Elderly parent ‘ready to go’ - advice please (in hospital, DNR in place)

[SociableAtWork]

Hello, I lurk on this board and the advice is always so helpful, so I hope someone can help this time.

My 83 year old parent has been taken to hospital this morning with low SATS and being unable to breathe well. They are very frail and have a number of painful, long term health conditions, include a lung condition (not COPD) and complete immobility, relying on the other parent for all their care (which hasn’t been great lately due to their own age/conditions)

Last night their breathing was very laboured and we had thought they might pass away overnight. They wanted to and have been desperate to for a long time. My other parent was prepared for this and I think they might both have agreed not to call an ambulance in the hope this would happen.

Their carer called the ambulance this morning. The SATS are possibly low due to an infection linked to the lung condition. These are frequent - probably monthly now, having increased over time and usually lead to pneumonia.

I know none of you know for sure but if someone is ready, physically and mentally, and just completely exhausted with existing, can the hospital make them ‘comfortable’ so this happens or will they have to try to prolong life?

My parent has a DNR.

Obviously none of us want to lose them, but we hate seeing them in constant pain, depression and struggling to breathe and we know there is no quality of life at all despite best efforts. They’ve remained in their home, have refused a care home and just want to die as peacefully as possible at home (or in hospital). They’re 83.

Thank you for reading.

I'm sorry you are dealing with this. It is so hard. My mum is similar but in a carehome so ahe will be nursed there to the end - no hospital.

Would she consider a hospice rather than home? Or hospice at home. I know availability varies but there should be something in your area.

I’m sorry you are too, it is so hard isn’t it.

She desperately wants to be at home. This has always been very clear for both , to stay in their own home.

Thanks for your reply. I will have a look at hospices locally as they sound better than the hospital.

If your parent has mental capacity, they have the right to refuse treatment for a lung infection or any other kind of medical intervention. Have they completed a Respect form outlining their wishes?

I’m so sorry for you. It’s a very very tough time. I am going to be honest but in the hope that it might help you prepare.

My experience with Dad was in hospital . He had a DNR and said he wanted to go. I found that the Drs were very reluctant to tell me how close he was ( I realise they cant know for sure). Dad started to talk about going home but he never made it. He died in pain . The hospital were very slow to administer pain relief.

I am not saying this will be your experience and I really hope it isn’t , but there are times when people dont just gently drift off into sleep.

@SociableAtWork your Mum can refuse to go into hospital if she'd prefer to stay at home.

Ensure that her pain meds are adequate.

Thinking of you all, it's such an emotional time.🌼

Apologies @SociableAtWork just realised your Mum is already in hospital.

You could have her discharged ama, if she would really prefer to be at home though.

This. My mum was on numerous medications for a variety of chronic conditions. None of them was immediately life threatening, but in her final admission to hospital she made it clear that she wanted all medications and treatment withdrawn. She gradually slipped away over the following five days and we were able to spend that time with her. She had a strong religious faith and it was strangely comforting to us knowing that she had made an active choice.

In my experience, some doctors will follow treatment to the letter of the law. Others are more humane and understanding. It might be wise to discuss your mum's thoughts with the doctor. It is so difficult in these situations.

If you can find a hospice at home service I think that would make a big difference. When my DP was in the last stages of cancer we had a hospice nurse who came overnight. That would take a big load off your other parent. It just gives a feeling of being supported to the other spouse and they obviously deal with any pain control medication. DP was desperate to be at home and this made it so much easier.
It's so hard isn't it.

Hi yes speak to the ward doctor, ask them to liaise with their senior if they are unsure (some junior doctors will be quite new with it being August). Easier if your mum has capacity, or if you hold power or attorney if she doesn’t.
Ask for referral to the hospital palliative care team for symptom management and to help facilitate discharge home if current level of care isn’t sufficient.
Hospital team can liaise with GP regarding no more hospital admissions, whether she would even want oral antibiotics or not etc.
Sounds like a perfectly reasonable and rationale course of action at this stage. All the best.

edit- I am a reasonably senior hospital doctor who helps facilitate this sort of thing regularly

We are just out the other side of a similar situation to yours @SociableAtWork so I’m very sorry for your situation. We experienced similar to @OLDERME

I think in your shoes I would be very strong on advocating for your parents wish for comfort at this stage.

We encountered all sorts of ultimately needless interventions at this stage dependent on the doctors. To be fair to the doctors we had a family member who was strongly in denial somewhat forcing their hands but it was drawn out and in the end needlessly prolonged suffering. It is definitely worth speaking up.

We talked to the palliative care nurse when MIL was very distressed and uncomfortable and clearly deteriorating rapidly. They were very clear they could not sedate for confusion, only for pain. But they did then seem to move to a different level of pain relief so she was calmer and less distressed.

It's definitely worth checking that the staff know she has a DNR and does not want her life prolonged unnecessarily. And telling them every time when she seems to be at unbearable levels of distress/pain/discomfort.

It's such a hard time, much love to you.

“They were very clear they could not sedate for confusion, only for pain.”

We had this too - my 98yr old relative was climbing the walls with hallucinations and dreadfully distressed. But we were told they couldn’t have any thing to calm them as “these drugs are addictive you know” I don’t think addiction should be a big issue at that stage!

I’m sorry you are in this position OP. I think you need to seek out a Dr on the ward - sometimes easier said than done! make your feelings clear that life prolonging treatment isn’t what you want as a family, there may be end of life care options at home but I think it’s very much area dependant. However a good place to start is making them aware you’re realistic about what the future holds and make them aware she’d prefer to be at home. Or you may find a hospice is a better option. If she does make it home, make it clear to the carers that thats where she wants to be and no more ambulance calls, I think they are worried they’ll get in trouble if they don’t so be clear with them that thats the plan. Good luck to you. X

We have been in a similar situation, it's very difficult. Remember that your parent does not have to get into the ambulance and go to hospital if they prefer to remain at home, even if the carer has called one. My MIL refused to get in an ambulance in these circumstances.

District Nurses ( with GP support) perform the majority of end of life care at home. You don't necessarily need Hospice at Home ( but can be referred if needed). I mention this to minimise potential barriers to discharge. Discharge from home with DN & GP support should be available. The Respect form is very helpful to ensure her wishes are known & communicated.

Your parent can refuse antibotics and all medications part from ones which will make them more comfortable. You need to chat with your parents and find out what they can and then get a consultant to talk to them.

Be aware for some patients, I was told especially those with COPD, may last days when for other patients in the same condition may only have hours.

I hope your parents get the outcome they want.

Palliative Care Doctor- do you know what the focus of her care is in hospital?
Although she has a DNACPR the team may do everything they can to save her life short of CPR.
Obviously if she has capacity then they will ask her but it is not uncommon for patients to just go along with what they are being told, or for their relatives to know they are confused but staff who aren't familiar with them not to notice.

I would make speaking to the doctor looking after her your top priority so you can explain she has wanted to die for a long time, she wants to die at home and she has only come into hospital because symptoms weren't controlled at home, not for lifesaving measures.

I'd also ask for a review by the hospital Palliative Care Team.

My late OH had Parkinsons. After falling and breaking his femur, and then having surgery, he became totally physically dependent. And in addition he was paranoid and terrified every minute of every day. Everything had been tried to relieve this with no success.
We all took the very difficult decision for him to go to a nursing home ... a very expensive one that involved me selling my home to pay for it.
One day when I went in he clearly had an infection and the home had called the doc who planned to blue light him to hospital.
I said ... just hold on a minute ... what life are we dragging him back to from the brink? What are we doing here?
I insisted he should stay where he was and not be treated. No-one batted an eyelid and immediately ordered in a pack of meds for providing him with a peaceful passing.
The critical factor here was that I had power of attorney, although no-one actually asked to see the documents.
I had nothing but sensitive support from everyone.
The professionals were very clear that I had made the right decision and helped me in every possible way. Several said they would have made the same decision for their loved one.
I hope you can find a way to ease your mother's passing. Sending a hand hold.

@Mischance . You absolutely made the right call I’m sure. But it’s so unfair that not everyone gets the same support from the medical profession in similar circumstances

I’m so sorry you are going through this. Our mum (ex nurse and midwife) was cared for at home by us (daughters). She had made it clear she did not want to go into hospital. About a week before the end we had the hospice from home team. They were amazing. We were so grateful for their care and respect to our mum. It was an unbearably heartbreaking time. I send you a huge hug from a stranger and wish you all peace.

We had hospice at home who were wonderful. Mum’s GP visited and took all her medication away with him. Mum was ready to go, strong in her faith, and these wonderful people made it possible for her to die quietly at home in a comfortable hospital bed, looking out at her garden. My sister and I have just made a considerable donation to St Christopher’s so that this service continues.

Do you or someone in the family have power of attorney for health and welfare?

Thank you all for your kind words, advice and understanding. I’m sorry not to reply sooner but was at the hospital.

She is very poorly indeed and we have all spoken together and with the Drs/nurses looking after her to express our wishes - she has confirmed she is ready to go, and has capacity. The care and understanding shown has been so good.

I feel the Drs have been very transparent and we all understand it is simply a matter of time now (a short time). She is not well enough to transfer to home unfortunately, but does have a lovely private room. She is comfortable and they will continue to ensure she remains comfortable.

Again, thank you so much for replying. I have taken a lot of comfort from your kindness and found the advice invaluable, knowing how to speak frankly with Drs etc. has made a huge difference.

You're in my thoughts @SociableAtWork

I hope her passing is peaceful. I am so pleased you now have agreement with the medics and you are all working towards the same aim.