I'm currently filling out lasting Power of Attorney forms for my mother, who suffers from Progressive Supranuclear Palsy (PSP). Her disease is degenerative but she is mentally capable and aware of everything going on.
She has strong opinions on her wishes in her last days - not to be kept alive if she is in a vegetative state, wants treatments that make her comfortable, that won't prolong her life, and that she would prefer to die at home. The LPA forms are quite good at suggesting a range of situations to consider so we have put down her wishes for every situation they have suggested in the forms.
However it's tricky to think of whether there are any more situations regarding her health or situations that might arise in her last days where she isn't capable of making a decision that we should plan together on the form in advance. Difficult to predict when you have no idea what could happen! I've been scouring the internet for ideas but haven't found much, and haven't had much help from our GP either.
I just want to make sure that we've covered all the situations that my mum is likely to have an opinion on, as I would hate to make the wrong decision if it came to it.
So I was looking whether someone has any recommendations for any other situations to do with her health that we should be considering and should have covered in the LPA?
Thanks very much in advance
EDIT: Thought it might be useful to include the kinds of things we have already covered:
Preferences on:
- Treatments that involve blood products
- Being prescribed medicine, painkillers and antibiotics
- Dying at home
- Going into residential care
- In last days, treatments to make her comfortable
- In last days, treatments that prolong her life
- Life-sustaining treatment if in persistent vegetative state
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Hi. I know that it is very difficult to think of everything but it is so good that you are able to discuss it with her. My husband did not want a PEG fitted [to be fed through a tube] so we put that in as several friends have done too. He also did not want to be taken into hospital for IV antibiotics if he had got to the stage where he was bedbound. I am sure others may have other suggestions. Don't forget to complete the financial one too as this was very helpful once he was unable to use the telephone or write. I hope these will help. Good luck. Keep safe. All the best AliBee x
In addition to LPA my husband completed an Advanced Directive of refusal of treatment (ADRT) with his Palliative Care consultant. This was undertaken several years after completing the LPA and gave more specifics. It included a DNR - do not resuscitate, no IIV antibiotics, no artificial ventilation. The ADRT compliments the LPA by adding additional detail and was shared with his care team.
Access to a Palliative Care consultant is often via your local Hospice - who have a wealth of experience in this area. Ask your GP to refer
It’s so good that you are having this extensive discussion while you can. Would be good to consider specifics on: CPR, feeding tube if she can no longer swallow or keep up with nutritional needs, ventilator, dialysis, IV vs oral antibiotics, and whether she wants to donate her brain after death for research, or have an autopsy. Also would be good to clarify, what if she is not thought to be in her last days with respect to PSP, but she is unable to communicate at the time, would the instructions be different? For example if she were in an serious accident or got severe pneumonia in her current state of functioning would she want more aggressive treatment? Just so you know her wishes. People with PSP can lose their ability to communicate well before they are close to death so it’s important to have a good idea of her wishes for medical care generally and not just at the end of life.
Hello thereWe also completed an Advanced Directive of refusal of treatment (ADRT) with the help of our GP who was very supportive. The form initially had been left with us by a member of the community care team. We completed this and it was kept in an orange folder and accessible to paramedics when they came (due to numerous falls). This also included a DNAR (Do not attempt resuscitation). Our Dr reviewed this in September 2019 and it was updated and signed off by him then. With his support and that from the Distict nurses and carers we were able to fulfill Chris' wishes that he die at home.
Thank you all! This has been more than helpful, much appreciated.
We are also doing the financial and property LPA but that one was somehow much more straightforward haha. Thanks again for the brilliant advice, will be discussing these points with mum and the ADRT also sounds like something we need to make sure is in place.
Wishing all the best to you all and your families x
Good that you're doing the LPAs, the website is very good. I would caution against being too prescriptive on the LPA as you may need it to cover scenarios you can't think of now. Try and use terms such as "I would like/prefer" rather than "must" because it allows medical leeway especially in emergencies. Of course, the more you discuss it too, the better understanding of your mother's wishes so you can relay to medical staff.
As the others have mentioned an ADRT can be more prescriptive too. I helped my mother with her wishes too. The advantage of these red folders are that they are immediately available to all medical staff who might need them.
You might also wish to make certified copies of the LPAs when completed. The DWP tell you clearly how to. I copied my mother's ones, then on a word document typed the necessary wording in the bottom right hand corner then put the copy through the printer again rather than write out a long sentence 50 times!
HiAgree with all the comments previously made. We didn't make a health LPA, which I regret but we did have an ADRT which was kept to hand with the DNR and was respected.
One thing I'm not sure has been covered is rehydration - if this needs to be done intravenously it has to be done in hospital. Mum very definitely wanted to die at home, so when her swallow stopped the ADRT came into use and she was given pallitive care at home for the last few days. It was a very special, peaceful time, Mum was treated with great dignity & respect throughout and I am so very glad I was able to support her to die at home, it continues to give me great comfort that those last few days were spent in familiar surroundings with familiar well liked carers & Community Matron. Hard though these discussions are, you will be glad you have had them & if any situation does occur that you haven't covered I think you will feel confident to speak for your Mum, because of all the other scenarios you have covered.
Hi. I work at a Solicitors and deal with both kinds of LPA's daily. If you want to give me your e-mail I could send you a copy of the sheet we sent out to client's with various things to consider.
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