PSP Association

Must doctors treat everything?

Having been diagnosed over 7 years ago - first with PSP, later changed to a CBD as symptoms developed- and suffering a severe stroke five years ago, my 85-year-old mother is now in a completely ‘locked-in’ state as she cannot move or speak at all. To the extent that we can only guess at what she may be feeling or thinking.

My question is... why on earth does her doctor continue to prescribe life-prolonging drugs such as antibiotics (2xcourses for a recent chest infection) and daily anti stroke medicines, and low-dose antibiotics (to prevent urinary infections) at the insistence of my father? When I feel strongly that such drugs are not in her best interests as a patient? I so want my lovely and beloved mum’s suffering to end and feel that she should be allowed to tiptoe out of the room. And am becoming increasingly angry at her doctor. Does anyone know ethically and legally what doctors are allowed to do (in terms of NOT prescribing drugs) and/or have any similar experience(s) to share that may help? My poor mum is surviving on thickened liquids alone and has absolutely no quality of life now! Thanks so much for any help you can give! With love to all in hard times! Xxx

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If your father has POA he decides.

My husband, well before this stage, made it clear his views of quality of life. I was in agreement, and, when he was ready, the doctors were in agreement at stopping treatment. Others on this site have done the same.

If your mother didn't record her wishes then it is up to your father.

I know how distressing this is.

Jean

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Thanks Jen

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You may want to bring in Hospice Care people. They may be able to talk to your dad and help him line up his thoughts about how he is seeing the future for your mom.

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Thank you Alicia. I am considering this but my father refuses to seek hospice help as he can’t accept the fact that my mother is beyond her time now. M xxx

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Oh, that is such a hard situation, and a difficult decision to be faced with! My thoughts and prayers are with you!

This information is very specific and may be upsetting for some. I apologize if it does upset you.

It all comes from personal experience of caring at point of death of two loved ones.

My unprofessional opinion would be, your mum would need to have in place an End of Life care plan, you or your dad a Power of Attorney over your mum's care and wellbeing. Your dear dad would also have an opinion, which currently does not appear to agree with yours.

Check too whether the doctor concerned deals with Hospice care on a regular basis. Their attitude may be different with such experience.

If it is possible or ethical to influence your mum's doctor, then you and your whole family need to be of one accord.

There are no doubt others here will have clearer experience of how this situation can be dealt with, but this is my experience.

Others here who have been able to express their opinion, have refused food, fluid and medication to hasten the inevitable.

I learned that where pain or other discomfort close to an obvious end of life situation, is an issue where some doctors, who regularly deal with end of life, will prescribe morphine over a short period, which alleviates pain. One side effect of morphine is to also slow heart rate.

Have seen this happen twice, when family have been advised by doctor that they believe end of life is imminent, and treatment with morphine may precipitate this.

Both my father (in UK) and my husband (NZ) were both treated with care and respect by both doctor and nursing staff (as was I) during the 1-4 days of treatment course. Both had swallowing and coughing issues, and both had peaceful passings. In both cases, I had no doubt this was the right course of action, but it was the doctor who made the decision. I just had to agree and I understood the consequences.

I had POA only for my husband. We never discussed end of life. My father was the same, but don't think POA for health and welfare was in place, just for finances.

I so hope you are able to resolve this awful state by talking with family and doctor together. In my opinion this is absolutely the worst to be faced with! I hope you find comfort for your mum and your family soon.

Big Hugs and Prayers for you and all your family. And to your dear mum - a prayer for peace!

Jen xxx

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Thanks Jen - I have an appointment to speak to my mothers doctor this week and will try to see if my father and sister will be present for a meeting with the doctor soon. I am very anxious about raising this issue with my father as he is extremely protective of my mother and seems to want her kept alive at all costs. Such a delicate balance... m xxx

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As I said I've been here and agreed with my husband to stop treatment but it was still a most painful thing to agree to. I had no doubt it was right but still yearned to delay the end. The support on this site was invaluable.

I do empathise with your father. I'm good at denial too.

love Jean

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He is closest to your mum having spent so many years with her. It will be extremely hard for him.

Give him lots of love and try to talk with him about it! Know it will not be easy!

Big hugs

Jen xxx

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I encourage you to have your family at this meeting. Especially your father because without his ok , nothing more can be done.

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Hi.

I really cannot add to the replies that have already been sent which cover everything. I hope that your mother's doctor will talk to you although without 3rd party consent he/she may not be able to do so. If it happens then I pray that your father and sister will be able to come with you and that an understanding can be reached without it alienating you.

If it does not, does your sister agree with you? Could you talk to your father together, not about stopping care, but about getting extra care for your mother through Hospice Care?. Maybe your father would be able to accept it from that aspect? It is such a sad place to be in and you need all the love and support that this site can bring you.

Love Ali B

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If your dad has power of attorney, and it sounds as if he does, and if he wants to continue her life, then I do not believe there is anything else that can be done. However, you may counsel him about palliative sedation (google it) inwhich the patient is put into a comfortable slumber as their organs shut down and move on, (die) . I don't know much about Palliative sedation only that when we brought B home from ICU care for pneumonia , they gave him Morphine which actually helped him breath. He was in a calm, restful state and within a month or so, he passed on.

This was not a method to end his life just not prolong death. His body did what it was going to do ...You might talk to the doctors along with your dad about palliative care...No more prolonging life drugs such as antibiotics etc....

Good luck

((HUGS))

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Thank you to all who have replied so far.

my father does not have medical power of attorney in place, and so I am hoping the doctor will speak with me. I am also optimistic that he will be able to stop the medications based on the fact that, when she had her stroke five years ago, my mother signed a document to say that no extraordinary measures should be used to extend her life. But my father seems to have forgotten her wishes due to the slow progress of her disease which, if she had become overnight the way she is today - would shock him enough to consent to withdrawing all medications - or to omit to administer them to my mother. I have a huge battle to fight, but feel it will be the right thing to do as my mother has no voice now. Love to all and thank you again for your kind wishes and information xxx

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Good luck to you sister in PSP. If I may again emphasize that your sister and maybe even your dad be with you at the meeting. Do you know how your sister feels about end of life plans? And to hear from the doctor the different options to palliative care, may help your dad make a more sound and relaxed (not all caught up in emotion and guilt) decision. At any rate someone needs to have Power of Attorney which may still be open to consideration.....Good luck

Andrea

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Good luck, Mary. You are a loving daughter.

Jean xx

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Such a dilemma and I really don't know what I think the answer is to your question. We discussed Bens wishes fairly early on and the hospice helped to draw up an Advance Care Plan and also had a Power of Attorney for Health drawn up too and so I won't have those decisions to make. That doesn't mean that it will be easy when the time comes, he doesn't want hospitalisation for intravenous antibiotics and this is difficult for me when he has an infection, there will be a time when oral antibiotics, issued by his doctor, won't do the trick and I will be the one who has to say no treatment thankyou. It seems there is no easy way out of this but I do hope your dad can be persuaded to let her go gently without the daily struggle she has to deal with. Sending you a big warm hug.

Kate xxx

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