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PCUK Nurse Jeni
Posts: 1070
Joined: Mon Jun 14, 2010 1:30 pm

Re: My Dads diagnosis

Postby PCUK Nurse Jeni » Thu Nov 12, 2015 11:34 am

Dear Alison,

We are very sorry to hear of your dad's passing.

On behalf of the nurses here at Pancreatic Cancer UK, and indeed, the wider charity, please accept our heartfelt condolences.

Kind regards,
Jeni.

allyc1
Posts: 68
Joined: Tue Jul 14, 2015 7:57 pm

Re: My Dads diagnosis

Postby allyc1 » Fri Nov 13, 2015 2:40 pm

Thank you all so much xx

allyc1
Posts: 68
Joined: Tue Jul 14, 2015 7:57 pm

Re: My Dads diagnosis

Postby allyc1 » Sat Jan 09, 2016 11:53 am

I haven't been on here for a while since my dad passed away in Nov 2015.
I would just like to know peoples views on the end of life care of their loved ones. My dad found it difficult to come to terms with his diagnosis, and maybe it was his way of dealing with things,when he was admitted to hospital back in Sep15 he was deteriorating which we all knew as the cancer had spread to his liver. The Dr came in when my dad was in a ward of 4 with no privacy, and started asking him if he had thought about end of life care, where he wanted to be etc?. We said we didn't want to talk about it! My dad struggled to talk about it, maybe thought he had a glimmer of hope and as I said his way of dealing with it. She persisted to talk about it, I walked out in tears and so did my dad. I have never seen him cry, but he sobbed. He had some down of breakdown because of this I believe. He thought he was never coming out of hospital, he didn't eat, constantly asking for reassurance, and he was never the same again.
I have put a formal complaint in, which I did back in Sept also, I was promised a letter from the Dr concerned before my dad passed away, not yet received it, we are in Jan 16 now and I have put another complaint in about the last complaint. I was told they forgot to ask her to write the letter! I am disgusted at how my dad was treat and how unimportant it all is to them.
I would like to know if anyone else has been through something like this? I believe the way they tell terminally ill patients needs to be looked at, each person is individual and some can take the news better then others. I believe they should speak to the families more, they know the patient better then anyone.
I would really appreciate your views on this
Sorry about the rant but I just feel we could have had more quality time at the end, instead we saw my dad so frightened and upset

Alison x

sandraW
Posts: 1039
Joined: Thu Oct 31, 2013 5:38 pm

Re: My Dads diagnosis

Postby sandraW » Sat Jan 09, 2016 1:14 pm

Alison,
I feel so much for you my love, its bad enough loosing your Dad without having to go through all the extra totally unnecessary hurt, you were all caused, and the fact you have had to wait so long for a reply makes it doubly hurtful.
Trevor, my husband never wanted to talk about dying either, I was lucky and when we were near the end Trevor did ask our consultant's registrar how long he had left, she asked him if he was sure he wanted to know, he said yes and she said he had only weeks, in fact he died 10 days later.
I do always try to look at things from all sides and I suppose the problem for the doctors is they deal with death all the time, and they do have and want to try to give patients the right to die where they want. Its just that some of them seem to be so bloody insensitive, probably because they find it hard to do. I do agree they should sound out family members, and find out what they think about how the patient feels about dying, the other problem is of course, they are probably bound by law to find out about these things. I am quite controlling, I think, and the hospital did do everything through me. The Consultant dealing with Trevor on the ward did asked him if he wanted to know what was happening, this was a few days after the Registrar spoke to us, and Trevor said no but that I would want to know, so we went out of the room and everything was explained to me alone.
As soon as I went back to Trevor he wanted to know what they had said, I toned it down for him, but I think he still understood really.
I hope you get some closure on this, not that anything will change the way you feel, and hopefully by bringing this to the doctors attention, it will make them better at doing this particually hard part of their job.
I still remember when the registrar, told Trevor he only had weeks she had tears in her eyes,and she came back the next evening to see us before she went off duty, and said she had been thinking of us all day again with a tear in her eye, it made me realise its hard for them too.
Sending a big cyber (((hug))) please take care love sandrax

J_T
Posts: 954
Joined: Sun Mar 24, 2013 8:15 am

Re: My Dads diagnosis

Postby J_T » Sat Jan 09, 2016 1:45 pm

I find totally unacceptable. We had those conversations but in the privacy of our own home. I cared for Ray at home with the help of DNs and Macmillan. It was our GP who broached the end of life subject. Of course it was difficult but she was excellent in her approach.

We did have an occasion when a replacement Macmillan nurse came instead of our usual one. The DN was in the room doing her thing and this Mac nurse started asking Ray all these questions about how he was feeling etc. He said 'can we talk about it later', she persisted, he said 'I don't want to talk about it right now', she persisted. I said 'I don't think he wants to talk about it now' she said 'No, he doesn't does he?!'. I told her to go downstairs and wait. The DN was flabbergasted and said 'she doesn't get it, does she?' - Understatement. I didn't complain but the DN must have mentioned to someone because when our regular Mac nurse returned she knew all about it and said it would be dealt with.

Making it known that things aren't right is imperative imho. Stuff can't be put right unless the organisation concerned knows about the wrongs. Following that I made sure if we weren't happy with anything we let them know!

Sorry you have to deal with it. xxx

Didge
Posts: 825
Joined: Sun Dec 29, 2013 10:35 am

Re: My Dads diagnosis

Postby Didge » Sat Jan 09, 2016 3:19 pm

Alison, it was totally unacceptable and it is also appalling that you have still not had a reply. I expect they are told that they must ask 'difficult' questions but that is no excuse for dealing with it in this way or indeed persisting at all if it is clear that the patient does not want to discuss it or is becoming distressed. When Rob was in the hospice ward, I remember one of the nurses asking 'if you become very ill, where you prefer to be' and he replied 'do you mean where do I want to pop my clogs?' and she then admitted that was what she was referring to, but it was done sensitively and I know that if he had not wanted to talk about it, she would have left it for the time being. Doctors like the one you encountered need to be told (or retrained!) or they will continue to upset people! I do hope you get a response before too long. Didge x

allyc1
Posts: 68
Joined: Tue Jul 14, 2015 7:57 pm

Re: My Dads diagnosis

Postby allyc1 » Sat Jan 09, 2016 5:57 pm

Thankyou all for your responses.
I don't know what the answer is, but if my complaint stops another family going through what we have it will be a result.
Will keep you posted

Alison xx

Fifi

Re: My Dads diagnosis

Postby Fifi » Sat Jan 09, 2016 6:16 pm

Alison,

I am completely with you on this.

My Dad didn't take his diagnosis well, why would anyone? He was so upset, so often. He was very frightened to die. I do not like Macmillan nurses. I did urge my Dad ( when he was ok ) to get one. He didn't want to, but I sort of forced him to. The nurse that went to his house, asked him if he had planned his funeral, and if he had thought about where he wanted to die.

When we went for Dad's last scan results, the oncologist told us the chemo hadn't been working, but he wanted to keep Dad in to sort out his pain ( he had 3 broken lower lumbar bones ).

While we were waiting for a doctor to come and help, and macmillan nurse came in and said "I deal with palliative care, do you know what that means ". My Dad said no. She then said " I deal with end of life care ". I looked straight at my Dad, and he said " do you know....." He then put his hand to his face and was completely still. She said come on Mr XXX (name removed - moderator) , say what you were going to say, I screamed saying he was having a stroke.

The fright of being told his chemo hadn't worked and then that, hastened his death. That haunts me every minute of every day. I cannot imagine for one moment what that would do to someones mind. I was always very sensitive to my Dad's feelings and did everything I could to help him.

I went to see my Dad the next day in hospital and he just looked at me. He never spoke again, and could only move his left arm. He couldn't even hold his own head. My absolutely wonderful so much loved Dad died a week later.

The fear he must of felt must have been so immense to bring on a stroke.


Leila xx

allyc1
Posts: 68
Joined: Tue Jul 14, 2015 7:57 pm

Re: My Dads diagnosis

Postby allyc1 » Sat Jan 09, 2016 9:02 pm

Leila
I can sympathise with you so much, that must have been terrible for you. My dad went very quiet and withdrawn, and I guess he just gave up. He wouldn't eat, didn't want to go out, basically he thought what's the point! Which I can see where he's coming from. Why would you fight anymore? When they say you have weeks or days. I like you will be haunted till the day I die. The fear in his eyes, sobbing uncontrollably, I can't get it out of my head. I feel robbed of the precious times we should have had at the end, instead we had all the heartache that the so called Dr caused!
Alison xx

PCUK Nurse Jeni
Posts: 1070
Joined: Mon Jun 14, 2010 1:30 pm

Re: My Dads diagnosis

Postby PCUK Nurse Jeni » Mon Jan 11, 2016 4:47 pm

Hi all,

Whilst we are very appreciative of differences of experiences across the country when it comes to end of life care, and indeed, different bedside conversations your loved ones have had with various health professionals, we would like to respond to the current topic.

The truth is, that as health professionals, we also have a “duty of care” towards every patient to make them aware of their situation, what is going on, and what their wishes are going forward – this is why we have things such as advanced directives to help people make choices about their own lives and end of lives. It is also extremely important to help as much as possible, to prepare a person for their death – this is much a part of treatment for every individual. Doing this well can deflect fears and help the person to verbalise how they are feeling, what their main fears are etc….Is is very important that health professionals engage in every aspect of a person’s life, which includes dying, and help them to “die well”.

Whilst this may not want to be a conversation a patient wishes to have at a given time, we also know well that such wishes change from week to week, and this is why the subject can be broached more than once – its not an attempt to make the person feel bad or stressed, its just to “touch base” on the topic, and see if the degrees of openness has changed since the last time. As professionals, we really should be checking this, in order to do our best for every patient. The other thing is, and it may be hard to accept this especially if you are very close to a loved one, but sometimes what folk will want to discuss with their nurses or doctors, they don’t want to speak to family about – and again, we need to create a forum in which they can do this should they want to. This may be because they are scared, and don’t want to admit this to a loved one, or they don’t want to burden a loved one with sad news. It might be too that the health professional relationship can be at “arm’s length” – so, they can “offload” without having to dwell on a topic and also, because to a degree, there is not the emotional attachment from the health professional, so mainly they won’t get as upset like a family member would. (I am not saying HP's don't get upset, as we do - we are human too).

Everybody is different. Having worked in oncology for the past 15 years, I have seen every degree of this. I cannot align myself to a notion where nurses or doctors set out to “deliberately” stress a person out, or cause them upset. I agree there are degrees of communication skills – as there are in every walk of life, and if anything, constructive feedback is the way forward in terms of a learning outcome. Most of this, if fed back in a courteous manner, will be taken on board.

I would also like to make a comment on the below comment on the forums:

“The fear he must of felt must have been so immense to bring on a stroke.”

We just need to be very clear about the causes of stroke – first of all, strokes are caused by either a blood clot obstructing the flow of oxygen to the brain, or by a bleed within the brain. Pancreatic cancer has a high incidence of blood clotting, and this risk increases even more when the person is on, or has had, chemotherapy. There is no evidence that a “fright” or fear causes a stroke. The clotting process is a very complex one, and it does not occur in a sudden space of time, and there is no evidence that “fear” can alter the blood clotting functions such that a stroke is brought on. It is likely this would have happened anyhow, as is so often the case.

As always, we aim to keep a balanced view of whats happening, and aim to provide explanations from clinical evidence.

Kind regards,
Jeni, on behalf of Support Team.

Fifi

Re: My Dads diagnosis

Postby Fifi » Mon Jan 11, 2016 5:37 pm

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
Last edited by Fifi on Tue Jan 12, 2016 10:45 am, edited 1 time in total.

Didge
Posts: 825
Joined: Sun Dec 29, 2013 10:35 am

Re: My Dads diagnosis

Postby Didge » Mon Jan 11, 2016 11:14 pm

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
Posts: 228
Joined: Tue Apr 30, 2013 11:03 pm

Re: My Dads diagnosis

Postby MSH » Wed Jan 13, 2016 10:54 am

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
Posts: 825
Joined: Sun Dec 29, 2013 10:35 am

Re: My Dads diagnosis

Postby Didge » Wed Jan 13, 2016 5:42 pm

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
Posts: 68
Joined: Tue Jul 14, 2015 7:57 pm

Re: My Dads diagnosis

Postby allyc1 » Wed Jan 13, 2016 5:46 pm

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