He needs blood and lots of it.
July 10, 2018 10:38 PM   Subscribe

Will someone be released from hospital if their gastrointestinal bleeding has not been stopped? I know you are not my doctor or my father's doctor but I don't expect medical advice - just your experience on what will happen next. My father has been in hospital for a week. He had only admitted to feeling 'a bit under the weather' for about a week before he collapsed. There will be more inside...

Once in hospital he turned out to be very anaemic. They gave him blood and did an endoscopy which discovered stomach ulcers, and told us that explained the anaemia and he'd be fine after 3 days of treatment to get rid of the H pylori that caused them. But then he needed another blood transfusion and then another and another. Finally (yesterday) he has admitted he's been losing blood when going to the loo - he outright lied every time they asked about that, and also convincingly lied every time he was asked if he had any stomach pain. I was there. He should have been an actor, he was totally convincing.

Dad was starting to seem confused for months and very confused at times in the weeks before this all blew up. I was afraid he had Alzheimers (he's 83) but he refused to see his doctor. Now I wonder if that was just a side effect of his anaemia because since they gave him blood he seems much sharper mentally. So I am not his carer and maybe he has told the hospital not to tell me anything. He will be coming to my house when he leaves the hospital - which they keep saying 'could be tomorrow'. Clearly he is not ready to live alone yet and I wouldn't want him to! But his release from hospital keeps being delayed because they decide he needs more blood - so he must still be losing quite a lot of blood I suppose? The nurses are busy and don't want to speak to me. What if I bring him home and he collapses again? He is not a big man but he was like a dead weight, my husband and I could not lift him. Surely they have to stop the bleeding before he will be safe to leave? Now that I know what a convincing liar my father can be, I am unable to trust what he tells me about his condition.
posted by tulipwool to Health & Fitness (21 answers total) 1 user marked this as a favorite
Oh, another thing I forgot to add. My father's kidneys are a problem - until very recently the only health problem he would admit to. As far as he has told me, they've been in a slow decline for years and the only thing that can be done is check every few months until it is bad enough for dialysis. I did ask a nurse if the kidneys are involved in dad's current illness and she said there was nothing about his kidneys in his notes. Which seems odd and only makes me wonder if someone round here is still lying to me.
posted by tulipwool at 10:58 PM on July 10, 2018

I don't know about internal bleeding but I do know something about elderly people in the hospital.

Your father should have a case worker or social worker assigned to doing discharge planning. Call the nurses desk to find out who it is and insist on talking to them. If he is being discharged to your care, you have a right to understand what kind of care he will need and offer input on whether you can provide it. Also, in these cases, talk to them about your concern that he isn't stable - maybe he needs to be discharged to skilled nursing to make sure he is stable and recovered enough to be in your home. (This is expensive but may be fully or mostly covered by his insurance)

Also, if he gets to your home and collapses, it is very easy to know what to do - you call 911 and let the paramedics lift him onto gurney and get him to a hospital to be checked out.
posted by metahawk at 11:00 PM on July 10, 2018 [2 favorites]

Ah, sorry - I should also have added that we're British. So insurance isn't a problem. I would have thought anyone assigned to him would have talked to or tried to phone me?
posted by tulipwool at 11:03 PM on July 10, 2018

Contact the head of his team of doctors while he is still in the hospital and detail his lies and his kidney concerns! NOW IS THE TIME TO DO THIS, not after the next health crisis upon his release. Do not accept being brushed off if thst happens, simply proceed and be clear and do not give up until you are understood. Do This.

I speak as someone that needed healthcare advocacy a few years ago when I was in the hospital but did not get it. As the patient, I was a poor judge of my situation. Please please be a loud squeaky wheel until your concerns are addressed.
posted by jbenben at 11:21 PM on July 10, 2018 [8 favorites]

I recently went from a perfectly healthy middle-aged person to someone with severe anemia from internal bleeding needing transfusions in a very short span of time. You are correct it really affects your cognitive abilities. After I was stabilized in hospital I was told to expect four months minimum to recuperate. And that was four months of being incredibly weak with limited functional ability. I imagine it would take longer to recuperate when elderly and dealing with other health concerns. Thank goodness I had my eldest daughter caring for me 24/7 because I most likely would have died while recuperating (no lie) and I simply did not have the cognitive ability to recognize how serious my situation was (go easy on your nefarious assumptions about your father’s “lies”, the cognitive distortion in my case was enormous and I have significant experience in the mental health field). If it has not been explained to you how much care and how long the care will be required of you then I would push back, hard. There are supports in place but you do have to advocate for them, otherwise the unpaid family care is the easy option for the system. It does no one any favours if he is released in assumption of a care level you don’t have the resources to provide. I n’th contacting the social worker and doctor, but follow up every conversation in writing with exactly the resources they have promised you as you most likely will have to rely on those notes when they fail to deliver. Good luck!
posted by saucysault at 11:34 PM on July 10, 2018 [11 favorites]

I would have thought anyone assigned to him would have talked to or tried to phone me?

Based on recent experience of dealing with sick parents & grandparents in NHS hospitals, this isn't necessarily the case. They may not have your details, and I haven't really known hospital social workers to do proactive outreach to family. If his story is changing depending on who he's talking to, that's an added risk that they won't reach out to you (or know to reach out to you).

Ask any nurse or someone at the ward desk if he's been assigned a social worker; if he has, ask to speak to the social worker and they should be able to arrange a time to call or meet with you. They may not be able to give you a lot of information about his condition but it's an opportunity to talk about the plan for discharge and whether your home or anywhere else he might be released to is actually a suitable place for him to go right away if he does get discharged. This is also your opportunity to clarify anything relevant about his medical situation (e.g. bring up the kidney thing; even if they can't tell you anything about his medical status for confidentiality reasons, this is still useful for you to mention to someone). If he hasn't been assigned a social worker, explain that you have concerns about discharge and ask if he can be assigned one.

The other thing I would say is that discharge can take a surprisingly long time, especially when it's an elderly person with complex or shifting medical needs ("we're going to discharge him soon - wait no he still needs more blood" sounds very familiar based on my experience). My grandmother was in hospital for about five weeks longer than she needed to be this year because it took that long to get her a bed in a suitable nursing facility.

There's a PDF from Age UK about hospital discharge that might have more helpful specifics on what to expect and what kind of questions to ask when you meet the social worker.

NHS care seems tremendously disjointed even in hospital settings at the moment - the people handling his care right now, the people handling his discharge and any social worker involved are likely three very separate groups that may not have amazing communication between them. You will have to be proactive and advocate for yourself and your father to work through this system; they're not necessarily going to contact you or give you any kind of useful information about discharge by default.
posted by terretu at 12:06 AM on July 11, 2018

It's not clear from your question if the doctors know what you know ie that your father is visibly bleeding. Depending on your legal system and what authorizations your father signed you might not be entitled to information but you are always entitled to GIVE information.
That he needs blood every day would be concerning to me and I would press very hard for answers.
posted by M. at 1:41 AM on July 11, 2018 [2 favorites]

there should be a discharge coordinator, generally even a discharge team so I would simply ring the hospital and ask to be patched through to the Discharge team. NHS trusts are under huge pressure to not only discharge elderly patients but to do so in a way that doesn't guarantee their re-admission in the next month or so. Their local CCG penalise hospitals that discharge people too early or where appropriate arrangements have not yet been made so that team will want to know about your set up and help you ensure you are able to care for your father.

if they are not aware of his case he is unlikely to be 'almost ready' for discharge, so it gives you one more datapoint.

I would also want to be present at the consultant ward round in the morning (so between 8am-9am) so I would ask the FY1/2 Dr on call when the ward round happens so you can ask the consultant directly.
posted by Wilder at 2:29 AM on July 11, 2018 [1 favorite]

I am not in the UK but in my experience in both the US and in Sweden, patients and patient advocates need to be assertive and persistent to make sure people get the care they need and also doctors and nurses and support staff have the information they need. My elderly dad forgets a lot and sometimes deliberately lies to the medical establishment and so I am constantly updating his caretakers on what I know because it’s often different than what they’ve been told. I reach out to them and follow up; they rarely reach out to me. They are busy and have many patients. They also give my dad good care. So I am respectful and appreciative and persistent. So far, it is paying off. Best of luck with your dad. I hope he is healthy soon.
posted by Bella Donna at 4:03 AM on July 11, 2018 [2 favorites]

Something very similar happened with my mother fairly recently. I can't stress enough that you need to talk with both the doctor and the nurse in charge about your worries. Insist! Camp out in front of their offices.
My mother was admitted to the hospital after my aunt noticed she wasn't making any sense on the phone. Aunt and I went to her flat and almost couldn't get in, because she was so weak and barely made it to the door. I called the ambulance right away.
At the hospital, it was very hard for us to convince the staff that my mother was very ill. Later, they told me that they only admitted her because I insisted that she is normally cognitively unimpaired and that her lack of clarity was unusual. When she was finally properly diagnosed, it turned out she was bleeding from her colon, she had an UTI, and she was near dying from sepsis.
The thing is that hopsital staff are used to old people being demented. Because of the fever and blood loss, my mother was not able to speak or even reply yes/no to the doctors, and thus it was very difficult for them to diagnose her. When she recovered a bit, she "lied" a lot, and I would have to correct her, I still don't know if she lied deliberately because she wanted to get out of the hospital, or if she still wasn't clear in her head, or both, since she would clearly die if she went home before the sepsis was cured.
Since then, over a period of time that includes my mother setting her kitchen on fire twice and returning once to the hospital, I have gotten a full care package from the municipality for her, on the recommendation of the hospital, because I insisted that I am not capable of the level of nursing she needs. The medication is quite complex , she needs regular blood tests, and also the nurses can get her to do things I can't. I think even if you feel able to care for your dad, you should try to get help for his care.
posted by mumimor at 7:04 AM on July 11, 2018

Thank you for taking the time to offer your experiences. I think I really wanted encouragement to actually bother some one at the hospital with my questions, which you certainly provided.

Somehow even though every word I wrote was true I seem to have misled you as to how ill my dad is. I was very scared, especially when they said Dad had signed a DNR, which I thought was mostly for terminal patients. He was too ill at the time for me to ask him if he thought his days were numbered. But while they still don't know when Dad will leave hospital, I did manage to pin someone down to ask if I would be able to leave him alone in my house when I work while he is here and they say that will be fine and he is 'not that ill'! ( I was all set to hand in my notice when you all told me your experiences!) He was barely able to sit up in bed a day ago but now it looks like he is making a speedy recovery and he is very cheerful and making plans for the future! I am going to ask him to think again about the DNR though of course I will respect his wishes. Thank you, again. I will update once more, if all goes well, once Dad has left hospital.
posted by tulipwool at 12:50 PM on July 11, 2018 [1 favorite]

24 hours ago things looked so positive but now, even though Dad has been released from hospital, I am deeply upset. I don't expect anyone will comment now, but I am desperate.

I attempted to be assertive and get answers to my questions today. I completely failed. On the phone, I was told someone would be able to talk to me before Dad was released. But when I got there, it was just - your father is packed, the paperwork is all done, off you go. He needs only the drugs he has with him - they will last a month and he won't need to see his gp til then. I was indignant and asked why no one could answer any questions - the nurse replied that everything was in the discharge summary.

So I read it once we were back at home. It said the ulcers were healing and the bleeding had stopped. It included ckd3 which I looked up - that's his kidney disease. And it said Prostate Cancer.

I know that prostate cancer can be very slow-growing and in an elderly man like my father, if it will take 20 years to become dangerous, something else is going to develop first. So I told myself that must be it. But what about the DNR?

Under the heading Advance Care Planning it says only that the patient was discharged with an 'Allow a Natural Death' form. (DNACPR). This was discussed with the patient.

None of this was discussed with me. I tried once I had read it. I said gently to Dad that I had seen prostate cancer on the form which was the first I'd heard of it - did he want to talk about it? He said he had no memory of anyone ever mentioning it to him. I said we didn't need to talk about it if he'd rather not, and he changed the subject.

I am afraid my father has come home to die. It looks to me that he has given orders that I cannot be informed. So there would be no point trying to ask his GP.

If you see this and have any knowledge of discharge summaries and can tell me whether I am totally misinterpreting the form or if, in fact, I am probably right then please answer. I don't know where else to turn.
posted by tulipwool at 1:52 PM on July 12, 2018

I would contact the hospital social worker, in person, and push back hard. Bring the discharge papers and insist on going through them with the social worker. I would not assume your father has not given his consent to discuss his care, but if so, ask what forms need to be signed so that he can give his consent and get paper copies while you are in the meeting. Make an appointment with your dad’s GP to go over the discharge papers and get that consent form signed if necessary. You simply cannot provide care while in the dark. If there is a strong concern for privacy then professionals need to be providing the care.

As to the cancer, I have had several elderly relatives with a variety of conditions and a slow growing cancer seems to be relatively common in that age group. Often the treatment is worse that the disease and just letting the lesion/tumour be is the most compassionate thing you can do. Growing up, cancer was a scary, shameful, fatal disease but nowadays it is much more of a chronic condition to be monitored (and the patient made comfortable) rather than aggressively treating with both barrels blasting.

The DNR is clearly upsetting you. But even young, healthy people often cannot be resuscitated. It is a violent, upsetting attack on the body that usually results in broken bones in an attempt to preserve a life that subsequently has very little quality to it. You might want to take a CPR/First Aid Course yourself, especially with defib training. You can also purchase personal defibrillators. Your father has expressed his desire, and I think you should honour it, but perhaps you will feel more at peace when you are better informed.

It is scary when our parents are ill. Much like small children, when they get sick it tends to be dramatic and seemingly immediate; a contrast to most of us who continue our daily lives as the walking wounded with a 24 hour bad cold - but that same cold may end up with your father in emerg within hours of the first sniffle.

This seems very overwhelming (it IS overwhelming). Please let the people in your life know what is going on so they can support you. They may also be aware of local options for help you don’t know (like here we have the Victorian Order of Nurses and many non-profits for food, transportation etc). Get those services so that the burden is shared and your father is interacting with several people to avoid him feeling isolated.

This is hard, and you are stronger than you think you are.
posted by saucysault at 6:13 PM on July 12, 2018 [1 favorite]

Thank you saucysault. I know askmefi is not for back and forth but I am doing it, they can ban me later, - how can I ask the hospital for anything? They are DONE with Dad. The discharge summary says 'No planned follow up with gastroenterology.' and under Discharge Information it repeats - 'No Follow Up. No further correspondence to follow.' I was expected to just collect dad and leave, they were very reluctant to let me ask anything, and when I asked if I should phone the hospital if dad's symptoms returned a nurse said no. I should ring dad's gp or 999 in emergency only.
posted by tulipwool at 7:34 PM on July 12, 2018 [1 favorite]

You have to be there, in person, and be obstinate and insist on answers. It sucks, it almost feels like you need to hire an advocate just to get them to listen (it is getting better in my experience, but the system is so overwhelmed it really is the squeaky wheel that gets the grease). Do you have a strong-willed friend who can accompany you? Someone who just won’t say no? Get them to come along.
posted by saucysault at 7:41 PM on July 12, 2018

I can't leave dad alone so I can spend hours at the hospital begging them to see me. He is unsteady on the stairs despite what they told me the day before about him being fine on his own while i work, and he wants company. Nor can I take him back with me. He never wants to see the place again.

I am breaking the rules again by replying! I have no self control at all right now. it is the middle of the night and I am so scared. Sorry. I will go away now.
posted by tulipwool at 7:48 PM on July 12, 2018

He can’t have it both ways, he can’t decide to never go back AND not give you the tools to take care of him. If he can’t be left alone at home so that you can handle adult duties then he needs to be in hospital or a care home. So bring him with you, or, if he refuses to go, call an ambulance. You aren’t a registered nurse and cannot care for him to the standard he needs. It sucks because you are being put in the middle, but if you don’t do something now it will only be a few days before something breaks (his health, your sanity, the sink he leans too heavily on...) and you will blame yourself. Get him back into professional health care and ignore your socialization that tells you to be nice and accommodating. Now go to sleep because your body and mind needs the rest.
posted by saucysault at 8:34 PM on July 12, 2018

In case you are still reading this, I want to further assure you about the DNR. I am 35 with no chronic illnesses (in the US, though) and I've been asked about it/had to fill out forms whenever I switched health systems and had to confirm that my wishes were still valid prior to a small outpatient surgery. I think it's just A Way Things are Done rather than a statement on your father's health. Internet hugs.
posted by BlueBear at 11:42 AM on July 13, 2018

I'm so sorry to hear that last update. I find it bizarre that nobody wanted to talk to you at discharge. They are effectively releasing your Dad into your care, they should explain to you what is going on. My sympathies.

I hope you get a good rest, first. Then - can you talk to your Dad's GP? Your Dad might not need to be in a hospital but realistically you will need support in taking care of him.

I would also consider calling the hospital administration to complain.

Oh, and about the DNR - not sure about the UK but I'd imagine it would be fairly routine to establish the DNR status in a hospitalized patient.

Hugs to you. Feel free to PM me if you want a sympathetic ear.
posted by M. at 1:14 PM on July 14, 2018

I think this question is resolved at last today. Dad spent 10 days in my house, I took a week off work to look after him. Then he returned to his own flat. I have visited at least once a day in the few days he's been there so far, and today at last he saw a GP from his own medical practice, though still not his GP, who was busy.

The morning after my last, middle of the night post I saw my own GP, thankfully able to get an emergency appointment almost at once. She was worried by my blood pressure and anxiety level and prescribed some medication for me. I didn't take it though, it wasn't necessary as she also agreed to look at my dad's discharge summary and said there was no way to tell from it whether dad had terminal prostate cancer or the slow-growing kind that would never be a problem. So I didn't get any new information but I felt so much better anyway as I had been stupidly thinking that when the nurse said all the answers I needed were in the discharge summary, that meant something, - an answer was there if I could just work it out! Once my doctor told me there was no answer there, I realised the nurse was just saying anything that would make me shut up and leave. I wasn't happy about waiting until Dad would agree to see his GP for more answers, but I could cope.

So, at that meeting today I was FINALLY prepared to be non-accommodating and downright rude if necessary and so after the doctor had said Dad didn't even really need a checkup and his recovery was going so well, I asked about the prostate cancer. The doctor said 'What prostate cancer?' Then he looked at the discharge summary on his screen (for the first time obviously) and spent some time going through Dad's notes to try and find any investigation at all that was relevant. There wasn't any. He is writing to the consultant to ask why that diagnosis is there. He thinks it is a mistake.


Dad can make an official complaint, after the consultant has replied to the doctor. But he has no wish to do so. He is entirely happy with his care.

It is also possible for me to make a complaint. I don't know if I will. It was hard enough to stand up to the doctor today, when I have been so desperate for answers. Once I know everything, I probably won't want to revisit this time at all.

Thank you for helping me to be a bit less of a doormat and get a bit of truth 'only' 12 days after Dad left hospital! I wonder if anyone would EVER have noticed the mistake if I had been my usual docile self and left as soon as the doctor's body language said 'this conversation is over' !
posted by tulipwool at 2:02 PM on July 24, 2018 [1 favorite]

tulipwool, thank you for your update. The entire process sounds horrifying. Merely so you know, I had been in telephone contact with a wonderful nurse where my dad was in the hospital for a failed attempt to place a stent in his heart. The nurse promised me my dad would not be discharged until after I got there and was able to talk to a doctor about his situation (I was arriving from out of state). When I arrived, the staff tried to discharge him and I just refused to leave until I could speak to a doctor. (I was tired and I was angry, and I just wasn't going to leave without some answers.) The doctor who had been responsible for my dad's care was paged several times. Eventually, the nurse took me aside and explained that the doctor refused to meet with me, but another doctor was going to be available. Eventually that doctor showed up and the nurse whispered to me, "Ask him every single question you can think of, you won't get another chance," and I did. I was horrified by what I found out; my dad's heart condition was much, much worse than anyone in the family, including my dad, had realized. Honestly, you have done the absolute best you can in a system that is clearly not working well for you or your dad. I am so sorry for all you have suffered; please, please, please start taking good care of yourself as well. Hugs!
posted by Bella Donna at 2:15 PM on July 24, 2018

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