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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:
FilledSoda · 17/12/2018 18:18

Would he want to though ?

Original poster
niska · 17/12/2018 18:20

Yes, he won't mind us knowing.

OP posts:
GissASquizz · 17/12/2018 18:22

Yes, if he gives express permission.

Veterinari · 17/12/2018 18:22

As long as he authorises it, the medical team can discuss info with you

hugoagogo · 17/12/2018 18:23

In my experience when your child is over 18 health professionals will sometimes talk to you if that child agrees to it.
I can imagine you must be terribly worried and frustrated, mumsnet can be a great support, I hope it is for you.
CakeWine

Original poster
niska · 17/12/2018 18:24

Thank you so much - that is really helpful. Does it need to be permission in writing, eg by email, please?

OP posts:
Hiphopopotamous · 17/12/2018 18:25

I wonder if you should await the MDT outcome before finding out, otherwise you might have an anxious holidays with only half the story?
(GP)

Petalflowers · 17/12/2018 18:26

Yes, ds can give permission for the medical,staff to talk to you.

He can verbally tell,the department or put,it in writing.

Original poster
niska · 17/12/2018 18:27

I am happy for ds to be in denial all the hols through, but I will be more anxious if I don't know the nature of the tumour.

OP posts:
Original poster
niska · 17/12/2018 18:28

Basically he has had surgery and that might be the end of it. It could be one of a number of types of tumour.

OP posts:
Original poster
niska · 17/12/2018 18:31

Obvs I wouldn't expect any info to be definitive. And I respect ds' desire to have a definitive picture with oncologists present to ask questions of. But if I don't have an indication, I will imagine the worst. Ds isn't imagining the worst because he's not thinking about it. Thanks so much for all your input so far.

OP posts:
purplecorkheart · 17/12/2018 18:35

Might be worth asking your son to put something in writing. Some people may want to cover themselves with the new GDPR rules.

SummerGems · 17/12/2018 18:39

I am happy for ds to be in denial all the hols through, but I will be more anxious if I don't know the nature of the tumour. this is his call to make though. Please don’t make him feel he needs to give permission for his results to be discussed with you in order to alleviate your anxieties.

He’s an adult, if he doesn’t want to know yet then that is his prerogative and it’s not fair to put any kind of pressure on him for you to be allowed to know if he doesn’t want to.

FWIW, I know of a situation where a result has been given to family before the patient wrt pathology results of a tumour, however these were exceptional circumstances and the person concerned said that actually it made her feel far worse because she knew the result was worse than they had hoped for iyswim.

Please think about how you will feel if it turns out the tumour is malignant and your DS doesn’t know and you do.

Sleephead1 · 17/12/2018 18:39

I work in a surgery if the patient gives consent in writing with all their details plus the person they want to give consent for and signs it then yes we can speak to that person on their behalf.

ladybee28 · 17/12/2018 18:42

Are you really going to be able to keep the knowledge secret from your DS all through the holiday season?

You're certain your demeanour won't give anything away in either direction?

anniehm · 17/12/2018 18:45

Over 16's can give one off or ongoing permission for their medical team to talk to parents - my dd has this in place due to mental illness, when she's ill she cannot give consent. But is there any advantage to know sooner? I know you want to find out but partial information then having to wait could be worse.

SummerGems · 17/12/2018 18:46

Let’s say that this is a stage4 tumour. No hope of a cure, fast growing, fast spreading and you know that the outcome is inevitable.

Are you going to be able to keep quiet about that?

I have serious medical conditions and my family knew of them before I did because I was unconscious in an induced coma. However they told me as soon as I woke up (there was a chance I wouldn’t hence they had to know, iyswim.)

If I didn’t want to know there is absolutely no way I would give consent for my family to have results before I did just so they could have peace of mind while I wanted to remain oblivious.

XXcstatic · 17/12/2018 18:49

The short answer is that the medical staff can discuss anything with you, as long as they have your DS's permission. However, I agree with PPs that it is going to be very difficult for you to keep the news from him, whether it's good or bad.

Fingers crossed for the very best news, whenever you get it Flowers

Millie2013 · 17/12/2018 19:44

I’m so sorry you’re going through this, OP Flowers

Roamingseams · 17/12/2018 21:21

Hi OP, I understand how worrying the wait for results can be - I have been there too. My child's oncologist always refused to give us any indication over the phone (in our case we could have had it as our child was under 18). Her reason was simple: she wanted to be able to give us the results and immediately a plan of action. I found this approach comforting.

Personally I would wait - no matter what they tell you, you will worry - whether good or bad news. At least if you wait until January and it's bad news you will be able to focus on the treatment if you have the full picture. Fingers crossed for good news xxx

Original poster
niska · 17/12/2018 22:43

Thanks for all your advice. Ds has decided to ask for the results himself. However, it seems like the hospital won't send them by email, so we may have to go to the hospital? Does that sound right? Do they have to be handed to him in person?

OP posts:
Itwasflick · 17/12/2018 22:47

I’m very very surprised they are giving histology results before MDT. We would never do this. Especially over the phone. Not even to the patient

We will give them an indication of what we think it is but results over the phone is shocking.

All our results are given after MDT in the presence of a consultant and clinical nurse specialis/oncology nurse

LookImAHooman · 17/12/2018 23:12

Thanks for all your advice. Ds has decided to ask for the results himself. However, it seems like the hospital won't send them by email, so we may have to go to the hospital? Does that sound right? Do they have to be handed to him in person?

Not quite the same situation but I do know that when someone is getting test results for serious genetic disease then the results will only be given in person so clinicians can discuss the outcome and be sure there’s no immediate risk of the patient doing something rash they may regret.

Flowers I hope whatever happens here that you get a good outcome.

Breakfastofmilk · 17/12/2018 23:33

Thanks for all your advice. Ds has decided to ask for the results himself. However, it seems like the hospital won't send them by email, so we may have to go to the hospital? Does that sound right? Do they have to be handed to him in person?

I hope this means he's going to get the results with someone who can talk him through what they mean and the potential treatment options (although this won't be as full a picture until after the MDT). I hope he isn't just going to be handed the results and left alone with google.

I also hope that this is his own decision, not something he's doing to ease your anxiety. My mum pushed me into googling my Dad's diagnosis (against my wishes and judgment) and it made me far more upset and anxious because the Wikipedia prognosis was extremely bleak.

I understand that you're anxious but it might be better to wait for the MDT, especially if that's what your DS wants. He's the patient and it should be his choice.

Original poster
niska · 18/12/2018 04:03

Sorry, the MDT has already happened, last week. 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.

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