Should I allow my husband to be a Guinea-Pig for Med Students?

DaisyG

Registered User
Feb 20, 2006
183
North West England
Had a rough week last week, lots of appointments, lots of delusions and aggression... and the like.

I've had a letter asking my very nicely if I would consider my husband and I going into the Assesment Unit for the day, and allowing him to be questioned my the Med Students and Senior House Officers.
It can be arranged (unusually) that his CPN can meet us there for part of the day, and the Hospital Discharge CPN take over later.

I know it will involve a LONG day for us, and that it will potentially cause more my husband even more exhaustion, and he could show his aggressive side....

Part of the tests are coing to be 'cognitive', and he always struggles with these.

We've (He's) done so many tests recently, but can't remember ANY of them, so having MORE tests will be like it's only JUST happening.

I haven't said yes, and have until the end of the week to decide.

Thing is, my husband is young, and quite an interesting patient.
He is now on Volume 4 of his medical notes !!

He would definitely make an interesting Case Study for the students, but I also know that it will be a long day for us both.

Anyone have any ideas?

Take Care,

DaisyG.
 

jenniferpa

Registered User
Jun 27, 2006
39,448
I don't know Daisy. While on the one hand, these people NEED exposure to people like your husband, on the other it's you that has to pick up the pieces at the end of the day. On the whole, I think, I wouldn't do it. It's true that if people don't participate in these sort of studies, thing won't improve for those that "come after", and I have myself been a "guinea pig" but that was my decision, not a decision made for someone else. It's all very well being altruistic, but sometimes you have to self-centred as in "centred on self".

Jennifer
 

Grannie G

Volunteer Moderator
Apr 3, 2006
71,144
Kent
Dear Daisy, If you can possibly face it, I would agree.

My friend`s daughter had childhood cancer, aged 12. She`s now 43 and still attends the `Children`s Clinic` every year. Even though it is still distressing to return to the hospital, she knows she helps provide statistics.
We all know what a vast improvement there has been in recent years in cancer care and recovery.

If you agree to this request, it can only be good. But if it`s too much to undertake after all you`ve both been through, and are still going through, it would be very understandable.

Love xx
 

Skye

Registered User
Aug 29, 2006
17,000
SW Scotland
Dear Daisy

It's a difficult decision considering everything you've been through. I've taken John with me to seminars and meetings with doctors and nurses, because I believe it's important for them to experience the problems at first hand. But I don't have to cope with aggressive behavior (just boredom when he can't understand what is being said).

Would it be possible for you to ask if it could be two half days instead of one full day? This is what I would suggest for John. If that's not possible, you could say you think half a day would be as much as your husband could handle.

You would be doing them a favour, so you have the right to impose your own conditions.

Love,
 

Tender Face

Account Closed
Mar 14, 2006
5,379
NW England
Hmmmm ... first I would ask about consent? Is it right that you are being asked to give it when clearly (by writing to you) the medics are acknowledging that your husband can't? Are you sure you feel able to make the decision on his behalf?

I also feel a little concerned for you that you and he are being asked to attend a whole day in what will be a very different environment to anything you have encountered before (just in terms of all the 'personnnel' there) ..... As a 'compromise', with 4 volumes of case notes to go at, could the students not do their 'studying' and then perhaps 'sit in' when your husband is next due any tests in the normal course of 'monitoring'. I appreciate the need for learning, but it does seem an awful lot to ask of you both.

Love, Karen, x
 

Skye

Registered User
Aug 29, 2006
17,000
SW Scotland
Tender Face said:
Not sure if your situation is classed as strictly 'research' ....... but ......
It's an interesting fact sheet, one I hadn't read before, and an interesting question, Karen, one that concerns me.

Therapeutic research may be of benefit to the person with dementia, either during the project or once it has concluded. If the research is a clinical trial with a drug treatment, it should be made clear whether the drug will be available after the end of the study.
Non-therapeutic research will not directly benefit those who are participating, but will add to the body of knowledge about dementia. The findings may benefit people with dementia in the future.
If the research is non-therapeutic this must be made clear to the person with dementia before they decide whether or not to take part.
I think what John and I do comes under the heading of training, rather than research, and this may be what is proposed for Daisy, but it's worth checking.

Another point that bothers me is:

Consent must be obtained from the person with dementia before any research is carried out, even if it is simply a question of an extra blood sample. The carer’s agreement is not sufficient.

Consent must be adequately informed and voluntary. The person with dementia must be aware of the purpose of the research and what is involved.
John is quite happy to come to seminars with me, and I know that when he was well he would have been in favour, but there is no way he can be 'adequately informed'. His language loss makes this completely impossible.
 

Tender Face

Account Closed
Mar 14, 2006
5,379
NW England
Skye said:
....... and I know that when he was well he would have been in favour, but there is no way he can be 'adequately informed'.
Daisy, I'm sorry I don't want to appear to be 'hijacking' this thread to simply hypothesise, but your immediate concern has raised a lot of issues which no doubt many other carers may be faced with from time to time ....(please, mods, feel free to move this elsewhere if more appropriate) .....

I have been reflecting on my own situation with my mother - in that some years ago she agreed - verbally to her consultant - to being involved in a project regarding cancer. That 'consent' or expression of wishes was given pre-AD (or certainly many years before diagnosis) so, if the issue of said project were raised again and I was faced with a decision and simply making it in the context of 'respecting her wishes', I feel I would have to 'go along' with that verbal consent, 'knowing that that was what mum would have wanted'. Or would I?

Is what she wanted then what she would want for herself now? If she is already bewildered and confused by so much, is it fair to 'subject' her to situations which may bewilder and confuse her more? (They might not, but how can I or anyone else know that?) Because she 'may not understand' and 'will forget about it anyway' would it be fair to subject her to any unnecssary appointments/questioning/tests?????

On mulling over this I think I'm rather likening the situation to a parallel with EPAs ... and contracts or consents entered into before 'mental incapacity' to do so has been reached ..... What if mum had given written consent to something I - or her GP - or her consultant - now felt inappropriate? Do I, as next of kin, have the right to revoke that consent? Do I have the right to say 'those may have been her wishes' but I don't agree it is right for her now? (I'm guessing the new LPA will address these issues - but for those of us who will never secure that .....?)

I would hope that 'medical ethics' would kick in and not put a carer in such a dilemma .... which to bring me back to your particular circumstances, Daisy, I actually see it as a little unfair that you have been given 'a week to decide'.

Sorry, for the thinking out loud ... but thought I'd throw it in anyway in case it helps in any way ...

Love, Karen, x
 

CraigC

Registered User
Mar 21, 2003
6,632
London
Hi Daisy,

Difficult one. I known that my dad would have done anything to help others and to help with the research; but as others have pointed out there should be no need for it to be concentrated and stressful. The students should be able to work around you and your husband tailoring the day accordingly.

As Aine said, do you want to do it? My guess is that you are the one who will need to deal with the disruption over the following days, not the students. Particularly if they are not willing to tailor the day around you and your husband.

I also agree that the LPA may address some of the ethical issues which I appreciate is not the drive behind your question. Medical consent is very different from an EPA and I wish someone had flagged that to me a long time ago! It is not easy to access someone's medical records without consent even if you obviously have their best interest at heart. I understand why patient confidentiality is important, but when you are the prime carer for someone with advanced alzheimer's it can certainly make life difficult sometimes. But at least that has been recognised and is addressed.

That aside, best of luck with your decision and your 'unusual' day out.

Kind Regards
Craig
 
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Cate

Registered User
Jul 2, 2006
1,370
Newport, Gwent
Hiya Daisy

I know it will involve a LONG day for us, and that it will potentially cause more my husband even more exhaustion, and he could show his aggressive side....

Daisy if you are in any doubt at all that this day may lead to problems for you at home later, please dont do it.

I fully appreciate that you want to help with research, but if its at a cost to your personal safety, I would say no. You have enough to cope with on a day to day basis. Dont feel you are letting anyone down, you are not. You have been so very brave to struggle on in the most dire of circumstances, you know I have always admired how you cope. Please think very carefully.

Love
Cate xxx
 

Brucie

Registered User
Jan 31, 2004
12,413
near London
As everyone has said, if you have doubts, then it is probably best not to do it.

My reading of your original post is that it is not research that is being proposed.

It seems to me to be the case that there is an attempt being made to give medical students some real experience of someone with dementia.

All too often, the medics can appear to have gained their experience by hearsay, and they really have no idea of dementia from the patient's side, or from the carer's.

Unless students can see at first hand, and understand, the challenges involved for someone in their position, the doctors of the future will always be hampered.

That being said, if I were you and if I was considering helping them, I'd be negotiating for a half day, rather than a full day.
 

Skye

Registered User
Aug 29, 2006
17,000
SW Scotland
Brucie said:
It seems to me to be the case that there is an attempt being made to give medical students some real experience of someone with dementia.

All too often, the medics can appear to have gained their experience by hearsay, and they really have no idea of dementia from the patient's side, or from the carer's.
This is exactly what John and I are doing, Bruce, and I've found them all polite, considerate, and very grateful.

But our sessions normally involve me giving a presentation, involving John wherever possible, followed by questions. I've never been asked to permit cognitive testing, and I would definitely say no to that.

Daisy, I think you should ask for more details, and say you could only do half a day. I think they are asking too much of you.
 

Nell

Registered User
Aug 9, 2005
1,170
68
Australia
Dear Daisy,

Just to add to the good suggestions above . . . .

If you DO decide to do it, ask first that your husband be treated at all times with respect and that if the tests, evaluations, etc. become too distressing for him, they are abandoned.

Also, tell them YOU want to be listened to!! You have had some appalling experiences with this dreadful disease, and I think doctors NEED to know that the patient is not the only one affected by this disease.

On the other hand, if you do have doubts, don't hesitate to say "no". You can explain that you are willing to support research in general but that you have fears for your husband undergoing this process.

I hope you will let us know the outcome - whichever way you choose.
Every best wish as always.
 

DaisyG

Registered User
Feb 20, 2006
183
North West England
Thank you to everyone.... you are all amazingly kind

Thank you all….

I’ve spoken to the Prof’s Secretary this morning, and she tells me that they have allowed a 2 hour break (nap time12-2) and allocated a side bed on a ward.
Lunch provided, not that that makes any difference.
They will be 2 other breaks too.

The Med Students will only be in a group of 6 MAX.
At some point in the morning, they have booked (I’ve not yet decided), the MRI for a brain scan. I think they want the Med Students to be in the side scanner room to ‘see things’ on screen as they happen. My husband is OK with this, as I know that some people can be a bit panicky.
The plan is also to have BADS tests (Behavioral Tests).

As he has no idea of time, and how to judge time, being there all day approx 8-4 won’t really mean as much to him as it does me.
He can be in clinic for 2 hours in Out Patients, and comment on how slow things are today, but another day we can be hanging around MUCH longer, and he comments…
“Are we going home already?”.

I’m most likely to say yes, as I believe that if we can help in any way forward, then it has to be a good thing.

Thank you all again. XXX

Take Care

DaisyG
 

Grannie G

Volunteer Moderator
Apr 3, 2006
71,144
Kent
Dear Daisy,

I`m so pleased you have almost decided to agree. I certainly would if we were asked.

I hope you don`t find it too stressful, but come away from the day knowing you`ve helped medical students provide better care and understanding to future sufferers.

Love xx
 

DaisyG

Registered User
Feb 20, 2006
183
North West England
Me again,

The Secretary was very nice and answered SO many of my questions.
She did not let on, but I think someone has dropped out of the research (which I think IS more like ‘training’) for the Med Students.

I can be there at all stages, ALL THE TIME (THEY promise !), and we can stop if he becomes distressed.

He’s quite happy to chat to students, and has seen MANY in Clinic, but not for as long a day. We’ve even had students (psychiatry and psychology) at home.

Now, as he is so forgetful :confused: , and I HAVE asked him about going to the Hospital,
I know he is DEFINITELY going to forget our conversation…
What are HIS rights, if he decides on the day…..
“Hang on a minute, this appointment is going on a bit too long?”

Also had a thought, what if he is in ‘respite’ for a couple of days before, and I collect him (they have offered a TAXI), then on the DAY concerned we go back to respite, and get the staff to say… “Ohh, are you back already?”.
Bit sneaky, but if he’s grumpy after, then the care home can cope.
Never been to clinic, and back to respite, I’d imagine he would not go with that plan!!

Thanks, I already know the answer to that daft question.


DaisyG
 

CraigC

Registered User
Mar 21, 2003
6,632
London
Daisy,

You are doing such a good thing and I for one am very proud of you both. You can only guage things on the day and pretty sure they would be OK if you needed to cancel for any reasons. If they know anything about alzheimer's they will understand how unpredictable it makes life. Just stay in control and pull out if you think it is going to cause stress (even at the last minute).

Good luck and please let us know how you get on
kindest regards
Craig
 

Grannie G

Volunteer Moderator
Apr 3, 2006
71,144
Kent
Wise words from Craig, Daisy.

It`s enough for you to agree. If anything should happen where your husband is either overtired or stressed, or wants to back out, that in itself is valuable information, showing the medical students how unpredictable behaviour can be, and what you have to cope with, as a carer.

You are not responsible for your husband`s behaviour.

Love xx
 

Skye

Registered User
Aug 29, 2006
17,000
SW Scotland
Well done, Daisy, I'm so glad you've agreed. It sounds as if they've arranged everything to provide the maximum comfort for you and your husband.

If there's anything on the day that you're not comfortable with, just let them know. And remember you can leave at any time.

Let us know how it goes, I'll be interested to hear.

Love,