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AIBU?

To ask if it's normal for families to get very little info when a lo is in intensive care?

19 replies

Retropear · 15/12/2013 22:34

Sorry but I need the traffic.

My dp is soooo worried.

His mum is in IC .Had bowel cancer,septicaemia and an op that went wrong.Getting better but lost lots of weight(apparently normal if you have food on a drip). Tumor sent away ages ago,no results yet apparently.

We live 5 hours away and mil says she doesn't want to know anything,Fil puts his head in the sand to cope so doesn't ask.

Sil said they mentioned cells on her pelvis but they won't give info unless the patient is there.

Went up this weekend but doctors were too busy to talk.They don't like talking over the phone.

Said parents in law are in their 70/80s and due to us being so far away we need to know more.It's like Chinese whispers and making a horrible situation 10 x more stressful for dp. He is imagining the worst.He needs to plan.

Is this normal and do we have to just suck it up?What should we do?

OP posts:

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ajandjjmum · 15/12/2013 22:40

Feel for you - we are a fair distance from DH's parents. Before now DH has called the hospital and spoken to them - he has also made an appointment to see the doctor - and occasionally the doctor turns up when promised!

Is SIL pushing for information, or is she a little inclined not to ask too much because she doesn't want to know (a little like me )?

Sorry you're having to deal with this at the moment.

CeliaLytton · 15/12/2013 22:41

Firstly for you and your dp and wishing his mum a swift recovery.

I am not sure what is usual in these situations, I have always been given very detailed information but IME, unfortunately, those who shout loudest get heard. I am sure the doctors are very busy and I imagine they have numerous relatives who are worried sick to deal with, but you are only there certain days, you need the information then and there and to know what steps to take, if any. You might have to get arsey and point out that if they don't like talking over the phone, they will have to talk in person.

I feel for all parties in these situations, the doctors have a very stressful role which they need to devote their time and energies to, but the families have a right to know what is going on.

I hope you get more information soon and that everything is ok.

BrianTheMole · 15/12/2013 22:46

I'm not sure. My dad is in hosp at the moment, and I do get info. I write out a list of questions that I want answers to and ask them. But I I do work in a similar field, am quite assertive, and am ones of the ones that shouts the loudest.

Bythebeach · 15/12/2013 22:46

You said your mil doesn't want to know? She still needs to consent to any info being given to you. If she does, you could arrange to speak to doctors on phone/make appt to speak in person. Weekends are harder as there will be less doctors about and weekend cover may be less familiar with her case.

Retropear · 15/12/2013 22:47

One sil is miles away too,there is one nearby but she is a little flakey.None are getting info.Mil's sister isn't either and all are worried it's because there is something they don't want to tell us.

Dp is the one who is the organiser iykwim.His dad is 80 and we're all a bit worried about him tbh.

Maybe it's just lack of time(understandable)if others have experienced it too.

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TeacupDrama · 15/12/2013 23:36

unfortunately to get info you need to be there in person, to see doctors ideally mon- fri between 9-5, your relative may have requested no info being shared in which case you will get none, if see does not want to know they may not tell you in case you tell her or give her clues based on this, they are unlikely to tell you much that she or her husband do not know or want to know

I have an aunt with cancer we know nothing because she shares virtually nothing anything we do know comes via her sister who goes to appointments with her, she is just very private it would help my dad if he knew more could help better but her desire for privacy has to be respected

Kundry · 15/12/2013 23:46

It's not usual for you to know nothing but it is usual for drs to want to talk to one or two main family members and them disseminate the information, rather than having several separate conversations. It's also usual for this sort of conversation to be very difficult to do over the phone.

As Teacup says you would need to be there, in person Mon-Fri 9-5, ideally with a booked appointment for your conversation.

Most importantly as MIL and FIL can talk and make their own decisions, the majority of conversations will be with them, the drs will only talk to someone else if MIL has given permission.

Retropear · 16/12/2013 09:08

Mil has given permission,she just doesn't want to know herself.

The thing is if family are miles away it is a nightmare.

Fil is over 80, we need to know prognosis in order to plan for him and help him cope.We're also concerned that she is going to end up missing out and one of these elderly patients left to go hungry,not enough care etc.

I can't believe hospitals don't have provision for family of the elderly living far away which most will have these days.

We waited an hour last night,were there all afternoon and the day before,had to give up eventually,and ended up doing a 5 hour journey in the dark,late with 3 kids.

I'd been a month and we still know very little bar her gp let her down badly.

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yetanotherworry · 16/12/2013 09:17

I don't think they like giving out information on the phone for a number of reasons. First there is a confidentiality problem - even if your MIL has agreed for her personal information to be shared, how do the doctors know who you are (remember that Oz radio call where presenter pretended to be someone else). Secondly its much harder for the doctor to explain what is happening if they can't see you; they can't read your body language to see how much you're taking in and whether you understand. For them, its much easier to tell FIL (next of kin?) and let him pass on the information and its him you need to be talking to. Does your SIL live near the hospital - if so, can she be at the hospital with your FIL when they give him information?

Retropear · 16/12/2013 09:38

He doesn't want to know either.

They're trying to pretend it's not happening(their way of coping). Sil who is near has mental health issues and is not reliable. Fil doesn't like her being involved much as she can stress them out.

It's a nightmare to be honest but thanks for the info,it does make it a little clearer.

I think dp will have to ring the nurse,explain the issues and ask for advice re what to do.

We just don't want them swept under the carpet and suffering needlessly.I can see how it happens tbf with family far away.

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HotDogHotDogHotDiggityDog · 16/12/2013 09:41

I deal with this all the time in work OP.

IMO the issue is with family communication, not the lack of communication coming from the Doctors.

My advice is to call a family meeting and agree between you all who will be the first point of contact for medical information. Your FIL may be down as next of kin but you can can do this and notify the nurse in charge to document it in your MIL notes.

When this is agreed by your DH and his family, you should contact the Consultants secretary to arrange an appointment. If your DH is the first point of contact, you can explain the distance issue and they CAN call you/speak with you about any concerns you have. Sometimes the nurse in charge can arrange it but they don't always know the doctors schedule. The Doctors will have patients on other wards so will not be around on the same ward as your MIL all the time.

One thing I will point out is the medical team and nursing staff will be reluctant to speak to different members of the family when they have already relayed that information previously.

friday16 · 16/12/2013 09:41

We live 5 hours away and mil says she doesn't want to know anything,Fil puts his head in the sand to cope so doesn't ask.

But is the default next of kin who is regarded as competent. After all, not everyone is close to their children, and not all children have their parents' best interests at heart. In the absence of an LPoA for Heath matters or some other instruction from your mother in law to the contrary, the hospital is quite entitled to (indeed, arguably should) tell you nothing and deal only with her husband.

DeepThought · 16/12/2013 09:45

what HotDog said

and yy to having one point of contact only

DeepThought · 16/12/2013 09:45

and I am so sorry that your MIL is ill, how rude of me not to send best wishes

onlyfortonight · 16/12/2013 09:48

I can definitely recommend what HotDog says. I became the family point of contact for my MIL, despite living 4 hours away. The Doctors will talk to you once the family has agreed.

I know this situation is terribly upsetting and stressful, but one way or another you will get through to the other side. I hope your MIL recovers soon.

Moreisnnogedag · 16/12/2013 09:52

A weekend is not a good time to try and speak to someone I'm afraid. The patients will be covered by oncall team who can't guarantee time will be available.

I'd follow hotdogs advice. And unfortunately your DH needs to make time during the week to travel up for a pre-arranged meeting.

Retropear · 16/12/2013 10:40

Thanks all and for all the kind thoughts.

Dp has been up and down a lot but has masses on at work which is now worse as he has been up and down so much.The cost of petrol and parking is taking it's toll too.

We thought he was the designated family member but will double check and follow up all the other advice on here.Some really good info.

Thank you again.

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lurkerspeaks · 16/12/2013 11:11

If your MIL doesn't want to know. Then unless she gives explicit permission for information about her to be shared you won't get any.

Patient confidentiality and all that.

Retropear · 16/12/2013 11:23

They had given permission in a kind of "just tell my son and I'll block my ears kind of way" when he was there(was there full time for a week). Tis their way of coping.

I think dp needs to pin them all down(family and staff) and make it a bit more formal and consistent.

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