Looking for an NHS advance decision form to use alongside a Health and Welfare LPA

[LPAmadness]

I am currently trying to make an LPA for Health & Welfare.

It has been suggested to me that I leave the Preferences and Instruction sections of the LPA blank and make an Advanced Decision to sit alongside it. The Advanced Decision being more legally binding.

However, I have searched the Internet and cannot find an NHS Advanced Decision / Directive document anywhere.

Has anyone used the NHS document and know where I can find it?

There are a number of other AD documents from people like McMillan etc, but none are very thorough and I am not sure what legal weight they would carry.

It feels slightly strange to me that with an aging population the NHS is not making it easy for people like me to provide clear information as to when I do and don’t want life saving or prolonging treatment.

Wales ADRT e-Form v1.pdf https://share.google/fxGNdgeFCHDOSoAtV

NHS Wales seems to have a template

Hospitals use ReSPECT forms to record the decisions made in consultation with a doctor. But an Advance Decision can be written on any piece of paper as long as it is witnessed. The bigger issue is how you make sure the people who need to be aware of it are aware of it at the time that these decisions are in question. Furthermore, you need to make sure that you've considered all the circumstances which may arise. For example, if you've said 'no CPR', does that apply if you have a reversible cause of cardiac arrest, such as a high potassium level? There are so many situations with nuances.

Any form that you complete would be valid so long as it complies with the Mental Capacity Act requirements. The Alzheimers Society has a template. You can add to it if you need more space - the most important part is to specify in exactly what circumstances you would be refusing treatment (e.g. advanced dementia, acquired brain injury where you were never going to regain capacity etc) and what treatment you would be refusing (life saving treatment/ antibiotics / all treatment save for palliative care).

There is an academic called Celia Kitzinger who does a lot of work on promoting open justice in the court of protection and also writes about advance decisions... she gives an explanation and helpful links here:

http://www.welovepolly.org/celias_advance_decision.pdf

an awful lot of advanced decisions are really not at all useful (they often don't cover the specific scenario or are so specific they don't make sense). As per pp ReSPECT forms are common and can be much more helpful. Whatever you decide to use, make sure you've had advice from a doctor/HCP.

Thank you @Changeisstillpossible. I have downloaded that.

I have also looked at the ReSpect forms @Greybeardy but feel they are quite light weight. I will be seeing my GP next week and will ask for her recommendations.

@Ophy83 thank you for sharing that. It is really powerful and I suspect I will use some of it if I go down the route of writing my own AD.

they're not at all 'light-weight' - we use them widely in hospital/hospices/primary care. They're easily shared between hospital/primary care etc. You need to know how to document things (and what the real implications of those decisions are) to make it useful though (same with any other form of AD) and that's why it's important to involve an HCP.

In Wales we have templates - not sure on England though if that’s where you are

https://performanceandimprovement.nhs.wales/our-work/peolc/professionals/future-care-planning/

My worry with advance decisions is that the law of unintended consequences comes into play. People often can't foresee situations which may arise. Doctors can't guarantee outcomes.

ReSPECT forms are useful because they allow more accurate conversations to take place. The reality is that at one end of the scale is 'Life at all costs' and at the other is 'No intervention at all', and most people will want something in between. Most people will want to be the best outcome with the least suffering and the least life-altering consequences. Doctors can talk through the likely results of different interventions based on the patient's circumstances.

My desire @Lougle is to somehow avoid the ‘life at all costs’ scenario when it comes to me.

Unfortunately I am very close to someone who was treated in that way, with a disastrous long term outcome,

I come from a family of medics and would never criticise Doctors, They have to make difficult decisions, often in a very short space of time. I just want to try and ensure that when my quality of life is gone I am not left lying in a bed or propped up in a chair for years not knowing anyone around me or understanding what is going on.

Ok, that makes sense. So really, you need to define what 'quality of life is gone' means (very subjective!), then frame your statement of your decisions around that. It isn't all that simple. For example, in the news there was a young woman who had been very active and then became paraplegic. She decided that she had no quality of life left so went to a clinic in Switzerland.

Once you've decided what constitutes no quality of life, you'd need to think about all the treatments that may be offered and in what circumstances you'd want them or would want them to be withheld. Life sustaining treatment can include simple hydration, blood products, antibiotics, diuretics, dialysis, oxygen, high flow oxygen, CPAP, BiPAP, ventilation, tracheostomy, artificial feeding, etc., etc.

I think this is why it's really useful to talk over your thoughts with a medical professional, so you actually get a useful document.

Advance care plan documents and ReSPECT forms are very good, but not legally binding. An advance decision to refuse treatment (ADRT) is.

It does not need to be a formal template you complete, but it does need to be specific about what treatments you would not want in certain situations. It also needs to contain certain words and phrases, and to be signed by a witness.

Macmillan has some examples of this on their website https://www.macmillan.org.uk/cancer-information-and-support/treatment/if-you-have-an-advanced-cancer/advance-care-planning/advance-decision-to-refuse-treatment

I’d recommend seeking advice from the charity Compassion in Dying. They have lots of good resources and a helpline