Problems with palliative care team.

Gareth48 8 years ago

4 replies

Edited by Gareth48 8 years ago

Hi all,

My father has 3 critical illnesses but it's th AAA aortic anyorism that has put him in immediate danger.

The hospital and nursing support has been fantastic but we are having problems with the palliative care team who seem intent on ignoring any of our wishes and continue to try and push my father into a hospice.

On 3 seperate occasions my father and mother have both said very clearly it was not an option.

He is comfortable and seemingly mediated to perfection but they now want to change the delivery from pump to patch. No logic to this as mentioned before he is in no pain, lucid and comfortable, so why change!

Has anyone else had problems with negative palliative care or any suggestions on how to get them to stop aggregating a stable situation?

Getting so frustrating.

Thanks.

Clare 8 years ago

Hi Gareth48,

I’m sorry to hear you feel that your father’s wishes are not being listened to. Hospitals have a service for patients and their families that can help resolve concerns that someone is having when using the NHS. In England, for example, it is called the Patient Advice and Liaison Service (PALS) and in Scotland it is called  Patient Advice and Support Service (PASS). You can see more about the service for each part of the country here – https://www.mariecurie.org.uk/help/being-there/practical-legal-matters/complaint/health-services

Has he been able to write an advance care plan? This is where someone can put down things like where they would or would not want to be cared for and their views on particular treatments or types of care. It can’t guarantee the way your father would be cared for however an advance care plan ensures his wishes should be taken into account. You may wish to look at this in more detail - https://www.mariecurie.org.uk/help/terminal-illness/planning-ahead/care-planning

If you would like to talk about things in more detail please call our Free phone Support Line on 0800 090 2309, or drop us a line via Web Chat: https://www.mariecurie.org.uk/help

Best Wishes

Clare (Marie Curie Support Line)

Gareth48 8 years ago

Hi Claire,

Thank you for your message, we did try but they just would not listen. 

Unfortunately the constant badgering and repeat questions when already answered put to much pressure on him and he passed a few days ago.

If only they had listened, he may have had a calmer and more peaceful death but Unfortunately their actions caused a very angry and undignified parting.

I have decided not to make an issue of what happened as this would only make my mother aware, at this point my mother thinks he went peacefully and that is all that matters.

Best wishes,

Gareth.

Clare 8 years ago

Hi Gareth,

I’m very sorry to hear about your Dad’s death. Losing someone we love can be a very painful time. If you or your Mum would like to talk please don’t hesitate to call our Free phone Support Line on 0800 090 2309, or drop us a line via Web Chat: https://www.mariecurie.org.uk/help

Best Wishes

Cla re (Marie Curie Support Line) 

Lisa77 7 years ago

I am so very sorry to read what you went through, as a family. I know your not keen on making this complaint more official. But sometimes the only way that services can be improved is for light to be shone on the matter?. I understand on not wanting to cause your mum any further pain or heartbreak completely, I do? I'm asking you maybe reconsider on following it up , without explaining to mum? Independently? . That way if your lucky enough to ensure that no other family goes through the same unnessesary heartbreak of losing a loved one and their wishes being ignored in the same way?. I think that if even one other family was spared this indignity. It could be a fantastic legacy for your father?. Please forgive me if me writing this causes you any more pain?. This is sincerely not what I intended. I think if you have a great outcome your mum could be comforted in knowing a diffrence was made?. Like I said please forgive me if iv hurt you in anyway?. I believe it's not until they are shown that their not helping , they will never change.. I'm truly very sorry for your loss. From the bottom of my heart.. god bless. x