Refusing hospital treatment

[Best74]

My father is at end stage Alzheimer’s . He is incontinent , unable to communicate, immobile and is on a puréed diet and thickened fluids . Since December he has had two hospital admissions requiring IV fluids and antibiotics. After being told he would not survive the night last week he is full here and did respond to treatment . We now have to make the most difficult decision which is does he start the end of life care pathway which will result in no further hospital treatment and him being kept comfortable. We need to do what is in Dads best interests but when you’re the only child this is awful.
We have a meeting with the GP tomorrow for some more information but this is the worst thing I have ever had to do .

 

[Grannie G]

Your doctor will be able to advise you @Best74.

We were told after two hospital admissions that antibiotics were no longer effective and we took the doctors advice to keep him pain free and comfortable, offer food and drink but don't force and leave him be.

It was very upsetting but we knew it was inevitable.

 

[Norfolk Cherry]

As a fellow only child I sympathise. I read the posts on here to prepare myself, and I think I would agree that Grannie g did the right thing. Wishing you a positive resolution to all of this.

 

[lambchop]

I agree with the previous posts. And it is one of the hardest things to do but it should never be completely your decision. Your dad's GP (who presumably knows your dad very well) should be able to fully advise you and help you to decide. You know how your dad is coping with his frailties on a day to day basis: whether he is distressed, in a lot of pain, refusing food and drink at any point, his sleep patterns, how he was in hospital during the admissions, and these are all additional pointers which will inform any decision-making. If you do decide on a palliative care pathway, you also need to discuss with the GP, the DNACPR (Do not attempt resuccitation) form which the GP and yourselves should keep.

I had a similar discussion with my mum's GP and we agreed that hospital admissions were not in mum's best interests. In my case, in the end, mum had a stroke and had to go to hospital but was put on a palliative care pathway there.

just to add, do you have a lasting power of attorney - if not, it may make things difficult regarding end of life care, should your dad be in hospital again. There are also useful downloads on the Alzheimer's website on end of life care, which are very helpful. I would also call the Alzheimer's helpline, just so you have covered as many bases as possible.

Good luck.

 

[Best74]

Thank you all for your comments .
We do have lasting power of attorney for health and welfare aswell as financial and Dad does have a DNAR in place.

We will speak to his GP today and see what he advises and make a decision.
I personally do not want him to keep having treatment and hospital admissions because I do not think it’s in his best interests and I think Mum feels the same but actually saying that is the most heartbreaking decsision I think I will ever have to make.

 

[70smand]

I totally agree with all the above advice and reading up on the Alzheimer’s website sounds a good idea to prepare you.
The end of life care pathway is really just a guide so you and the healthcare professionals are singing from the same song sheet. It allows you and your mum to discuss your dad’s future care and how he is treated should any given situation arise but nothing is set in stone and as things happen each symptom or situation should be discussed separately. It sounds like you have all ready decided what’s best for your dad with no further hospital treatment but measures can still be taken place in the home ready to manage any given symptom with the help of district nurses and maybe hospice nurses if necessary. It would be a good idea to have a family member or friend with you during these discussions to help take on board all that is said. My thoughts are with you and your family xx

 

[Hazara8]

My father is at end stage Alzheimer’s . He is incontinent , unable to communicate, immobile and is on a puréed diet and thickened fluids . Since December he has had two hospital admissions requiring IV fluids and antibiotics. After being told he would not survive the night last week he is full here and did respond to treatment . We now have to make the most difficult decision which is does he start the end of life care pathway which will result in no further hospital treatment and him being kept comfortable. We need to do what is in Dads best interests but when you’re the only child this is awful.
We have a meeting with the GP tomorrow for some more information but this is the worst thing I have ever had to do .

Focussing on your father's best interests is really the key. The whole period up to this point, the treatment, expectations, uncertainties and all the rest of it, is in itself an ongoing strain. Just as long as you are clear in your own heart and mind as to what you know is the best for your own father, that will - later on - address any pangs of doubt, or ifs and buts which can prove very demanding on one's health. These moments are very acute and the range of emotions and even physical feelings which can come about, are often quite overwhelming. When a medical team in charge of events are acting just as they should, you will get the proper response to your questions. The GP can prove integral in all of that. At the time one does not always address the fact that the 'quality of life' in respect of dementia in our loved ones, is at a stage which almost provides the compassionate answer one is seeking. Yes, of course it is probably 'the worst thing I have ever had to do' and anyone having gone through this process will endorse that without question. All the clinical decision-making aside, in the quiet moments away from the hospital environment, dwell on that fundamental - "what is truly best for Dad". That alone affords a degree of solace, amidst a plethora of conflicting thoughts.