End of life care 😢

[Summer259]

My partner’s mother was taken to hospital with extreme anaemia. She refused a blood transfusion multiple times due to being a Jehovah’s Witness. I saw her tell the doctor and this was confirmed multiple times with various family members as the doctors wanted to cover their back.

I even spoke to her on Monday and chatted. She has been experiencing bleeding due to steroid and naproxen medication. They did an endoscopy and since then she has lost her energy and just sleeping and not talking.

They found she has a stomach ulcer and said she had sepsis. The Jehovahs Witnesses health committee recommended Erythropoietin a blood alternative as she has been having iron infusions but this Erythropoietin was given 3 days ago. The JW Health Committee were only able to get involved on Monday when the mother was still coherent as the mother finally agreed to them making suggestions to the doctor.

People have said he is improving but not the medics wanted to put her on end of life care. Why let someone die if they are improving? I wish someone thing was done sooner as the doctors did a blood test 6 weeks ago and this was never mentioned about severe iron deficiency and I don’t know if she has iron medication.

The family are saying give her another few days but the doctors are trying to get a registrar down now. I am so upset. I don’t know what should happen in a situation like this and if they should do end of life care.

Unfortunately just because shes improving doesnt mean she will recover. People often fluctuate.

End of life care also doesnt mean they are doing anything active to end her life it just means she will be assessed for symptoms and given medication to ease those symptoms if needed.

This must be very hard. I understand your wish to have her with you as long as possible. However sometimes we do not prolong life but extend dying. I hope you have lots more quality time with her.

End of life care simply means they'll keep her as comfortable as they can within the parameters that she and the JWs allow. This is her decision, it's heart breaking for you but you have to stick by her wishes.

I'm sorry that this is happening, take care of yourself.

It is hard to watch a loved one seriously unwell or terminally ill. However, I agree with a PP- sometimes intervening too much or for too long simply prolongs a patient’s death rather than extending their life. It is futile and the danger is that doing this comes with additional suffering and indignity for the patient, rather than a swifter but more peaceful death. Just because we can keep investigating or giving invasive treatment, does not mean we should do it. It’s hard for families, who of course want to do the best for their relatives. No-one wants to “give up” too early or lose their loved one, but accepting that there is no more to be done is not giving up, it’s often the kindest thing for someone. It is a really difficult time, though, and you have my sympathies.

As a doctor myself, I am absolutely sure the clinical team caring for her will be focussed on doing the best for her, and in this case that sounds like it is keeping her comfortable/symptoms as well controlled as possible because they cannot cure her.

You say “people say she is improving but not the medics”- who are “the people”? If it is family or friends seeing an improvement, but the medical staff think she is at end of life, then I think the clinicians probably have a better idea of the clinical picture. Sometimes patients can improve with treatment, but will not recover- for example, antibiotics slow down deterioration but not resolving an infection- eventually they will stop doing even that but initially can appear as though there is an improvement to the untrained eye. It is not unusual for patients at the end of life to rally a bit, before declining again- it is a recognised pattern. Additionally, sometimes loved ones see an improvement because they desperately wish it to be true, rather than because it is.

I think the best thing to do is ask to speak to the senior registrar or consultant responsible for your relatives care, ask them to explain what the care plan is, and why. Once you understand why they have come to this decision, it may be easier to accept. If you think they are wrong, you can ask for a second opinion, though I would be sure you genuinely think they are wrong, rather than just wanting them to be. I wish you all the best.

Unfortunately things happen very quickly with sepsis, and surgery for the ulcer probably isn’t possible if she’s unable to receive blood transfusions. It limits their ability to treat as aggressively as they might otherwise. Iron infusions do take time to work unfortunately. When my mum had severe anaemia she received several litres of blood - she had iron infusions a couple of years later when her anaemia wasn’t as severe but it took a lot longer for her blood count to get back to the normal range, it can take weeks. End of life care is ensuring she’s comfortable.

People have said he is improving but not the medics wanted to put her on end of life care. Why let someone die if they are improving?

Who are these people saying she is improving? Are they staff members? Family?

How old is she OP?

What was her health before she taken into hospital?

She is at end of life now and will receive excellent care. It seems that the care plan is good. It's an incredibly difficult time for close relatives and I understand.

My mother refused intravenous antibiotics for an infection of unknown origin - basically her body was shutting down.

Her end of life was as peaceful as we could have hoped for.

Take care xx

I think it is a family saying about improvement but as people have said the medical professionals would know if she was.

She is 79. Her health was not great as she had diabetes, polymyalgia and anaemia. She had run out of iron tablets but we don’t know why the doctors had not prescribed more. I didn’t know she was still badly anaemia as the paramedics took her to hospital last year with an overnight stay so we assumed the doctors were sorting the anaemia.

She didn’t eat healthy food and would eat chocolate, sandwiches and pastries which certainly did not help. She likes to drink coke and would not drink water.

Thank you all for your helpful replies. It’s a difficult and sad time but your replies have helped me understand the process.

How is she today OP?

It sounds like she has an awful lot going on and it may be that she is coming to the end.

Thank you for asking.

My partner is not going today and having a break as he has not slept much the last few days. Though he said some family will be going so they will update us. I suppose doctors have seen these situations many times to make this decision.

Please keep us updated xx xx

She passed away an hour ago. I am so upset, this was all avoidable 💔😭

I'm so sorry for your loss.

I lost my mum 4 months ago to a stroke. She had multiple health problems and was becoming increasingly frail. She was pushing nurses and doctors away trying to help her when she was first brought into hospital. It was obvious to me it was her time to go and this was her wish too. All I could do if advocate her wishes for her and ensure she was comfortable. It's sad.

Sadly it will come to all of us at some point. She was surrounded by loved ones and they were able to say goodbye. She sounds quite a character. I am sorry for your loss.

Sorry for your loss xx

I am sorry @Summer259