and appropriately, it is possible to ensure that a prognosis/diagnosis is not communicated to a patient if they would rather not be informed. It's morbidly fascinating.

It does seem cruel, and it sounds like they both went through a horrible, horrible time. But if I'm honest, if I had a year to go and there was nothing that could be done, I'm not convinced I'd want to know.

Your dad sounds lovely, I hope he had many, many happy memories to treasure, and, in turn! that you do too thanks

justmyview Wed 02-Apr-14 00:27:15

I think in those days, doctors may have been more paternalistic. They may have thought that there was no point in upsetting her by telling her bad news and it was better for her to live in hope than to know the truth. I don't think that would be the modern approach. We're far more open now. How poignant.

theoldtrout01876 Wed 02-Apr-14 00:36:46

My mother has had health issues for as long as I can remember. She lives in Scotland

In 1992 I told her Id seen pictures on a doctors office wall ( here in USA ) and thought they looked like the marks on her skin. It was lupus.

On her next trip to the doctor she mentioned this as she was concerned about it being hereditary and Id just given birth to her first grand child.

The doctor looked at her and said "Mrs XXX you were diagnosed with lupus in 1969" shock

She had NO clue and had never even heard of it till I mentioned it to her

BumPotato Wed 02-Apr-14 00:55:18

My great grandma had bowel cancer in her early seventies. She collapsed on a day trip. She had tests, cancer was removed in an op, no chemo or radiotherapy was given. Family were told she was not expected to live. She did and died peacefully of old age, in her nineties. At no point was she told she had had cancer.

LesserOfTwoWeevils Wed 02-Apr-14 01:04:55

Cancer used to be a dirty secret.

I remember when my GM died of it in the early 70s it wasn't mentioned before her death (which therefore came as a terrible shock to some of the family) and her DDs didn't tell me and my cousins what she had died of. We heard it from someone else weeks or months later.

It was decades before my DM mentioned what her DM had died of.

MrsSeanBean1 Wed 02-Apr-14 01:19:53

I have had some experience of this and, to be honest, I can see the benefits to not telling someone if there is nothing to be done. 30 years ago my nan was told she had terminal cancer and had less than a year to live. It was found by accident during a routine examination. Up until the day she was told she was absolutely fine. I can remember the day she was told as I remember my mom crying. From that day she never got out of bed, refused all food and medication and died about a month later, mainly from malnutrition rather than the cancer. It was as if she had given up. There was absolutely no benefit to telling her whatsoever.

Fast forward 30 years and we are currently going through this with my other nan. She had a scan 2 weeks ago after becoming jaundiced and a large tumour was found on her pancreas. The scan results were faxed over to her GP who happens to be a family friend. The GP mainly deals with my mum when it comes to my nan as she is deaf and gets mixed up easily- she could not be responsible for making her own medical appointments etc.

The GP phoned and told mum that it was terminal pancreatic cancer. No one knows how long she has but pancreatic cancer tends to be quick. Bare in mind that my nan has just watched Hayley from Coronation Street kill herself after becoming bed ridden in pain with pancreatic cancer. What benefit would she gain from knowing the same fate probably awaits her? After discussion with the family we all decided that we should tell nan that she has cancer but that we should fudge around the issue of how long she has/what cancer it is etc. Luckily she hasn't asked outright. We just told her that she has cancer, that she has had it for years (true according to the docs) and that no one knows how long she has to live so she should just carry on as normal. She has accepted this really well and yesterday spent the day playing in the sandpit with her great grandchildren. Have we told her the complete truth? No! Do I think we are doing the right thing? Absolutely!

RandomInternetStranger Wed 02-Apr-14 01:31:15

I would not want to be told if I have a terminal illness. I would hope people would make my life as fun, stress free, easy and happy as possible, feed me shit loads of weed to avoid any pain and allow me to spend as much time as possible with my children, but I wouldn't want to know. No way. Why would you? Why would you want to spend the last days of your life knowing it was about to happen and you were about to be in serious pain and deterioration? I can't think of anything more depressing and terrifying.

BrianTheMole Wed 02-Apr-14 01:42:03

My dad died earlier this year. We knew he was dying, the consultant knew he was. But we didn't tell him. I know he suspected he was, I guess he knew we knew too. But for him, it really wasn't the right thing to tell him out loud. Everyone is different. Thats not a historical thing.

BrianTheMole Wed 02-Apr-14 01:42:35

I agree random.

rabbitlady Wed 02-Apr-14 01:45:36

my mum didn't have cancer, or any 'disease', but she died aged 79 a fortnight ago. in her last weeks, we were able to discuss what would happen to her ashes after her cremation, and she gave each member of the family instructions about how they should live in future. she couldn't have made her wishes known if she hadn't realised she was dying.

cafecito Wed 02-Apr-14 01:51:59

'Truth is the breath of life to human society. It is the food of the immortal spirit. Yet a single word of it may kill a man as suddenly as a drop of prussic acid'

cafecito Wed 02-Apr-14 02:06:31

sorry for your recent loss rabbit, it's good that you were able to have those talks.

In some circumstances patients are not told. I find it troubling when relatives know and patients do not
it's a balance of beneficence, non maleficence, autonomy - Kantian principles against what may be the better wider consequence
To tell the truth, and inform a pt may make them more compliant, less angry - able t put their affairs in order, avoiding an 'obstructed death' - it also helps maintain trust in the profession (89% of people believe doctors will tell them the truth always) and respects autonomy, as withholding information circumvents any potential to be self determining.
However there is considerable logic at times in not telling the complete truth to some people, and there is no legal duty to actually do so either. Psychoneuroimmunology etc - depression and white cell counts, 'first do no harm', the removal of hope..

MexicanSpringtime Wed 02-Apr-14 02:37:29

My mother always said she would want to know, but when it came to it, she didn't ask. I didn't ask either as I didn't want to know something she didn't.

It's hard one, my god-daughter got a very virulent cancer which she survived, but she suffered so much mentally from her fear of death and pain. And now the doctors say that she shouldn't be allowed to get depressed as the cancer could come back if she gets depressed.

nooka Wed 02-Apr-14 02:56:26

Thing is that it's not just about whether you as the patient know, it's also about whether your family know. My father was diagnosed with brain cancer the summer before last and died last January. He was told he had six months and that treatment wasn't an option. We were all devastated, but my father was slightly blase (possibly because the cancer was affecting the thinking parts of his brain). There is no way we could have hidden our feelings for six months, it was terrible enough watching him slowly lose his faculties, if we had had to pretend at the same time that he was going to get better it would have been truly awful. Plus how can you say goodbye to someone who thinks that they are going to get better? I know that was incredibly important to me and my siblings, and that my father's refusal to engage in conversations about funerals etc upset my mother (he said 'not yet' for a while and then he stopped being able to talk).

Also people approach death in very different ways, some want to do all sorts of wild and wonderful things before they die.

My Nan has leukaemia. Her consultant spoke to my Mum, explained everything, and advised that we don't tell Nan unless we really have to. She's in her late 80s, the reality is that she will die from old age before the illness gets her. Plus the treatment would almost definitely kill her, so it's not an option. It's horrible, hateful, and keeping this from her feels so wrong. But the alternative would be to tell her that she is ill, with no treatment options, and have her live out her years in fear. Also, if she knew the truth, she'd be likely to 'give up' mentally. It sits very badly with me, I really do struggle with it, would prefer to be honest with her, but my Nan's doctors, and her children have decided that this is the best approach. It is quite possibly wrong. But I suppose people do the best that they can with the information that they have sad. I'm sorry for the loss of your Dad, and I'm sorry that you have had to read about his sadness over his Mum's illness thanks

horsetowater Wed 02-Apr-14 03:03:33

I think it's wrong, patronising and painful to families to suggest they keep diagnosis to themselves. I can understand that attitude in 1972 but not nowadays.

RuddyDuck Wed 02-Apr-14 07:10:51

Unless the patient lacks capacity to understand the diagnosis, and a family member has POA with regard to welfare decisions, then no health professional should disclose a diagnosis to a family member without the patient's permission. I'm shock at the notion that doctors are still doing this.

Legally, there is no such thing as "next of kin" having the right to know information about a relative. You either have POA or you don't.

Yes, best interest decisions can sometimes be made in the absence of a POA, but only where the patient has been assessed as lacking capacity with regard to that decision, as asssessed in line with the MCA.

I would be livid if my gp and husband decided between them that I didn't need to know if I was terminally ill. I have full capacity and denying me that knowledge would be abusive, imo.

Octopusinabunchofdaffodils Wed 02-Apr-14 07:17:08

I would rather not know, even to the extent of not having treatment. I guess that is why I never go and see my GP.

HowContraryMary Wed 02-Apr-14 07:19:40

My dear friend was in a coma, transpired after many month of mis diagnosis (emphysema) she had lung cancer and the coma was a secondary brain tumour.

The family, bar one, decided it would be kinder to let her slip away. The bar one decided that was unreasonable and demanded treatment. The consultant gave her a massive amount of steroid to shrink the brain tumour and my friend duly came round.

The whole family dutifully decided she didn't need to know she was dying hmm and they would run with the glorified chest infection in her ear shot hmm. the doctors, without telling her what was actually wrong, managed to moot the question of whether she wanted to live or not, of course she said yes.

From an outsiders POV they maybe got two more 'good' months until she became really frail, bloated on steroids, hair fell out with chemo then there followed 4 months of indignity until she died.

People should make 'loving wills' my family know that is never ever to happen to me.

swampytiggaa Wed 02-Apr-14 07:31:02

My dad died in 1978 of cancer. He knew what he had but wasn't told it was terminal. Presume it was the done thing back then. I was 8. I didn't know anything was wrong with him. His death was a total shock to me.

Budgiegirlbob Wed 02-Apr-14 07:48:41

My dear dad died 6 weeks ago from cancer. He was told it was terminal, and from that moment he 'gave up'. He didn't get out of bed again, he ate very little.

But we all got the chance to say goodbye, to share our memories, to tell each other how glad we were to have been in each other's lives. Dad got to choose to come home, to be with his family when he died. He was given months to live, but he lasted 10 days after diagnosis.

Did knowing shorten his life? - definately.
Was telling him the truth the right thing? - absolutely .

Nocomet Wed 02-Apr-14 07:52:58

My Great aunt also had an operation on her bowel in which turned out to be cancer. They decided they'd got it all and didn't tell her.

Many years later it came back and became terminal.

They told her nethew and Neice but not her!

Thus as an 18y I had to say good bye to my favourite Great Aunt without saying good bye.

It seemed so utterly and totally wrong. She wouldn't have minded knowing.

She was no frail, senile old lady, she'd lost her fiancé in WW1, taught huge classes in the roughest end of Sheffield, nursed her mother and been at both her brothers bedsides when they died.

She had never married, her only family were grown up nethews and a niece and their DCs, her duties on Earth were done, she was 91and it was time for good bye.

I'm still angry it wasn't a proper good bye.

(She did find out eventually because she demanded to know why they were drugging her up so heavily)

StanleyLambchop Wed 02-Apr-14 08:04:58

My dad did not want to know, but they told him anyway. He just gave up- It would have been much better if he had not known. He did not use his remaining time to set his affairs in order either, we are still sorting through stuff nearly a year later. Not everyone has the strength to deal with that knowledge.

iliketea Wed 02-Apr-14 08:05:06

I have experience of patients not being told about their diagnosis, and family members telling me that thhey do no want their relative to know their own diagnosis.

If the patient has told me themselves (that they don't want to know) then I absolutely respect the decision. If the relatives have made the decision, then I let them know I won't bring the subject up, but if my patient asks me a question, I will not lie to them.

In most cases, in my experience, the patient is aware they are dying, they may not know what of, but often they are avoiding the subject not to upset their family, or so they can cope with the last few months.

There's no right or wrong answer, but if a patient wants to know and asks the question, most HCPs will tell the truth irrespective of a relative dictating what a patient should know or not.

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