The Anne, David and Dr Jones scenario - who is deciding what in this scenario ?

This is so very often happening in the case of dementia, although the doctor has advised taking this tablet in the morning and David is reluctant to administer it, it must need to be taken at that time I would imagine, to have the best effect but, would it be possible to use a syrup instead so a different form of the medication may bring about an acceptance of taking it. A second opinion may also bring a solution to this,

Regards, Robert

Suzie Lloyd

Both David and the doctor are making decisions but it must be decided whom is the actual decision maker. David has different grounds for his decision than those of the doctor. Has it been made clear that it must only be Anne's best interests that are being examined and not those of David?

More information is required in this scenario before any decision can be made.

What is the extent of Anne's incapacity?
What is the weight behind the benefits of Anne's taking the medication?
What is the weight behind the disadvantages of Anne's not taking the medication?
To what extent would either the benefits or disadvantages affect Anne's well-being?
If the weight of the benefits to Anne's taking the medication outweigh the alternative then has the 'Covert Administration of the Medication' been explored.
Have the ethical dilemmas of 'Covert Administration of Medication' in the non-compliant patient been discussed between David and the Doctor?
Has the Doctor called upon others to consider Anne's best interests, i.e. second medical opinion, friends or family?
What might be the grounds for Anne's not wishing to have more tablets?
If so:
Has Anne had an adverse experience when taking medication?
Has Anne had 'swallowing' problems?
Has a physiological/swallowing problem been considered?
Is it 'tablets' per se or is it 'medication' in general?
Is Anne's choice consistent or does her choice fluctuate; if so, to what extent?
Might Anne have personal reasons, founded or unfounded, to her being resistant to David's administering of her medication?
Would Anne accept support from an outside Agency, e.g., Home Care once per day (at the optimum time of day)?

I would need all of the above to be established before making a decision in this case.

Suzie Lloyd

Thanks Robert and Suzie.

A question for Robert - a second opinion about what ?

A question for Suzie - 'More information is required in this scenario before any decision can be made'. Hasn't the mere suggestion by Dr Jones to David, that Anne should start to take this new tablet, already engaged them in decision-making ? Wasn't it a decision already made by Dr Jones, to suggest it: doesn't that suggestion/offer/opinion expressed by Dr Jones, create a decision for David to make; and doesn't David's rejection of the suggestion, then create another decision (or set of decisions) which Dr Jones is forced to make ?

1(5) An act done, or decision made, under this Act for or on behalf of a person who lacks capacity must be done, or made, in his best interests.

The scenario and responses on NMCF are at:

http://nmcforum.ning.com/discussions/the-anne-david-and-dr-jones-scenario-who-is-deciding-what-in-this

If you try that address and you are not logged-in to the NMCF forum, I think you are directed to a 'sign-in' or 'join-up' webpage.

So far there have been 2 responses on NMCF, which I'll copy in here:

Rachel Griffiths January 20, 2017 at 10:01am

Thank you Mike for this scenario: not an uncommon one, I would guess. In answering them, I'm giving my own responses, and 'thinking aloud' as I do so. Hence this may not be either well-written or even consider all the aspects of it. I would be interested, as would Mike, in knowing what other people think.
My starting-point is that any discussion of the best interests of a person lacking the capacity to make a decision for herself must be as collaborative as possible, and that the wishes and the feelings of the person have great weight. Also, a decision made today may not reflect the views of the people involved for ever. Another aspect of best interests thinking, not as far as I know laid out formally anywhere, is the recognition that situations change over time and our opinions and wishes may change with them - so we need in making a decision to be aware that this is the best we can come up with now, but the decision can be revisited if circumstances change.
Anne here is clear that she does not want any more tablets. I presume the obvious suggestion of finding ways to give her all her medication in liquid form has been explored and found to be impossible.
So then the question arises: even if David was willing to try to get them into her (not just once, but every day, and then she'd have to wait half an hour before breakfast, which might be very trying for her), is the distress involved proportionate to the benefit? David at this time thinks not. Nobody can make him change his mind. Nor should they be quick to try: he knows his wife far better than any professionals can, and loves her more. In the absence of strong evidence to the contrary (which is absent here) there is no reason to assume he is acting other than in her best interests: and in placing her wishes and feelings at the heart of his decision-making, he is acting within the spirit and the letter of the MCA s.4.
So Dr Jones needs to decide whether it is necessary and proportionate to consider other ways to get these tablets into Anne. The concept of necessity and proportionality is linked, in the MCA, specifically with restraint, but must also apply to any intervention in the life of a person lacking capacity: this concept is at the heart of Articles 5 and 8 of the European Convention of Human Rights. And there is no suggestion here that the new tablet is a magic dementia-curing bullet of a kind yet to be invented.
If s/he could justify the costs to the practice of sending a district nurse every morning to give Anne the tablet, would this nurse be any more likely to be successful in persuading Anne to take it? It's possible that she would - many of us tend to fall in line with 'the nurse' - but it's equally possible that Anne would be even more suspicious of this uniformed stranger than she is when David asks her to take tablets.
Eminent judges have warned us to consider very carefully whether any force or deception to achieve a perceived 'good' for someone is justifiable: we should, then, reconsider how necessary any intervention, in this case the extra tablet, is. My hope is that Dr Jones might decide that no extra tablet is worth risking Anne's relationship with David, and making her feel unhappy and disempowered and bullied (by the person she loves and is reliant on) into doing something she hates, on a daily basis. This is I guess how David sees it. The GP must give weight to this view. After all, Anne is completely dependent on David's care of her, and behind that lie all the imponderables of love, companionship, mutual trust, and a long marriage. These could not be bettered or even equalled by any public intervention, such as a care home bed: they are to be supported and valued - even cherished - by professionals.
Dr Jones may continue to believe that Anne would benefit from the new tablet. But s/he may also decide that being 'right' is, in this situation, outweighed by these imponderables and that s/he must recognise and accept the situation as it is. By doing so, and doing it gracefully, Dr Jones makes it possible that, if David changes his mind, or if the progress of Anne's dementia is such that she forgets her antipathy to taking tablets, the situation can be revisited in the necessary collaborative way.
I have wondered, fleetingly, whether Mike is hoping to lure us into suggesting either a safeguarding alert or an application to the court of protection. I would strongly resist either of these escalations in this situation!

Hugh Constant January 20, 2017 at 4:13pm

Coming to this a little later than planned, I see Rachel has said everything I could possibly think of saying, and more, and put it much more eloquently, too. It would seem like an overly-simplistic take on Anne's best interests to say that the tablet, and its benefits, necessarily outweigh the daily distress of its administration. Like Rachel, I think that distress would be all the more damaging for being caused by her husband, and I would want to explore the option of a district nurse, to see if Anne would more willingly accept the tablet from a professional.
The question, Mike, about what decisions are being made is an interesting one. It could easily be thought that if it's in someone's best interests to be prescribed a medication, then it is inherently also in their best interests that the medication is then actually administered. But your scenario highlights the perils in that assumption.

Hi Mike,

Yes Mike - they are already engaged in the decision-making process, however, there are multiple decisions to be made and, moreover, an hierarchy of decisions; the primary decision being that of the weighing of advantages/disadvantages of Anne's taking of the medication.

Suzie Lloyd

Hi Mike, in answer to your question, what I meant about a second opinion is that of another doctor who may look at the scenario through a fresh pair of eyes!

A question from me too in that a medication should not be broken or given in other than its form as produced by the pharmaceutical that made it but, Can it be changed by the Doctor in some cases and if so would this help Anne with her condition?

Best wishes, Robert

Hi Suzie and Robert,

I'll answer Robert's question: your 'could the medication be given as a syrup instead of a tablet' suggestion makes perfect sense IF David is refusing to give Anne the tablet, because Anne has 'problems with' tablets - but, I deliberately did not explain why David believes Anne should not be taking the tablet. Nor am I suggesting that David is disputing the clinical consequences of taking, or not taking, this tablet, as described to him by Dr Jones.

Suzie, I am about to give away too many 'clues' to my position on this scenario by making this point (on NMCF I said I was happy to give my own answers, but preferred to do that after some other people had answered - I'm still hoping for more answers) here: if there is a 'primary decision', then I would agree with you that the decision involves 'the weighing of advantages/disadvantages of Anne's taking of the medication'. The main purpose of my scenario, is to investigate who, if anybody, is best-placed to consider that question - and, as I'm not ruling out that more than one person can legitimately consider it, what mechanisms exist to sort out a dispute between two-or-more legitimate decision-makers ?

Right - I understand now why the scenario was so vague ....

Suzie Lloyd

Did David take Anne to Dr Jones for a reason?

Hi Sally-Ann,

A good question - I admit that I had paid little attention to that: I had constructed my scenario 'from the different positions of David and Dr Jones, and working 'backwards''.

The easiest thing to fit with my scenario, would be for Dr Jones to be aware of some particular medical issue which affected, or might potentially affect, Anne, but not that David or Anne had specifically raised it with Dr Jones. For the sake of 'a sane scenario' we need to assume that is Dr Jones who, unprompted, comes up with the suggestion that this new tablet might be a good idea. A variation on the 'the GP suggests it might be a good idea for you to have a flu jab' situation.

Suzie, now that I've given away more clues to what I was trying to 'get at' - how many 'legitimate decision-makers' do you think there seem to be, in the scenario I've described ? It seems to me that you understand the MCA - how many people in the scenario could 'reasonably believe that what he does or decides is in the best interests of the person concerned [having complied with the requirements of subsections (1) to (7)] ?

I think that there should be continued discussion with Anne and David re the medication. Many people who are ill say they don't want medication on countless occasions as they just get sick of medication as a whole and many people have taken a lot of medication in their lifetime. They possibly dislike and side effects and maybe the taste of it. Have all the benefits of taking the tablet been explained to Anne? Is it possible to administer the tablet in a different way ? ie crushed, in a drink/liquid form ? I am not sure of the legalities of this however.

I think we are falling into a "blame culture" here, as to whom must take the rap if the medication isn't administered.
1. Anna was taken to the GP.
2. He prescribed medication. Whether the GP gave it in tablet form or not is irrelevant. He did his job. He made a diagnosis, he gave a result.
3. Whether or not the recipient TOOK the medication is up to them. If they felt it came in the wrong format, didn't taste nice, etc etc, is no longer the doctor's fault. That lies within the 4 walls of the recipient.
4. Whether or not the recipient has a mental problem or not, they still made a decision to GO TO THE DOCTOR.............
5. Why then would they make another decision to refuse medication? If these decisions are being made, do not blame the care industry or the health industry. IT's a all a case of own responsibility, and people must start living up to them.

Sally-Ann,

I did not explicitly introduce 'blame' into my scenario, as it was written - nor did I state that Anne had been taken to the GP and this new tablet requested. All I wrote was:

'Anne's GP is Dr Jones, and Dr Jones believes that Anne should start to take a tablet '.

I certainly did not suggest that Dr Jones should be blamed for suggesting the new tablet.

However, 'blame' creeps in, often, if people start to take positions about who (Dr Jones or David) is 'in the right' with respect to their disagreement - I'm certainly not 'blaming' either of them, up to the point where my scenario as described ends. I might 'blame' one or other of them, for what happens next - so you would need to describe what happens next, before handing out blame.

Hi all,

I repeat my main assertion; the benefits of the medication, or lack thereof, to Anne is the paramount set of 'informations' required before any decision should be made.

Suzie Lloyd

Hi Suzie,

As I've pointed out:

'The clinical consequences of taking this tablet, and of not taking it, have been explained to David by Dr Jones.'

So Dr Jones and David each made their different decisions with an understanding of that to hand.

Liz Taylor posted this answer on the Dignity in Action Facebook page yesterday:

I'll try again, i think the comment that you often make about things being complicated and never cut and dried is very true in this case. In our hypothetical scenario we do not have the information about the consequences of taking or not taking the medication. That may be irrelevant but it is clear to me that there are a number of competing interests being applied to the decision making process. The GP may well believe that the prescription discharges his responsibilities in respect of doing his best for his patient. The husband has the competing personal interest of wanting the best for his wife, but not wanting the angst and upset that comes with conflict and trying to get his wife to do something she doesn't want. The wife is not a position to make 'balanced decisions', and therefore will make the decision that is right for her at the time. I think there is no right decision in the situation, rather it is about balance and accepting that some consequences may be more powerful influencers than others.

Anne, clearly needs her new med's to make life easier for her, her doctor has perscriped in Anne's best interest. Parapse if david tried to look at different tacktis that would appeal to Anne, changing his tone, or how he a proaches her, what would apeal to Anne, taking the med with something she liked.
Try no to make a big fuss over a what will be part of her routine.

See also a related piece at https://www.dignityincare.org.uk/Discuss-and-debate/Dignity-Champions-forum/The-PDF-contains-my-Anne-David-and-Dr-Jones-scenario-it-poses-the-question-what-is-the-meaning-of-shared-decision-making-for-EoL-at-home/947/ and the PDF file which can be downloaded from there.

I've just asked what should happen next in 'Anne, David and Dr Jones' in a tweet at:

https://twitter.com/MikeStone2_EoL/status/879624254148534272

Would any DiC readers who are Twitter users, be kind enough to retweet that tweet, please?

I have just received another response by e-mail, and I have permission to publish it:

I asked Brendan McCormack, who I had exchanged the odd e-mail in the past with, for his view on the scenario, and he sent to me this:

We could have a long and lengthy discussion about the various ethical and moral and legal perspectives in this case. However, as a person-centred practitioner/researcher/academic and a humanist, it is more simple in my head, but with a few caveats, i.e. I don’t know what these new tablets are for; I assume Anne is not able to make a decision for herself. David’s decision is the only one that matters – he knows her best, he (I assume) loves her and spends most of his days with her and is thus able to know by her emotional and behavioural responses if she does or does not want something to happen (process consent). Nothing in the case detail says she is ‘suffering’ other than when David is trying to administer this medication. Clearly she does not want this tablet and so that has to be respected.

PS: I ‘hate’ the language of ‘suffering with dementia’ as we have no idea if people suffer or not. I only use the term ‘living with dementia’ and use the word ‘suffering’ in specific cases, e.g. when we know someone is in pain, discomfort etc

Best Regards
BRENDAN
Professor Brendan McCormack,
Head of the Division of Nursing/
Head of QMU Graduate School
Associate Director Centre for Person-centred Practice Research
School of Health Sciences
Queen Margaret University
Queen Margaret University Drive
Musselburgh
East Lothian
EH21 6UU