Definition of Palliative Care

[phillipa]

Just got off the phone regarding the proposed chemo treatment for Kent. it appears our definition of palliative and the 'hospital's' definition of palliative are two different things.

To us palliative means gentle.

According to the conversation we have just had palliative means radical. Depends on body mass, kidney function and how well patient tolerates the treatment. We were asked what if the tumour grows into the oesopagus and Kent will need radiotherapy to control it. I said that wont even be considered, because our beliefs are at the end to let Nature take it's course and there will be no such treatment. Not liked at all. They are going to give us 24 hours to re-think about the chemo.

Then we were asked if we would like to speak patients who have tolerated the treatment, I then asked has their quality of life improved? There was no answer.

I cannot understand why they want to inflict suffering on someone just for a bit of extra time with no quality of life?

Kent has no pain, just the cough

So, what is the definition of palliative?

[dtay]

Hi Phillipa - I would go along with your definition of what Palliative care is. Make sure you choose the treatment that YOU want and not what they want Kent to have. I think Doctors make it very difficult for you to voice your opinion, I am always made to feel like a fool when I query things with Dads Dr's. But it shouldn't be that way and you are entitled to be heard !!!!
Love to you both
Dawn x

[phillipa]

Good morning Dawn

I rang the cancer support nurse this morning and voiced what Kent and I discussed last night. At no time have they asked Kent what he wants, he wants the tumour kept as it is with pain relief when it happens. he does not want the tumour shrunk with 'radical' treatment and the associated side effects. he downloaded NICE's definition palliative care and also the National Council for PalliativeCare definition. NICE's seems to co-incide what the doctor's want, not what the patient wants.

[norfolkbirdie]

Hi Phillipa

I don't think it's about what Palliative care means I think you are saying to them " We don't want radical treatment and please respect our wishes and treat us how we want to be treated" this is the point that so many doctors don't like to listen to because it goes against everything they have been trained to do which is "CURE" patients. They try to offer everything within their power to effect a cure and when they can't then this great word Palliative appears!! So we all need to stand up to them and ask that they listen to us and respect our point of view.
I was also relating to your point of being asked "Do you know what's wrong with you?" at all stages in Dave's treatment from day 1 every time we have met a new Doctor or nurse the first question they ask is this ( I understand some people may be in denial or not have taken it in) it drives me crazy and always I have to stop myself from making some smart remark like "no, did you take my husbands lung out to help him to get slimmer?" or some such stupid comment. It is a little patronising and unneccessary after the first time.
Keep telling the docs what you both want and eventually they will listen to you!! I had to have a stand up frank discussion with Dave's Oncologist before we got to listening to each other properly and now we have a great relationship, he asks us what do we want him to do for us!!!

Take care thinking of you both
RosXX

Ros

[phillipa]

Ros,

Thank you. I am so glad that I am not marching to a different drummer. We were promised a phone call at 5pm regarding this. The phone has not rung. Perhaps they are ignoring us now. How cynical I am becoming. Did get a call this afternoon from the Macmillan nurse, well I think that is what she said, she coming to see us tomorrow at 11.30am. i don't know what she is going to do. it could be interesting.

[dtay]

Hi Phillipa - what great advice from Ros, and she is so right, you have to stand up for what you and Kent want.
My Dad has just had a visit from the Macmillan nurse but she said she couldnt do much apart from be there if he had any questions.
Hope you get it all sorted out.
Thinking of you both
Dawn x

[norfolkbirdie]

Phillipa/Dawn

Quick question for you both, what do Macmillan nurses do??? I have heard about them but don't really know how they could help??? Info from anyone out there as well. How do you get hold of them??

Hope they called you back Phillipa??
Ros

[dtay]

Ros - have just spoken to my sister and Dads Hospital gave my sister the number to contact the Macmillan nurse (she is a specialist lung cancer nurse) - found this description of what they are, hope it helps ----

What is a Macmillan nurse?
Macmillan nurses support people with cancer. A charity called Macmillan Cancer Relief set up the posts originally, and many of the nurses keep the name Macmillan as recognition of this. Some of the nurses specialise in advising people with certain types of cancer, for example breast cancer or bowel cancer. In specialist palliative care services or teams, a Macmillan nurse is another name for a palliative care nurse specialist.

Dawn x

[norfolkbirdie]

Dawn
Thanks for this but what can they actually do for you?? This is the bit that confuses me, we haven't been offered any contact from them and wonder are we missing out or is there no point? Just can't quite figure out how they fit in.
Ros

[sharon]

Hello Ros,
Im new to this site, have just was sending amessage when my computer crashed so sorry if you get it twice!!
Would like to tell you my experience with a Macmillian Nurse, Our GP called her when we went for a routine appointment the Nurse called out the very next day! She advised us on everything she answered the questions we wanted to ask the doctors, She filled out forms and applyed for benefits that we did not even Know about. They paid us a one off payment of £500.00 pounds and our benefits were here within a week or so (Under the special rules Martyn being terminal incurable). Prevously we had our own business which we lost due to the cancer and a manager who ripped us off for £30,000.00 while martyn was in hospital in criticle care!!! Our nurse arrange for a representative from Citezen advise to call to our house to advise us and help put our affairs in order all free of charge. The Nurse also gave us booklets for our children to help explain whats happening with their Dad. She arrange for us to recieve complimentry reki, massage, reflexology, balancing at our local hospice. she is allways only a phone call away and will visit us on the day if not the next morning. So I would recommend a Macmillian nurse to everyone.

Best of luck

Sharon

[norfolkbirdie]

Hi Sharon

Thanks for responding with your experience, sounds excellent!! So they are not really nurses more social care is that what they are for?? I couldn't get my head around the nurse bit. Thanks will have to ask our GP about them, we might get some benefits too!!!
Ros

[phillipa]

Latest update.

The Macmillan nurse came, she had a talk and it appears she is willing to talk and explain what kent wants. She is part of a palliative care team. i really can't see what use it is for us as we have done everything for ourselves, but time will tell.

While she was hear Georgina (cancer care nurse) rang and Kent told her again, unless Dr Gilligan is prepared to listen to what he wants, kent is not prepared to go ahead with the chemo
We have Dr Gilligans definiationn of Palliative.

Radical is Radiotherapy with full dose chemo

Palliative is full dose chemo and nothing less.

This NOT what Kent wants, he is will try chemo so long as it is not full dose. he does not his qualiuty of life compromised.

He told Georgina Gilligan is sacked, because a doctor who will not listen to his patient is a fool.

Georgina got Gill Stent the Cancer Nurse Practitioner to ring and kent Lost it, told her exactly what he wanted and not to try and flannel him with Gilligan's definitions and he hung up.

Georgina rang back, I am not sure what was said, but gathered he said to find him another oncologist who will listen. The chemo is off and she can cancel the eGFR scan scheluded for Tuesday, as he is not going ahead with the regime Gilligan proposes.

All he wants is to be reassured the chemo will be given at a lower dose over a longer time. Kent is not prepared to comrise his quality of life.

Liz the Macmillan nurse said she understands what Kent means and agrees as he has no pain, just the cough, and he is happy with the status quo, why do something that might compromise life as it is at the moment. Funny bit is Gilligan will not tell kent how much longer his life exectancy might be if Kent agrees to Gilligan's definition of palliative chemo. Will it bo one or two months longer? He never gave an answer, as nobody knows.

[phillipa]

Further update. kent sees a Dr Hugo Ford on 17 May 11.15am. let's see if he will listen and yes, Liz chased the DS1500 and it is in the post to us. How dare they decide to withhold it on the strength of Gilligan's consultation. Looks like open warfare to get the treatment Kent wants. Ford will be sacked if he doesn't listen.

[dtay]

Hi Ros - I think you are right about the Macmillan nurse - my sister says that they have told my Dad they can give emotional and practical support. To be honest my Dad just likes to have a bit chat to her !!!

Hi Phillipa - pleased that you are getting somewhere at last.

Love
Dawn x

[Deanne Jenkyns]

Hiya Phillipa,
Thank goodness you finally seem to be getting the point across! How frustrating to have to go through all of this to finally be heard! One thing I will say about Jimmy's oncologist when we don't agree and challenge what he says, he listens to what he wants and always says your the boss, so I suppose we should be thankful for that at least. The trouble is patients don't often challenge and they just accept what they are told and go along with it, which is scary as it is often not the right path to take. Sending you both lots of luck!


Deanne
x

[dtay]

I agree, the Oncs are not used to people challenging their decisions and somtimes dont like it - but you have the right to CHOOSE.
Dawn x

[phillipa]

Tonight both of us are happier. There is no right or wrong with this, the end line is the same, but when we reach it, we want to say we chose the right way for us. I am sure what you say regarding the oncologists not liking to be challenged, but after all it a person they are dealing with not a disease and this something they all seem to forget.

If what they offered was going to end in a cure, there would be no hesitation. They are not offering cure.

[norfolkbirdie]

Hi Phillipa
Just read your posts with incredulity!! Kent is the patient and has the right to accept/deny/question all offered treatment and only he can say what he wants. I know the Oncs are only offering what is standard treatment for his cancer, at this stage but I think that's the problem ,we are not "standard human beings" and want to be treated as unique individuals. I think if you feel a part of the decision making and have some control of treatment then you must tolerate it better and react better, don't you???

I hope the new Onc has better skills and is able to offer what you want Good luck and I hope he responds to your needs.

Keep fighting
Ros

[phillipa]

Hello Ros,

Sorry for not replying sooner. I am just emotionally exhausted with all of this. I never thought we have to fight again to get what we want. These Oncs maybe fantastic, but they seem to lack something. To be so inflexible without explaining why, is galling. I can only think about Kent's Oncologist up at Cookridge, he will ring and not get a nurse to do it. Perhaps this is what is missing the peronal touch.