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Original poster

Patient confidentiality: if grown-up ds doesn't want to hear provisional histology results

66 replies

niska · 17/12/2018 18:15

...but the full meeting with all medical staff won't be until 4 January, can ds authorise and ask for histology results to be given to me or dh, so at least we know what we are going to be dealing with? An oncology nurse has offered to give the histology results over the phone to ds, but he initially said he wanted to wait till the full meeting - he didn't know it wouldn't be until January though.

Please don't flame me - I can give further details if you want them.

OP posts:
Original poster
niska · 18/12/2018 04:10

He has been told that he can't be given specifics of treatment, but can be given "the outcome" of the MDT over the phone.

He didn't want to discuss "the outcome" over the phone with a nurse, but also doesn't want to wait until next year to find out what "the outcome" was. He hasn't even been told if it's cancer or not, but the nurse seemed to be hinting that it definitely is. Hard to read the meaning of her emails though.

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Happilyacceptingcookies · 18/12/2018 04:20

So sorry your DS and your family are going through this.

From what I can understand so far (as a dr) the phone call MAY have been suggested because they know they can't meet with you u til January and understand that your DS might want more information before then. I know it isn't ideal. And I am not defending their approach, but objectively seeing the problem it's approaching Christmas, some patients/families want to know information over the Christmas break so they are more informed and can discuss with family. Others may prefer to just enjoy Christmas and then deal with information in January. Also the MDT staff will likely be on annual leave from this week until January so they are giving you a chance to access them by phone. Again I know this isn't ideal compared to meeting in person.

If it helps I was in this situation with DF 5 years ago, exactly the same time of year. You aren't alone, I'm sure there are wonderful people on MN who can offer support and hope you have support in real life as well.

Original poster
niska · 18/12/2018 04:26

He declined a phone call with the nurse because he thought a meeting with an oncologist was imminent. Obvs if he can't see a doctor, he will accept the info from a nurse - it's just confusion over timing.

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Original poster
niska · 18/12/2018 04:28

Thanks, Happily, main thing now is that ds feels he wants to access the info before they all disappear on hols. I hope for his sake it's not already too late.

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IfOnlyOurEyesSawSouls · 18/12/2018 04:29

Bless your heart OP. Here is a hug from a stranger.

Original poster
niska · 18/12/2018 04:35

@Happilyacceptingcookies - can a hospital legally withhold information from a patient who wants to have it?

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Original poster
niska · 18/12/2018 04:36

Thanks, Souls. All hugs appreciated.

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Happilyacceptingcookies · 18/12/2018 04:54

What information are they/would they be withholding? The phone conversation was to discuss results but not a management plan, that sounds sensible. I know they have already had the MDT but perhaps the oncology nurse feels the oncologist is best placed to discuss the plan. Especially if you have specific questions about timing of any treatment etc. Given that DS is young it is also likely that they prefer you and/or DS's dad to be present when discussing the plan and that can only be done in person.

Medicolegally if a patient wants to know information the medical team have to provide it unless it would be putting the patient at risk in terms of their mental health. (happy to be corrected here if any medicolegal people are reading).

Does that help at all? Apologies if I've misunderstood any of it.

Original poster
niska · 18/12/2018 05:13

The most basic info he wants is:

Was the tumour they cut out cancerous?

Was it a seminoma, a non-seminoma, or one of the sub-groups, or a mixture?

Would it be better if he just asks those specific questions, rather than requesting a copy of the histology report?

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Original poster
niska · 18/12/2018 05:50

I've just worked out by Googling that all this is about Discharge. He's being discharged from one hospital to another. So the first hospital is trying to carry out their discharge duties, I think. I think they have some kind of obligation to tell him something or other.

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twoseven · 18/12/2018 05:57

Hugs Flowers

Original poster
niska · 18/12/2018 06:06

Thank you, twoseven. Much appreciated.

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jessstan2 · 18/12/2018 06:11
Flowers
Original poster
niska · 18/12/2018 06:19

Thanks. I've been on MN a long time. I never thought I'd be posting this. Sad

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WhoTookTheChristmasCookie · 18/12/2018 06:30

I have no advice, but Thanks for you OP.
What a shitty situation - I hope for the best outcome for you and your DS.

Keep posting, we're all here to listen.

summerlovingliz · 18/12/2018 06:31

Wishing you all the best for a positive outcome x

ItWentInMyEye · 18/12/2018 06:36

Sending positivity ThanksThanks

gamerwidow · 18/12/2018 06:41

- can a hospital legally withhold information from a patient who wants to have it?
There are some instances where information will be withheld until it can be properly explained if there is a danger of misinterpretation.
Some results are confusing and need proper analysis by a medical professional. I think it is very unlikely they will want to withhold this information but they will need to make sure someone appropriately qualified has seen the results. Often with diagnostic tests they will need to be discussed at a team meeting by a group of medics to decide on the next steps and these meetings don’t happen everyday so there may be a delay before the prognosis is known.
If they are withholding the results it won’t be because they are trying to hide anything from you but because they want to be sure of the facts and the next steps before they have a conversation with you. The wait is frustrating but it’s so important that you are given the full picture otherwise receiving the information piecemeal will cause more stress.

Original poster
niska · 18/12/2018 06:45

@gamerwidow - do you know who makes that decision?

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Original poster
niska · 18/12/2018 06:56

Last Thursday there was an MDT including doctors from a cancer hospital. Last Wednesday (the day before the MDT) a nurse offered to speak to ds on the phone, after the MDT, to give him the histology results. For reasons I won't give, for fear of outing us, ds declined that phone call: the reasons were very much to do with what was happening on that day. He now wants that phone call.

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Breakfastofmilk · 18/12/2018 07:01

Ds is indeed the patient, and his wishes should indeed be respected. If he wants to know the results of tests, he must be able to have them, surely? Can a hospital really withhold that information from him? It's his body, he has consented to the tests, they took out his tumour and dissected it - he didn't donate it to them but agreed to it for his own benefit.

Legally they have up to a maximum of a month to give him access to any information held on him and shouldn't "unreasonably delay" release of information within that. They also have an obligation to ensure confidentiality (by making sure that it is the patient they are giving results to and only giving results to others with his permission) and to be responsible in how they communicate a major diagnosis.

It's generally recognised that major information like cancer and HIV diagnoses and serious genetic disorders should normally be discussed in person with someone who can explain all the treatment options and provide as much reassurance as possible. Ensuring that they fulfill this obligation wouldn't be seen as unreasonably delaying giving him information. This is likely to be why the nurse was offering to talk through the outcome of the MDT rather than just the results as that would normally include the plan for any further investigation and treatment as well. That doesn't necessarily mean that it is a cancerous tumour as they also would have a responsibility to fully reassure patients who have had a benign tumour removed (who might also be very anxious)

I've just worked out by Googling that all this is about Discharge. He's being discharged from one hospital to another. So the first hospital is trying to carry out their discharge duties, I think.

That sounds extremely unlikely to me.

You're obviously really understandably very anxious and staying up all night googling frantically.and I'm so sorry you and your family are going through this. However I think that makes it even MORE important that your son gets ALL the information he needs, not just a print out of his results as no matter how much you may feel it will set your mind at rest I'm not sure it would be better for you to spend Christmas googling the terms in the histology report.

Original poster
niska · 18/12/2018 07:03

He is definitely being discharged by one hospital, and has been referred to another.

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Breakfastofmilk · 18/12/2018 07:06

Cross-posted with you.

He now wants that phone call.

If the nurse was happy to discuss on the last week then she likely still will be now if DS gets in contact with her. Presumably he hasn't had a chance to ask yet as it sounds like he only changed his mind yesterday evening.

Original poster
niska · 18/12/2018 07:07

Thanks.

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Breakfastofmilk · 18/12/2018 07:07

Another cross post.

He is definitely being discharged by one hospital, and has been referred to another.

I didn't mean that it was unlikely he was being discharged and referred, I meant that its unlikely that would have any impact on giving him. Information.