Wanting to put MIL on end of life care? Any drs/ nurses to advise?

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MIL ( eighties) is in hospital. Over the weekend she had a couple of falls. Then on Monday she became unresponsive. 999 said ambulance would be three hours. Then she was having trouble breathing so they came. Once in the hospital they did an x ray and said pneumonia. She was still unresponsive so they did two brain scans which they said didn’t show a stroke. Then yesterday they decided she has had a significant stroke. However last night she started opening her eyes, making sounds and squeezing hands in response to questions. This morning the consultant had told dh they want to move her to end of life care? She’s still passing urine so her organs aren’t shutting down as yet. Should we be resisting this? Ask for treatment to carry on to give her a chance to improve. Any advice very welcome.

They said def not a stroke then decided it was. She is responsive but sounds like some brain damage which may heal. I'd give her some time to see what recovery comes from the stroke before going down the end of life route. Nobody would do that if she was in her 60s.

Its good that you have contacted the stroke charity.

Hi

sorry you are going through this. I would ask the consultant (not the junior docs) to talk to you

I would also ask the ward sister / manager if they have a specialist nurse who works in this area who could talk to you / your family for support and information

the thing is even if their assessment of her chances of recovery are accurate, the important thing is for you to be sure of the whole picture before you make any decisions, as otherwise you will be left with ‘what ifs’

i hope you are able to get the support you require x

My sisters child was deprived of Oxygen at birth, something was missed in a scan. The drs advised discontinuing treatment. Just over a year on she is walking, talking has very mild physical weakness on one side. I would say go with your gut, which seems to be questioning it. They simply do not know 100%

Im sorry, but its cruel to give them water. Wetting their mouth is the best option. Dying people do not need food or water. Organs that are shutting down do not require it, and it can cause discomfort. A dry death is best.

I just want to thank everyone who’s shared their experiences of this sort of thing.it’s so kind of you all to be so thorough and helpful. Can’t reply to everyone individually but I have read all the posts. DH had come home and MIL and had clarified some things with two consultants and it does seem that palliative is the kindest thing for her.

Palliative care is reversible in the rare event that a patient improves. I've seen one person improve whilst on end of life care and so they've been taken off it. I can't speak as to the appropriateness of end of life care for your MIL, but I think it's worth you getting a bit more information on what it involves in your hospital.

Palliative and end of life care is not the cessation of treatment. It’s a change of goal. It’s about achieving the best quality of life for as long as possible. They will feed and hydrate patients for as long as they are comfortable and can tolerate it. It is entirely patient led. It does allow for patients and their families to plan the end of life care. I’ve seen patients who have been under palliative services for years and, just once, palliative services withdrawn when the patient recovered completely, with agreement from the patient and the family.

It sounds like you are unsure of the diagnosis. Speak to her medical team. They won’t give a timescale as this is notoriously difficult to predict but they will know if it’s likely to improve or not.

I would question why the diagnosis was inconsistent. First no stroke then a large stroke? Why did that change?

It is well recognised that strokes due to clots (rather than bleeds) don’t show up on an initial CT, but become apparent on later CTs or MRIs. It is difficult to test someone’s strength if they are in a coma as they can’t try to pull against you.

I remember this with my grandma. She had a debilitating stroke and Mum and Aunt accepted the advice for her to go on to palliative care, but uncle insisted she be treated so she had the pneumonia jab and then spent the next 7 years in a wheelchair in a care home, crying.
Mum and aunt and grandchildren did all the visiting. Uncle and family not so much.

I totally agree with you. I had a frank conversation with my dad’s gp once about what his future looked like-dad was very much about when his time came he was happy to go (although we weren’t at that stage at that time) and the doctor said that some of the “problem” with modern medicine is that quite often people think their relative shouldn’t be “allowed” to die.

A good death is a very special gift.

OP speak to the consultant, I hear what you’re saying about being a bit mistrustful, but consultants don’t generally get anything out of moving someone onto EOL care. I’m sorry you’re going through this, it’s never easy.

Just to update. She actually hung on for 8 days after they withdrew fluids. It was hard for everyone but she did pass relatively peacefully. Very missed though.