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?

Do you really think you'd be left to die? I would have thought the number 1 factor for healthcare professionals to decide to stop treatment is age. I really can't imagine you being in your 40s you'd be left untreated if you needed treatment. What has made you think this is the case?

There’s absolutely no reason why you wouldn’t be treated for Covid or any other illness.

We are talking about not ICU treatment for the stage 4 lung cancer patient aged 75, not someone like you! Don’t worry.

You won't be left to die....

I doubt this is necessary. I think when they won't attempt aggressive treatment that might be for 80 year olds with heart failure. That's what I imagine anyway. Maybe a medical professional will answer you.

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.

I don't think your conditions would preclude you from aggressive treatment on their own. However in Jan 2021 when there were limited ITU beds then places were prioritised and when there were more patients who required ventilation than there were ventilators then tough choices were made. There were patients who didn't get prioritised who would have been if there'd been more places available.

Doctors assess the patient looking at the whole picture not just a statement on the form. If you come into hospital looking incredibly fit for your age they would take that into account when deciding whether to give you ‘aggressive’ meds. In the same way as they’d look at a very fat person and maybe take a different view of what treatment is likely to succeed.

Writing a statement of wishes won’t have any effect it’s a medical assessment.

Isn’t a statement of wishes what you wrote for after you’ve died? Pretty sure I and DH did this a couple years ago when we updated our wills… says personal stuff and what you’d like at the funeral/massive sending off rave (in my case!)

Clinical decision making is ultimately a balance of multiple factors, patients wishes being just one. Of course write a statement, let your friends and family know your wishes but you need to remember that ultimately no medical team are going to subject any patient to any treatment unless they believe they have a chance of recovery and of living a good life afterwards.
Obviously patients objecting to treatment is a totally different issue and no one should receive care that they don't want so equally think of there are any measures that you wouldn't want taken.
When people are admitted to hospital for any reason a thorough background should be taken to establish what your baseline is as obviously people are more than their conditions/medical history.
I'm genuinely sorry that you feel this is something you even need to think about

My experience (albeit pre Covid) of close relatives with serious illness was that the course of treatment was always discussed with the next of kin before decisions were made. In the case of my DM the doctor specifically asked if she had discussed resuscitation (she hadn't) and what we thought she would want (she wasn't in a position to discuss this herself at the time). The doctors did not implement a DNAR without a full discussion with us first.
With my adult DD the DNAR was implement a couple of years before she died. It was put in place by her GP after full discussion with me as NOK. (Dd lacked capacity). The DNAR was regularly discussed at GP/Consultant appointments and even when DD became seriously ill and was admitted to A&E it was discussed again.

Doctors have a duty to make best interest decisions on patient care. A ventilator is not appropriate for some people and CPR is brutal and likewise not always the best course of action.
It is helpful to tell your NOK what your wishes would be in case of serious illness so they can have an informed discussion with doctors. But a best interest decision will still be made by doctors at the time.

People are prioritised depending on the availability of ICU beds.

If you're really and seriously planning for a scenario where healthcare is rationed to the point they would 'let you die' surely you must realise that writing a letter saying 'please treat me' wouldn't work in that kind of crisis?

@RoyalFamilyFan

People are prioritised depending on the availability of ICU beds.

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. 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. I expect doctors to be able to judge this correctly. But fatigued doctors presented with impossible choices? If they take a medical history etc, then that's all well and good. What happens if you can't talk and you go in alone - the latter being the most likely scenario. My children are my NOK and too young to meaningfully input, hence my desire to advocate for myself by providing a full picture in writing. It's very macabre I appreciate.

@HardbackWriter

If you're really and seriously planning for a scenario where healthcare is rationed to the point they would 'let you die' surely you must realise that writing a letter saying 'please treat me' wouldn't work in that kind of crisis?

Think I mis explained myself. I just want to advocate for myself. I want to be given some treatment, some chance. Posts I have read on here suggest people are already being left to die. If that happens, none of us can have any control over it. But this is my way of taking any control I can against the risk of being taken alone to hospital and not being able to talk etc. I want it recorded (yes there's no bloody purpose to it, is there?)

You’re assuming doctors play top trumps in a very unrealistic way. They’ll look at the entire clinical picture.

People are not being left to die. There was a very serious and unacceptable issue with blanket DNACPR in some care and nursing homes and with a group of individuals who have learning disabilities. As you’re not in this group, it wouldn’t have impacted on you anyway. There is zero indication you’d be at risk of not being treated purely based on your drugs and medical history.

@BlueShirtGirl

Isn’t a statement of wishes what you wrote for after you’ve died? Pretty sure I and DH did this a couple years ago when we updated our wills… says personal stuff and what you’d like at the funeral/massive sending off rave (in my case!)

It’s literally a statement of your wishes in whichever scenario. My father wrote one to attach to his Power of Attorney

Op, I mean this in a nice way but you are really over thinking this. Do you generally have anxiety?
Mild/moderate asthma isn’t a major risk factor in covid. It was initially presumed it would be, as it was a respiratory virus, but it soon became apparent it wasn’t a comorbidity associated with poor outcomes.
Also, some drugs used for autoimmune disorders are actually used in treating covid - so again, not necessarily a risk factor.
Get vaccinated and take reasonable precautions but don’t panic. Please don’t presume anyone is going to write you off and leave you to die- we are a long way from that!

Having worked in acute care and in palliative care I really think you need to clear the worry from your head...theres nothing in your summary about your health conditions that would mean they wouldn't consider aggressive treatment and "leave you to die" . However ,for any of us , if we were admitted to hospital with an acute illness or injury/stroke/brain injury/RTA etc they would assess our chances of recovery from that illness and make clinical decisions accordingly. However, with my palliative care hat on, its always a good idea to write down what our wishes might be and have those open discussions with our family, as our family might be put in a position of having to make choices for us in the event of something catastrophic happening. For eg. I wouldn't want to be kept alive following an event that left me in a persistent vegetative state or needing to be permanently ventilated. My family also knows that I agree with organ donation and what I want to happen to my body after death etc etc . I do agree with you that certain groups of patients can be unfairly assessed and this is what disability campaigners often highlight when laws around assisted dying are being debated....quality of life should be defined by an individuals values and life experiences. If you are elderly, chronically disabled or have a learning disability/mental health issue that may mean people can make presumptions about your qualtiy of life it is important to have the discussions with your healthcare team that state your wishes.(however I really don't put you in that category of patients!!)

The people that are being talked about on the threads are more elderly people probably over 70 at least with health conditions where it would be too much for them and give them a poor outcome not people in their 40s that have what sounds like mild/moderate asthma and auto immune disease

I did this back in April last year, but actually for the opposite reasons. I am in my 40s and childless, and would absolutely hate to be prioritised for treatment over someone who’s a parent.

Think I mis explained myself. I just want to advocate for myself. I want to be given some treatment, some chance.
Posts I have read on here suggest people are already being left to die. If that happens, none of us can have any control over it. But this is my way of taking any control I can against the risk of being taken alone to hospital and not being able to talk etc. I want it recorded (yes there's no bloody purpose to it, is there?)

Where will this be so that, if you were in hospital unable to talk, medical people would actually get to read this?

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.

@BeLessMe We have hard copies and digital copies of our statements. It isn't necessarily needed during a less serious admission - I've been admitted several times since writing mine. But in the event of an admission with Covid, I would take a hard copy.

@Judystilldreamsofhorses

I did this back in April last year, but actually for the opposite reasons. I am in my 40s and childless, and would absolutely hate to be prioritised for treatment over someone who’s a parent.

Do you have low self-esteem? Because it is really not normal to be so self-sacrificing.