Writing a statement of wishes in case you get really ill

[Garysmum]

Read a thread on here where it was stated that certain people won’t be considered for aggressive treatment if they get seriously ill as their conditions mean it’s unlikely to be successful,
It made me think. I’m CV due to moderate asthma and being on immune suppressants for auto immune disease. If anyone just reviewed my drug list I expect they’d leave me to die.
But in the last 3 years, I’ve improved my asthma to the point of only using a preventative or inhaler in winter and I’ve got fit. I have low blood pressure, low cholesterol, low resting heart rate. I do 12 hours exercise a week and am very fit for mid 40s. I’m very fit full stop.
I was thinking about writing a letter of wishes as I want aggressive treatment if I get very ill. Im happy to provide my heart rate stats and exercise stats for a year. Whatever it takes.
Has anyone else had this thought?

@RoyalFamilyFan I couldn’t bear someone’s children to be left without a mum or dad if it came down to making a choice of who to treat. (At that point the news was full of people dying in corridors.)

@Judystilldreamsofhorses but you matter too

@Innocenta

I think you should do it. I'm CEV and during the really difficult part of 2020, all of my close family (including both my elderly and CV parents) went through the challenging process of doing this. It is upsetting to think about, but a relief to put your wishes in writing. Specifying your NOK and who should be making the decisions (in order), is also potentially helpful. We also specified the point at which we'd want care to be withdrawn, to help the family if it did reach that point.

It may be a bit taboo to say so, but doctors are human too and clinical decision making absolutely is swayed by human factors.

NOK has no legal meaning in terms of medical decision making. It’s simply a preference of who to share information with. A person with non complex needs of OP’s age does not need a statement to say they wish to be treated. If they wish not to be treated, they need to ensure they have a legally binding Advanced Decision.

Wow what a depressing thread….! I am 41 and in the clinically extremely vulnerable group- multiple disabilities and take 22 medications a day including steroids and immunosuppressive medication; I haven’t even considered doing any sort of statement of wishes. I think I have faith that a) the vaccines give a good amount of protection so that I’m unlikely to end up being seriously unwell and b) that if I did end up in hospital they’d base their decisions on how I present at that time, what my chances were and my current stats. I think it’s quite overly anxious to be thinking otherwise.

This thread actually makes me me quite angry. You would be amazed OP if you saw how badly in pain and without dignity people with progressing incurable terminal illnesses are and still expected to endure invasive and painful treatments to prolong their lifespan regardless of quality because others around them are squeamish about death. In a few years time this is what you really have to fear.

@SinisterBumFacedCat perhaps that is true. But I have seen relatives choose painful and difficult treatment to prolong their life when their loved ones would find it easier if they didn't.

@Mickarooni I didn't claim it was legally binding.

@Bagelsandbrie I don't consider it particularly anxious. If anything, I wish I'd done it before Covid - Covid was just what prompted me to get it sorted. Anything can happen out of nowhere and I'd prefer to know what my family members want if a crisis should arise.

(Speaking as a very high risk CEV patient.)

This such a personal issue though. I lost both my parents. They had very different attitudes to death. Parent 1 was ready to go but parent two would have given anything for extra weeks, months or years.
Parent 2s death hit everyone so much harder.
For my part I also worry about assumptions of my physical condition if I become very unwell for whatever reason as I have a few minor medical conditions, am obese and also the wrong side of 50. None of my conditions are obesity related and I am no couch potato. Not such an issue now but maybe 10 years down the line.

I agree. But by blinding looking at someone's medication list - they might miss something. In my case, you might imagine someone with auto immune disease sits on the sofa all day.

Why on earth would anyone think that? Many people with auto immune diseases lead relatively normal, active lives.

I accept if it's a case of me or a 20 year old, the 20 year old trumps the 40 year old. But what if you have 2 40 year olds.... then you get into top trumps of health conditions.

Nope. Age is not the only factor that is considered. What is taken into consideration is the likelihood of success and the impact the treatment will have on other medical conditions. A 20-year-old with terminal cancer will have less chance of success than an active 70-year-old in good health.

Everyone who has experienced NHS care for an elderly, physically disabled or mentally ill person, either yourself or a relative or friend, will have observed how they are 'treated'. Definitely write your letter OP. They'll ignore it at will, but try.

I worked on a Covid ward that had a blanket DNR policy during Lockdown 1 for about 2 weeks.

Think about resuscitation. A person who is dead, their heart has stopped. They would have Covid. In March 2020 we knew relatively little about it except that it was infectious. The team only worked with level 1 PPE on. They would need to get level 2 PPE on, by which time the dead person would probably be past the small chance of recovery from their heart stopping (resuscitation doesn't often work). You're then asking the entire team to deliberately create the most infectious scenario possible - close contact while pumping air in and out of someone - for a tiny chance that someone's heart might restart. If by some miracle it did, they would also have a new permanent hypoxic brain injury and probably permanent damage to the heart, plus broken bones, on top of Covid.

That's why a blanket DNR policy existed for a short period in one ward that I was on. It was rescinded and has never been done again. I'm not aware of a single person who was actually affected by it, and nobody was 'left to die'.

In a nutshell you seem to be saying:

‘I’m fit, I’m young, don’t lump me in with all the others with the same ore-existing condition as me.
They are not as fit and active as me.
Make me a priority patient and throw everything at me because I KNOW will get better (unlike the ones you give up on)’

Do you think the ICU doctors just write people off?
You can write your wish list but I don’t think it will make any difference to the treatment you receive.
It sounds as useful as a birth plan.

@NinaDefoe

In a nutshell you seem to be saying:

‘I’m fit, I’m young, don’t lump me in with all the others with the same ore-existing condition as me.
They are not as fit and active as me.
Make me a priority patient and throw everything at me because I KNOW will get better (unlike the ones you give up on)’

Do you think the ICU doctors just write people off?
You can write your wish list but I don’t think it will make any difference to the treatment you receive.
It sounds as useful as a birth plan.

That's not what she's saying at all.

@PermanentTemporary was that a geris ward? I'd be so surprised to hear of a blanket DNAR on a medical ward with younger patients (

Just to add OP - It the classic fight or flight instinct. Maybe you’re scared and are in fight mode. That’s normal.

That's not what she's saying at all.

I think it is.

It made me think. I’m CV due to moderate asthma and being on immune suppressants for auto immune disease. If anyone just reviewed my drug list I expect they’d leave me to die.
But in the last 3 years, I’ve improved my asthma to the point of only using a preventative or inhaler in winter and I’ve got fit. I have low blood pressure, low cholesterol, low resting heart rate. I do 12 hours exercise a week and am very fit for mid 40s. I’m very fit full stop.
I was thinking about writing a letter of wishes as I want aggressive treatment if I get very ill. Im happy to provide my heart rate stats and exercise stats for a year. Whatever it takes.

@Innocenta it was a Covid ward. The post was trying to explain that it wasn't about the characteristics of the patients.

@NinaDefoe You're not reading her post in good faith, then.

@PermanentTemporary Yes, I read your post. Is it possible for you to say anything about the take or would it be identifying? Obviously I wouldn't ask you to share anything you can't! I'm just saying I'd find it very surprising for a ward that takes, say, a 25 year old, to have that policy. If the ward was taking older or frailer patients (ie already streamed as 'for ward based care' and no escalation to ITU) then it makes more sense logically, although still potentially very distressing. I appreciate you may just not be able to talk about work at this level of detail!

No. When Covid first hit I read a couple of threads like this. All they did was heighten the sense of fear, panic and irrationality in people.

The talk of bodies piling up in the streets, people left to die, this narrative was leapt on by some scaremongers.

@OriginalM

I wouldn't have thought this was necessary but then hearing about DNR being put on healthy disabled peoples notes when they have covid makes me think otherwise. How this was allowed and forgotten about so quickly makes me feel sick.

This was done to my 80yo grandad who was fighting fit and completely independent before he got covid. We were furious. Thank goodness he recovered.

@Innocenta

“Specifying your NOK and who should be making the decisions (in order), is also potentially helpful.”

The only people who make decisions are the doctors and lasting power of attorneys or deputies for health and welfare. Statement of wishes don’t mean anything.

@LindaEllen

Regardless of being fit and healthy, CPR on an 80 year old is brutal and unfortunately, unlikely to work. The trouble is, people think DNACPR means strong and healthy people won’t get treatment. It simply means that cracking their ribs is considered not an option.

@Mickarooni If you think that family and interpersonal pressure doesn't have some effect in real-world situations, you're being a bit naive. Many doctors are upfront about this in venues where they can speak relatively anonymously.

Get a grip.

You are mid 40s with some common and moderate health issues. You are not going to be left to die.