Does your parent have an end of life plan?

[Istareatthesky]

My brother just went to a care review at my 87 year old DM's care home. He thought it was just an annual check to see how things were going, check medications etc. He was sat there with the nurse and my mother when she asked what she wanted to happen in the event of her becoming seriously ill and/or collapsing. My DM has very mild dementia and some days can be amazingly lucid. She is in a care home with people with very severe dementia and we often wonder why she is there. She has suffered from depression for many, many years and has been on 20mg of sertraline for a long time (the maximum dose at her age).

I am getting this second hand from my brother but it sounded as though this question came out of the blue and he felt very put on the spot. I'm not sure exactly what my Mum said about it all but we have now been given a hand-written note which says the following:

1. X will be cared for at the nursing home and we will avoid any further hospital admissions.
   

1. If she collapses we will not attempt to resuscitate.
   

1. We will prepare for a natural death in the care home.
   

It looks so blunt written down and I think my brother feels uneasy about it all. I guess it's just to clarify whether we would want interventions to take place or whether we would just want to let her go.

At the moment she seems in good health. Her Type 2 diabetes and depression are managed by drugs, she eats well with a BMI of 24, she chooses not to walk and is now doubly incontinent (although we fear that both of the latter situations are down to a "giving up" rather than a physical problem)

I guess I am just wanting to share this experience and ask whether any of you have had to have this discussion. I suppose it is best to have these discussions before major illness strikes. I don't want her to not be cared for though and am worried we are giving the go-ahead for her not to be treated properly IYSWIM?

[SecretSpy]

It's normal and good practice to discuss it, but it sounds like they didn't maybe bring it up as smoothly as they might have done.

I'm a nurse at a care home.

I will pop back when children asleep later - fire away with any questions.

[joanofarchitrave]

Woah!

I think an end-of-life plan is an excellent idea but the first person who should be thinking about it is your DM! Her wishes are of course paramount. Did the home say what she had said about this?

I don't wonder that your DB felt uncomfortable, it's not something to decide all in a heartbeat (as it were). Even if your DM doesn't have mental capacity to decide on her care (and that's a big question), best interests decisions will need to be made and documented. It sounds like they may be doing this rather too routinely at the nursing home

I would go back to the home with your DB and ask more about discussions that have or have not been had with your DM.

[LadyGardenersQuestionTime]

It is very good practice and a discussion I wish more care homes would do this. But surely this will need more than a handwritten note? If it's your mum's decision and she has capacity to make the decision then her wishes need to be signed by her and witnessed by someone independent. Alternatively a senior clinician (her GP for example) needs to complete a DNAR. I think.

[joanofarchitrave]

By the way, I don't think any of the decisions themselves sound wrong, though you might want to ask specific questions about whether they expect to treat infections with antibiotics as they arise or not.

[SecretSpy]

Having an agreed DNAR (do not attempt resuscitation )order in place should not affect day to day care at all and does not mean no active treatment for illnesses or injuries

If that is her preference and you all agree the Gp will likely sign a form to that effect to stay in her notes. If she lacks the capacity to make the decision then the Gp may still sign if it is felt to be in her best interests and this is usually done after discussion with the family.

Planning for natural death at the home usually means that if she deteriorated and death seems likely then she would be cared for until the end at the home rather than sending her into hospital.

I hope this is helpful but ask away if anything is unclear

[expatinscotland]

Yes, mine do, but they are also in the US where DNR, DNAR, AND, medical POA and Living Wills are common and recognised in courts.

[Istareatthesky]

Thanks all. I need to speak in more detail with my brother and as someone said, make sure my DM's wishes were taken into account in all this. And obviously need to make sure she understood and was given sufficient explanation and time to think about it.

Interestingly she was very poorly last week with a chest infection. My family said she looked awful and they all confided in me afterwards that they thought she might not make it. They called a Dr in who prescribed antibiotics and within 24 hours she was completely chipper. I think that's what's making the decision difficult. Would they have treated her properly if this care plan was in place or would they simply have let her succumb.

SecretSpy thank you for your input too. I think we just need the reassurance that they will do all they can for her unless it is a collapse or heart-attack and resuscitation is required. I think you are right in that it is the way it was done that was slightly clumsy and perhaps not as sensitive as it should have been.

I think I should explain that I live over 600 miles away in a different country so this is all coming to me via phone calls and emails. I hope to get clarification over the next few days.

[Scousadelic]

This is a real minefield as, when people agree to these orders, they often mean they don't want to linger on after intervention rather than slip away peacefully

FWIW my mother is in her 80s and has a DNR order and living will, she has specified 2 of us 3 siblings to supervise this as she feels the 3rd will be too easily swayed to extending her life even if the quality is not what she would wish

[SecretSpy]

I meant to add, the blanket 'avoid hospital admission' bit sounds a little unusual to me.

Some of my patients have this documented, usually where there has been a long history of declining aggressive treatment and where care has always been planned more for keeping them comfortable where an end stage of an illness has been reached. eg where hospital treatment is clearly not in line with their known wishes and not likely to improve quality of life ( eg end stage renal failure, heart failure, metastatic cancer)

if she has no known significant medical problems I would be a bit concerned they could misinterpret that, ie she falls and may have a broken hip, or she gets a nasty chest infection which is likely to be reversible.

I would clarify that with the home.

[Istareatthesky]

Yes it is the "avoid hospital admission" bit that jars with me secretspy. As I mentioned she is in basically OK health for her age. We got a nurse friend to look at all her stats (bp, glucose readings etc.) and medication records and she says she's basically got the average health of someone in their 60s. IF she did have cancer that had gone through various stages of treatment and involved repeated hospital stays and we (DM and family) decided that we didn't want that to happen again then I would see the sense of this.

I know it's not what they meant but the phrasing of "we will prepare for a natural death in the care home" sounded like they were going to go away and make preparations for her to die soon!! I know that's not what they meant but the wording was clumsy to say the least.

[SecretSpy]

remember you can change it.

eg actually I have chatted a bit more with Mum and actually she doesn't mind going to hospital if the gp advises it, but we agree that if she has a cardiac arrest then we don't expect resuscitation to be attempted.

and tbf a cardiac arrest outside hospital in an frail 87 yo is extremely unlikely to be reversed.

[joanofarchitrave]

If your DM has said that she no longer wants to be admitted to hospital for any reason, then that's fine - although again I think specifics are quite important. What if she's really struggling to get her breath, and oxygen isn't helping (assuming they can provide oxygen in the care home). What if her pain is not under control at the nursing home?

Most people I think if asked would say they would prefer not to die in hospital. However, in this country most people do die in hospital, because it's quite rare to be absolutely sure before the situation arises that you don't want specialist medical care in any circumstances. I don't think it's a failure of planning for someone to die in hospital, I have to say. It's also pretty scary for carers to be faced with holding the line when someone has symptoms and it's not clear if they're suffering or not. But ultimately this is your MUM's decision, not the nursing home's, and not yours. If your mum doesn't have capacity, then it is in fact the doctor's decision what treatments they are willing to offer, although any good doctor and the law will ask for your input.

[amothersplaceisinthewrong]

My DM who is fighting fit and mentally as sharp as a tack has given me and my sister a copy of her end of life plan, drawn up in consultation with her doctor who also has a copy on her records. We also have power of attorney.

[patothechiefexec]

This is a very good discussion to have. It sounds like your brother wasn't expecting it so it came as a shock.

My 94 year old Grandmother died recently. She had dementia, couldn't walk and was doubly incontinent. My Mother had agreed beforehand that she shouldn't be resuscitated. She developed pneumonia and died peacefully in her sleep at the care home. She had a great death!

Being admitted to hospital can be a frightening and confusing for people with dementia. To be honest, I really would avoid it for your Mum if you can. Her body is already starting to shut down (dementia/incontinence/being unable to walk). She possibly doesn't have too many years ahead of her so your best option is to try and keep her in an environment that is kind, caring, calm and familiar.

[patothechiefexec]

Also, if she is in a good care home the staff will know your Mum far better than staff in a hospital, and yes, everyone wants to die in their own home.