My Dads diagnosis

[Guest]

Hi Jeni,

Thanks for clearing that up.

It just must have been a massive coincidence that he is told he is going to die very soon, and having a nurse that specialises in end of life care.

My Dad didn't have a " fright ", a spider never ran across his carpet. He was absolutely petrified to die. From the moment he started getting liver pain, he sobbed and sobbed, to me, his daughter. Who he felt totally comfortable to share his feelings to. He didn't want to show his feelings to a stranger. He wanted me. He only ever wanted me. No one know how it must feel for someone diagnosed with a terminal illness, until it happens. My Dad fought so very hard to live. He never wanted to die.

Leila

Edited January 12, 2016 by Anonymous

[Didge]

Jeni, while I appreciate that no health professional sets out to distress a patient, that is undoubtedly what has happened in a couple of situations here. I do not believe it is, or should be, a 'duty of care' to 'make' patients aware of their situation. It is completely up to the patient whether he or she wants to engage with their situation (and the likely outcome) or not. And many do not. Even with diagnosis, doctors will often ask if a patient wants to know their prognosis or not and often only then when the patient has broached it. They do not seem to see it as a duty of care to 'make' the patient understand that they may only have weeks left to live. As for end of life plans, most people die without having any plans and do not seem to suffer any stress for not having them. In any case, end of life plans seem to me to be a bit like childbirth plans - what may seem a good idea on paper, may not be what the person wants when the time comes. I do however, think it is a good idea for nurses/doctors to make sure patients know they can ask them anything that is worrying them at any time. This is all most patients need to feel able to ask those awkward questions - but it must be up to the patient to decide when they want those discussions. What has happened in the cases we have heard of, is completely wrong. That's my two pennyworth anyway!

[MSH]

Given that for most of us pancreatic cancer is a terminal condition, I think it would be unethical as well as untruthful for doctors to give any expectation of cure to anyone not having surgery. I also think it important to prepare psychologically for death, and to have the opportunity to influence end of life care. Of course such plans need to be flexible and individuals will proceed at differing rates, and their physicians should be sensitive to this. There is a certain tension between the hope that there will be a good response to treatment and the realisation that even a good response will fail eventually. That is a balance we must find, but that is much easier when discussion can be full and frank.

In my professional life terminal care was extremely important and could be a source of great satisfaction. Now I'm on the other side of the divide my aim is as Jeni mentions to "die well".

Mark

[Didge]

I agree, Mark, and I am not aware that doctors mislead patients into believing that treatment will cure PC. Most sufferers accept that it will get them in the end, but focus on the 'not yet'. There is a world of difference in receiving a distressing answer to a question one has asked and having information that has not been asked for, thrust upon one. Having now lost two partners to cancer plus many close friends, the experience I have had is that the individual has to drive what is discussed and many die peacefully with minimal discussions with health professionals (if any) on end of life plans. If a doctor or nurse is causing distress to patients by insisting on talking about end of life, that is a failure - it means that it is not what they want, not now, and possibly not ever. I fear that the way it is sometimes being put into operation is reminiscent of the Liverpool pathway - devised with the best intentions, but sometimes clumsily carried out by people without the sensitivity to know when to put it into practice! It is an extremely sensitive subject and should be handled by those who perhaps have more sensitivity and experience than most.

[allyc1]

I must agree with Didge, I think it should be up to the individual. My dad was vulnerable and unable to deal with the news, I'm sure he isn't alone there. I understand they shouldnt be given false hope, but neither do they need it ramming down their throat continuesly. When my dad did seem to perk up a bit, he would get knocked down again. If he used to say he felt a little better and fancied a walk the palliative nurses would day your only going to get weaker! I just think everyone should be treat differently, with compassion not like the Dr we saw. I don't think there is anything wrong with a little bit of hope, it would have kept my dad going I think. He just gave up, which I can understand. In his mind what's the point carrying on. It would have give us some more quality time with my dad instead of seeing him so desperately unhappy.

Alison xx

[Guest]

Absolutely Alison, you are very right. Not everyone is the same, or we would all be robots.

Only you knew your Dad, and how he felt, and what he was 'capable' of hearing and dealing with.

When my Dad had the stroke, he couldn't move, or speak but his mind was fully there. The Oncologist wanted to tell him there was nothing more they could do for him. I told him he was welcome to speak to Dad, but not to say that. Dad knew what was happening, he didn't need the added stress of it being pointed out to him.

We wasn't treated as bad as you and your poor Dad, we only had bad treatment from the GP and the Macmillan nurse.

You probably have a very tough fight ahead. They look after their own, I've seen and read a lot of that. But so do we Alison. I will always fight my Dad's corner, always. I know you will too. Your Dad will be so proud of you.

Leila xxx

[allyc1]

Thankyou Leila.

Alison x