DH says he won’t honour my wishes re death.

[Chocchops72]

So all this is theoretical as (touch wood) I’m in my 50s and in good health.

i haven’t completely researched this yet, but I am very keen not to have my life extended if I descend into either a debilitating and terminal illness or develop dementia, to the extent where I am bedridden, incontinent, unable to communicate and I want to put in place whatever paperwork I can to ensure this.

DH is refusing to support me in this and says he would not enact it, for two reasons.

one, we watched a Ted talk recently which talked about ‘future selves’ and how people genuinely do change their minds about big decisions / beliefs they have, as they age. So people that have signed an advanced directive, setting out the circumstances where they wish to be allowed to die, may genuinely change their minds about this as they get older. I agree with this to an extent, but I don’t think a decision made when in full control of one’s faculties (ie now) should necessarily overrule a change of heart that might theoretically come once the person has lost the capacity to make a decision. DH has taken it totally at face value though, probably connected to the second reason.

two, his mum is currently in a nursing home. She has Parkinson’s, dementia and severe osteoporosis. She is almost totally immobile, incontinent, cannot speak, communicate or feed herself. She basically lies in a chair or lies in a bed, is fed / washed / toileted, and talked at. Or left in a room with inane cartoons blaring at her. Or being jollied along by nurses / carers. FIL visits daily: he has made these visits the sole focus of his life, his duty / responsibility and expects everyone else to think the same way. If he can’t make it, he insists that SIL (who already visits 2-3 times a week) to take his place, and he calls her every night to ‘update’ her on her mothers (unchanging) condition, which she finds very hard. DH (because we live abroad) get roped into weekly zoom calls, where he basically talks to his dad and sister while his mum sleeps through the whole thing or makes random mumbled comments. Yet because she is cared for she might live in this half-existence for years and years to come.

i have absolutely zero desire to live like this. Or for him and our two DSs to end up caring for me or binding their daily lives to me, or feeling guilty because they don’t. But DH takes it as a great insult when I says this, as if I’m suggesting his mum would be better off dead and that they (FIL and SIL in particular) are stupid for making her so much the focus of their lives.

My experience of MILs situation is that the spouse generally gets asked what the patients wishes are, and I don’t know if medical staff would go actively against the wishes of a spouse. Even if they didn’t match what the patient has written down previously.

what do you think? AIBU to expect DH to enact my stated wishes, even if they don’t accord with his beliefs?

I thought the Liverpool Care Pathway was discredited and discontinued a decade ago.

@saraclara Hiya, in practice you will be asked but legally it was not your choice. A law called the Mental Capacity Act applies and in this case it was ultimately the decision of the doctor to decide what was in your mum's best interests. However the law says to decide this they should ask for family opinions and ask what the person would have wanted. Generally doctors will follow this view unless they think it is significantly at odds with the caring thing to do. If you actually have PoA it essentially becomes your decision from a legal point of view rather than it being the doctors decision guided by you. Understandably when people are having difficult discussions about a loved ones health they don't necessarily discuss who legally gets the final say but sometimes the Dr and the family don't agree and then you can end up in court.

I see your point. However you are a healthy 50 year old! I think to live in the present and enjoy every moment. My dear friend died recently in her late 50s. Its a long time away and your dh doesn't want to think about it understandably so

this is a misconception, dr's can and do withdraw food and fluids from people.

You picked totally the wrong time to discuss this with him.

I don't think you're being the least unkind about DH's mum, OP. My husband's mother had a lingering decline too, and we had lots of conversations about her quality of life and what we would want for ourselves. It's perfectly acceptable to have these kinds of adult conversations and there's no need for anyone to be offended.

Everyone is healthy, until they suddenly aren’t, though. That change from healthy to unhealthy can happen within minutes, seconds even.

a lot of responses, I am reading them all.

DH and I have had 1 conversation about this, and I take it on board that it was insensitive to push him to agree. I won't be revisiting this with him for a long time.

MIL has been in nursing home for 4 years now, diagnosed 5-6 years ago. She's had antibiotics for chest infections twice recently and AFAIK there is no DNR: I can't imagine FIL agreeing to that. If there is then it has been done without his knowledge / agreement / understanding. I haven't raised this with DH: I have no idea how he, SIL and FIL will go if she gets seriously ill and the subject is raised by medical staff because none of them will talk about it.

A pp said that I think their family has done it 'wrong': that stung, because it's true. PIL refused to talk about any aspect of the future - ageing, wills, POS, care, wishes about funerals, anything. When MIL was diagnosed, FIL initially went into denial about it, then proved to be not good at caring for her at home (which he insisted should happen). She was frequently not clean, as she couldn't clean herself after using the toilet or in the shower, she didn't eat or drink enough so was often dehydrated and getting constant UTIs, she wasn't taking her meds properly (and that likely had an impact on the rapid progression of both her osteoporosis and her Parkinson's) because he didn't supervise her. He was very unpleasant to DH and SIL when they tried to point these things out. I'm mad about that, and have to get over it I know. He didn't mean any harm, he thought he was doing the right thing.

In my family it's considered totally normal to talk about these things, and to plan - as best we can - for them. I know what my parents views (currently) are about death, illness, care, dying and I check in with them every so often on this. My sister and I have copies of their wills. They proactively set up POAs years ago. They have gradually made changes to their home to allow them to keep living there as they get older. So it's a conversation I've already had with my nearest and dearest, many times over. And I can't have the same conversation with my DH?

this is a misconception, dr's can and do withdraw food and fluids from people

When they're actively dying or in a vegetative/comatose state, yes - but that doesn't apply here and it wouldn't apply if OP was in the same situation.

Someone who is breathing unaided and who can eat and drink without the aid of a tube is keeping themselves alive - doctors can't just decide to withdraw food and water in that scenario 🤷🏻‍♀️

It's definitely something to think about and talk about now whether the DH likes it or now. You never know what's around the corner. The MIL's existence sounds awful and I'd much rather be dead.

@IrisAtwood

My husband was given a terminal cancer diagnosis (ie. 6 months or less), and the consultant told us that if his heart stopped, resuscitation would not be permitted. Actually, we were both quite shocked by this information, given when he spent a few weeks in a hospice for pain control. A separate DNAR had to be done by our GP so that my husband could die peacefully at home, as he wished.

Even though i agree with you, your timing is totally unreasonable. Leave the man alone to process this difficult time without healing l sticking pins in his eyes

Sticking! Not healing.

As you are seeing, family cultures differ wildly when it comes to this topic. Myself and my family would be in your camp, my ex husband and his in the 'let's not talk about anything unpleasant or challenging' camp. I found their attitude baffling and occasionally infuriating when things which should have been been sorted weren't and then it was all wailing and moaning after. I have no easy answers for you but you do NOT have to take his families attitude as the default and are perfectly entitled to have and voice opinions and wishes in relation to yourself at the very least. And that is not being cold or hard but merely sensible in my view.

@Chocchops72 - your DH/next of kin has no legal right to make decisions about your care. This is something that surprises people. Whether an advance directive is legally binding depends on where you live (ie England or Scotland), and whether certain requirements were followed when making the advance directive (living will). But irrespective of the legal side, your wishes will generally be taken into account when decisions are required about your care if you lose capacity - if you are physically very limited but have mental capacity, you maintain your decision making powers.

You might find this webpage helpful: www.stchristophers.org.uk/leaflet/frequently-asked-questions-about-%E2%80%98next-of-kin%E2%80%99-and-power-of-attorney - quote from it "The term next of kin is in common use but a next of kin has no legal powers, rights or responsibilities. In particular, they cannot give consent for providing or withholding any treatment or care." - note this refers to providing and withholding care. Your DH is not automatically your NOK anyway and you can 'appoint' someone else as your NOK, eg a friend.

And for those saying you are "too early" to worry about this - you absolutely are not! I started a thread here a short while back about how dire the care home sector is and I am now in the process of sorting out an advance directive and making sure my wishes are documented in a legally binding way. We have a couple of younger people in the home with life limiting diseases and one 23 year old with a devastating brain injury after falling a fall from a hourse. My family are the same as me though - we all agree that it is quality over quantity of life.

It's not just old age/dementia that can cause you to lose capacity - you could have a stroke, get hit by a car, fall down stairs - if you are concerned about your DH not honouring your wishes, I'd be sorting it out now. Cancer/end of life charities including Macmillan and Marie Curie also have excellent free resources about this - information relevant to people with all diseases and conditions, not just cancer. Also Alzheimers UK etc.

define "actively dying?" ...someone who has had a massive stroke for eg. could quite well continue to live if given IV fluids and NG tube feeds but dr's may decide to not proceed with these options. When I was working in hospitals I have had patients who were still having conversations with me, were NBM and crying out for drinks that dr's have decided not to proceed with fluids etc. Bloody Dr. Shipham's actions resulted in a huge backstep for care at end of life with Dr's reluctant to prescribe adequate pain relief for worry this may end the persons life early even though the person will die through lack of adequate food and fluids. In the case of dementia where often the person develops a chest infection, this isn't going to kill them immediately ( & often I have seen patients who are still being given antibiotics even though they aren't eating/drinking adequately) swallowing becomes compromised , you may give the person "comfort" drinks etc but you aren't going to transfer them to hospital for IV fluids etc. Having worked in hospices there is a huge amount of improvements that need to be made at this phase of life and I agree, write down your wishes, have these discussions with loved ones early on and make sure you talk to your GP and Dr's about your wishes if you are diagnosed with a life limiting condition. Lets stop pussy footing about "sanctity of life" when we fail to care adequately and provide dignity at the end of life for elderly and disabled people.

https://www.mirror.co.uk/news/uk-news/woman-dies-after-carers-stop-29509236

I just read this story, it's not as black and white as you think. As many PPs have pointed out.

@2022again "actively dying" generally means unable to eat, drink and breathe unaided I think.

So if someone found themselves unable to eat and drink without a tube (for example) they could have it set out that they don't want medical intervention beyond palliative care.

But what doctors can't do is withdraw food and drink from someone who is still actively able to do those things themselves - as a general rule anyway.

I'm not saying end of life care in this country is brilliant - because it's not - but that doesn't mean we can just demand doctors and family do whatever we like when the time comes.

It's a lot to ask someone who loves you to end your life. Even if they know that's what you wanted.

I agree you are being unkind about your husband's family.

This is another area of misunderstanding in health care. A DNACPR is a guide/expression of wishes.

If you say "if I become unwell, I want to be resuscitated", the medical team at the time can still decide NOT to resuscitate.

Alternatively, a DNACPR means just that - do not attempt cardio-pulmonary resuscitation. It does not rule out other forms of "resuscitation" such as IV antiobiotics in the event of an infection, or IV fluids/food, blood transfusion, giving oxygen etc.

The main deciding factor is the medical team's opinion of whether you are likely to survive/benefit from it. I saw a young woman once who had been resuscitated in an ambulance twice (ie her heart was restarted with a defibrillator) and was left in a complete vegetative state, it was tragic and her poor family just wished she hadn't survived.

It's not like the movies where they shock you and you come round, happy as larry. Most people do not survive CPR or they survive with organ/brain damage (like the woman I mentioned above). This would be different if it was CPR for say an electric shock in a young, healthy person and they were resuscitated fairly quickly.

But for the majority of cardiac arrests, the person has health issues, is likely to be older and have a degree of organ failure or their brain and organs are starved of oxygen before they are 'successfully' resuscitated.

@coffeecupsandwaxmelts so Stephen Hawkings was "actively dying" throughout the majority of his life??? People think it's far clearer cut then it actually is, in palliative care ,patients ask how long they may have to live and it is surprisingly difficult to predict..some people choose to have every life extending measure possible others decline everything...this is why conversations need to be had.

I'm 71 in good health, and I spend absolutely zero time worrying about things like this. If and when the time comes when I'm facing terminal illness or dementia, I shall research my options, including dignitas or a suitable alternative. No care homes.

I made a thread about the importance of advanced care planning. You could sustain a life changing brain injury tomorrow and lose capacity to make decisions for yourself. There is things they do to keep you going such as build up drinks , artificial hydration, nutrition and antibiotics. You can't ask the state to kill you but you can ask to not have these and be given pain relief only.

If you fell over and randomly had a stroke and lost capacity for example. All your wishes would can overridden if it's not written down by family and medical staff.

This sort of sensationalising really annoys me. People are not 'starved' to death. What happens is the person loses their ability to swallow either mechanically or they aspirate (fluid then enters the lungs and they drown or get an overwhelming chest infection). Giving IV fluids means a person needs to be in hospital rather than a care home and it is not always possible to get a cannula to remain in a person's vein when they are near the end of life. If someone is at the end of life, IV fluids can hasten their death as their organs are shutting down and can't cope with the fluid.

Many years ago, we used to give patients at the end of life sub-cutaneous fluids ie a small needle into the fat rather than a cannula into the vein. It was categorically proven that these fluids did nothing to hydrate the patient - although it did give them boils at the site where the fluids were going in - but what it did do was make the relatives feel better as their loved one was not 'starving to death'.

What jumps out at me with stories like this is a breakdown in communication and the therapeutic relationship between the family and the care provider. It's very sad as this family will now live with this 'bad death' for the rest of their lives when a good death could possibly have been achieved.