AIBU to expect my family to respect my medical wishes? WARNING: sensitive topic about refusing life saving treatment

[MGrulesmylife]

I have an uncontrolled neuromuscular disease. The mortality rate is usually very low but I am unfortunate in not responding to treatment very well and also being severely affected in terms of breathing. I’ve spent a lot of time and money chasing the best treatments, both conventional and alternative. I’m under one of the top UK neurologists for my condition.

I’ve gone from breathing crisis to breathing crisis which means prolonged time on a ventilator. Historically, I’ve bounced back from respiratory failure but last time, I had complications and I’ve not been the same since in terms of physical ability.

I made a decision to write an advanced decision (a living will) to refuse ventilation. My family refuse to accept this which I do understand. My parents have told me they’d fight it and do not support me. I know it’s coming from a place of love. It’s not totally inevitable that I’ll deteriorate but it is possible. I am still actively seeking healthcare and I’m having regular hospital treatment. I am not suicidal, just clear that the mental and physical trauma of a ventilator is not what I want.

I’ve had regular psychotherapy since diagnosis and have a great relationship with my therapist. I also had a short course of CBT after my last ICU admission as I was so traumatised.

I have no children and a small family and even smaller group of friends. I don’t expect people to understand my decision or agree with it but I would like them to respect my decision is final.

I'm so sorry you are having to experience such a time. I feel ultimately it should be your choice, and if you are over 18 and of sound mind (which you clearly are) then the healthcare professionals will have to abide by your wishes.

It is unfortunate that your family do not agree, but as you said it comes from a place of love. Love can cloud our judgement.

Sometimes writing your feelings and thought can be more helpful to get your point across. Why don't you try writing a letter to your parents? It will just give them a different perspective.

Sending virtual hugs and prayers.

Yes, of course they should respect your decision. The idea that anyone who loves you would actively fight against your express wishes on this matter is frankly horrific. I'm so sorry you've had to hear that.

I don't have any constructive suggestions but I understand your decision entirely

I am very sorry you are having to go through this and I hope it turns out that the advance decisions is not needed.

It’s understandable that your parents are having a hard time with this. Could someone from your medical team talk to them to help them see this from your point of view? Ultimately they do not have legal rights in this decision, nor can they fight it. Make sure your advance decision is specific, mentions the circumstances under which it applies, states that you are aware of the possible consequences of refusing life sustaining treatment and is signed by you and a witness.

I do understand how difficult this must be for your parents but ultimately they need to support you as it is most difficult for you.

I appreciate the kind words. I know it’s not easy to understand. I think my age makes people feel less inclined to sit by and allow me to die.

My Advanced Decision will be clear, I would only decline ventilation if I were go into crisis. I’d accept other intervention.

I think it’s too difficult for my family to discuss at the moment. I’ll leave it for a few weeks and hope I remain as well as possible over Christmas.

I can understand this being hard for your family, but you are absolutely in the right. I like the idea of writing a letter to explain your decision. Hopefully, given time, your family will start to support you.

Wishing you all the very best

Is your living will quite recent?

My mum had cancer. Was told she had five years to live (at best). She confided that if it came back she was going to refuse all treatment and might need me to persuade family members. I was appalled. But kept my mouth shut and hoped she would change her mind. In fact, gradually I changed mine. I recognised how hard it had been and would be again - my job was to support her in her choices.

But she was my mum - not sure how I'd cope with my child making that same decision but I'd hope I come to the same conclusion.

A letter is a good idea.

Absolutely they should respect your decision but my goodness how hard must that be as a parent?
I think a letter is kind. I think you need to ensure your notes are clear about your ceiling of care.

A really tough decision. Would you accept NIV? I think you need real clarity about what you think is acceptable treatment.

I would speak to your dr/consultant and ask about a TEP (treatment escalation plan) which can specify what treatment you do/don't accept

You are not being unreasonable but then neither are they. It is a lot for them to get their heads around. That being said, it is completely your choice.

I’m sure you’ve thought about how to make sure your wishes are clear and how to limit any potential pitfalls in the right information to the right person at the right time. Could you wear one of the medical identification bracelets to alert staff without your next of kin needing to inform? Apologies if you have it in hand and I really hope that somehow something starts to work so your condition is controlled x

It's your choice and your body and ppl should respect that, you sound very brave and been through alot, you know your body and its limits, I got some one with Huntingtons disease ( I know its not the same thing) but if that person decides that they don't want to be brought back time after time it's thire choice and not mine to make even though it break my heart letting them go, maybe set up some counselling with them it's big discussion you made and they would need to come to terms with your choice in Healthy way and plus it allow to express your wishes in a mutual place with a professional guiding it and give them chance to talk about it.
Just want to send lots of warm hugs to you. Xx

I think this is referred to above in the Treatment Escalation Plan post, but I was looking at my mums hospital notes earlier today and in there at the front is the DNR form in the event she is in that position. It wasn't a surprise to me as it was discussed with me and my DF when she was admitted and as we/she had just arranged her Health and Welfare power of attorney, we knew what her wishes were in that situation. Surely this is something that you can ask the doctors and nurses about when you are there and it's nothing to do with your parents/parents can't over ride your wishes if it gets to that point? I'm assuming you're over 18 of course.

How old are you OP? If you are over 18 they have to respect your wishes.

A very dear friend of mine has cystic fibrosis. As children, she would regularly be in and out of hospital, and I would go visit her, sit and do school work with her etc. We entered our teens, and the decision was made for her to go on the heart and lung transplant list. A few years went by, no transplant. Then we got news from her parents, she didn't WANT a transplant, she had had enough. Her parents were devastated, we all were, but not as much as them.

We're now in our 30s, and although her quality of life is often very poor, she still refuses the transplant. Her parents treasure every moment, and although I doubt they accept her decision, they RESPECT it. I think now her time is very very short.

It will be hard for anyone to accept your decision, but give them time. I'm so sorry to hear you're in this position, I felt I could relate a little without actually being in that position myself. Life is for enjoying, and if your treatment means that you're not, then it's totally up to you to decide what to do. I wish you all the best x

If you have a proper Advance Decision it is legally binding - it must be terrible for your parents but I'm afraid they won't have a say in the matter, assuming you have lost capacity.

A dnacpr is different - it is the recommendation of a healthcare professional but it is not legally binding.

I have not completed my Advanced Decision. I am writing it and have an appointment with a solicitor to ensure I’ve written it correctly.

I’m 29 which my grandma said is “very young indeed” but I know the world and I know my mind. Perhaps I come across as immature because I’ve lost so much of my life to this disease..

I'm so sorry you are going through this OP, but yes, no matter how hard it is for them your family should respect your wishes as long as you are of sound mind and not being forced into the decision you are making.

On a personal note, a few years ago my MIL was diagnosed with Multiple System Atrophy, a disease which causes lesions in the brain, causing different parts of the body to be affected, depending on where the lesion appears (basically kills your brain off, but normally slowly so your body packs in over time.)

MIL had always been a vibrant, active part of the community and all of a sudden her body was rapidly failing. Everything from walking to talking to eating to toileting was affected. When she could barely do anything she had a 'Do not resuscitate' (DNR) put in place.

It was heartbreaking for her friends and family, but us not wanting the DNR was actually selfish on our part, as it would have meant we had her for a few more days or weeks, rather than taking into account her pain and misery and her not wanting to be in that situation anymore. We never told her we didn't like her decision, just supported her. This is what your family should be doing, but I guess they are upset and possibly in shock over your decision. They are thinking about themselves and the fact they will miss you, they need to start putting you first in this instance.

My MIL could barely eat by the end, a spoonful of ice cream a day for the last few days, all her meds were liquid as she hadn't been able to swallow pills for a while. Because of the DNR she couldn't even be put on a drip to feed her and she grew weaker and weaker until she died in her sleep on Boxing Day morning last year. She was on lots of painkillers, but they never really took all the pain away and she felt quite humiliated by not being able to do all the things we take for granted and having someone else sort every bodily function for her, her dignity was taken away from her by the disease. Had we fought to keep her alive for longer we would have been prolonging the pain and humiliation, we would have been selfishly keeping her alive for our own needs and not hers.

You are refusing to go on a ventilator, you are not refusing all treatment so haven't 'given up' (sorry, can't think of a better way to put it, my MIL hadn't given up, there was just nothing that could be done to improve her health), but I can understand you don't want to end up on a ventilator for the rest of your life. Your family might take a long time to come to terms with your decision.

I recommend you have your choices put into place legally so your family can not use the courts to overturn your decision. They will also have to grieve over this decision, could they get some counselling to help them come to terms with it?

OP No you didn't come across as immature at all! I asked your age just to "check" that you were an adult so your parents weren't able to over rule your wishes as they could if you were under 18.