My name is Caroline Barry I'm a palliative care consultant based at the [hospital name unclear] and I'm also co-director of the motor neurone disease Network in Norfolk and Waveney. So I'm here today to talk a little bit about risk best interest decisions and mental capacity it's an interest I've had for many years. Now did a master's medical law about 10 years ago so what I want to do is sort of weave some of our clinical practice in with the medical case law and also some of the statute in this area because I think it's particularly relevant to motor neurone disease. But it's not always an area that gets a lot of attention so just in terms of the outline of the session I'm going to revise some of the basic principles particularly around the law I know many of you really experienced in your own practice. But hopefully it'll be a good refresher then we'll go on to think about.

The specific relevance to decision-making in motor neurone disease and I'll finish up with some case examples which are based on real life cases that have had details changed and anonymized just to help crystallize some of the things that we've been talking about.

Before we get to talk about mental capacity we have to consider the matter of consent and I think certainly from my perspective as a medical doctor we can spend a lot of time talking about whether someone's got capacity or not which is often about. The person isn't it the patient in front of us but I think we spend considerably less time thinking about whether as healthcare professionals we're really really meeting the required standard of consent and yeah consent in this process is the most important thing because. If we don't have the permission of a patient to give them medical treatment to sort of lay our hands on them even we're actually committing a criminal offense ourselves. So it's really important irrespective of whether someone has capacity or doesn't have capacity that we understand the standard of consent that is required and I perhaps just bring your attention to the phrase at the bottom compliance is not consent.

So I work in an area where with an older population often people are quite traditional they you know it's whatever the doctor says is right. But actually just going along with what a doctor says isn't true valid consent so.

So what valid consent well in order to be valid consent must be voluntary so that means that the patients come to that decision for themselves they're not being pressured either by family members or a healthcare professional to make any form of decision and it's also informed. So they've got been given all the information that they need about what the treatment might involve the benefits or risks of the operation what some reasonable Alternatives might be and what might happen if the treatment doesn't go ahead.

So this issue around what constitutes full information has been particularly relevant with some recent case law in the case of Montgomery so Nadine Montgomery was a lady who was pregnant she had a diabetes in pregnancy. So gestational diabetes and she was not informed during her pregnancy the risk of the serious complication of shoulder dystocia during a vaginal delivery that's where the baby essentially and shoulder gets stuck during a vaginal birth which is a higher risk in diabetes because. The babies are larger now when this risk unfortunately went on to materialized she brought action against the trust and said well hand second if I'd known if I'd been given the full information I would have opted for a caesarean section in this circumstance. So you didn't have valid consent from me in that circumstance so the court found in favor of of Montgomery and and what the court found was actually.

We do need to be really mindful of communicating those material risks to patients and that we need to understand what risks of particularly important to them before we can obtain consent from them.

Now sometimes I think family members sometimes healthcare professionals are surprised to learn that family members don't have an automatic automatic legal right to be involved in decision and that they cannot sort of give consent on behalf of another person. So next of kin is a phrase that's often used but it has absolutely no legal meaning whatsoever the only way in which family members have a legal right to be involved in decisions is if the person themselves has capacity and says yes please I'd like my husband. And wife whoever to be involved or if the person lacks capacity and it's been determined that it's in their best interest to consult family members in the best interest decision-making process or indeed if there's a power of attorney in place.

Now the GMC that regulates doctors in particular has something to say about refusal of consent which is actually you know not not linked to capacity in this in this sense and they're saying that you've got to 5 minutes, 1 second respect a competent patient patient's decision to refuse an investigation or treatment even. If you think their decision is wrong or irrational so I think many of us probably had knew of people who for example didn't feel that the covid vaccination was for them at the time that might felt really wrong and irrational to us. But we had to you know obviously respect those people's views to make that decision even if it's not one we agreed with and as I've said before it's not up to USS to pressurize people to accept our advice and we've got to be careful. That our words and our actions don't imply some sense of judgment around.

The patient if they have beliefs or values and I think that's quite can be quite difficult I know certainly in clinics sometimes you can see someone deteriorating they're not keen on the idea of a gastrostomy. But you know that you know they want to keep living as long as possible and they'll probably have a better outcome if they go ahead and and have the procedure it can be difficult not to feel like you're pressurizing someone into making a decision. That you agree with.

So if this isn't about just getting people to agree with us but getting valid consent what are our responsibilities well I think in all cases we've got to clearly record that the person has been fully informed about their choices and I think even. If in in the room of people I'm talking to you don't consider yourselves senior decision makers around for example gastrostomy Insertion I think we've all got goal if we interact with people you know speak to language dieticians occupational therapists that we're recording information about people's understanding of those choices. The information they've been given and your view on whether or not you feel they have capacity I like this quote from the seven from 20 years ago. Now it said it's not the task of the courts to prevent those who have the mental capacity to make rational decisions from making decisions which others might regard as rash or irresponsible after all many people make rash and irresponsible decisions. But are full of capacity.

Okay so we've established that we need to have valid consent but but what happens if we don't think that a patient is able to give us that consent well this is where the Mental Capacity Act is relevant and thus has been in forced since 2007. Now and when it did come into Force I think it's important to recognize that in contrast perhaps to the mental health act which was seen as sort of sectioning people and taking away people's rights in some sense the mental capacity was seen as a really empowering piece of legislation. So this was about really enabling people to live freedom from sort of interference and you know that kind of care in the community type movement. So this is really about enabling people to make choice and that's got a long history in sort of English and Western bioethics.

But the Mental Capacity Act isn't the only law that we've got to consider so the Human Rights Act 1998 put into English law the notion that all passed and future laws need to be interpreted in line with the European convention on human rights. Okay so if we're executing the Mental Capacity Act rules around the Mental Capacity Act we've got to make sure that not only we compliant with the Mental Capacity Act. But also that we're not inadvertently breaching people's human rights at the same time so there's two key article rights as they're called two key human rights that are relevant to healthcare law in this context one is around the right to Liberty article five. And the other is around the right to private and family life which is article eight so the right to Liberty article five is probably most renowned if you like for being the reason we have the Deprivation of Liberty Safeguards and.

The article eight was probably most prominent case was in that of Janet Tracy versus Adam Brooks hospital so in that case janic Tracy who' had a car crash and was on critical care in hospital. But also had a lung cancer came to find out that she had a do not resuscitate do not attempt resuscitation recommendation in her clinical notes and she hadn't been consulted about that. So she brought action against Adam Brooks hospital and said that she felt that her human rights have been infringed by not being consulted about the existing existence of this DNACPR recommendation and the court found her in favor of Janet tracing and found that. Actually there was a right to consultation and also a right for her to have a second opinion about that decision and then in the later case windspear they found that that right to consultation.

And that right to a second opinion also applied even if jet Tracy or or an equivalent person lacked capacity now the Human Rights Act recognizes that there will always be times where people's rights have to be infringed for one reason or another those rights are not absolute. I think we all know you know if there was a bomb scare tomorrow down the road and the police had to keep us in one area for our safety for a period of time we would accept that our Liberty was infringed in in. That matter for a short period of time so the idea is that it's proportionate so any interference is proportionate to the risk of sort of harm or or the need for benefit. But also that when we know that we're going to have to infringe someone's human rights example with.

The Deprivation of Liberty Safeguards that there are procedures in place to make sure that that infringement is done in a lawful and correct way that there's checks and balances and that's why although they are very long and very complicated we do have things like. The Deprivation of Liberty Safeguards to Define how we can care for people with impaired capacity in a different setting I'm spending quite a bit of time on this because I think it's important to emphasize that we you know it's health professionals we're the only people other than. The police that have the right to actually take away someone's Liberty and it is a it's an important right and it's one that needs to be done correctly and I think this some this quote some Rises it wellous this English law goes to Great Lengths to protect a person of full age.

And capacity from interference with personal Liberty we've too often seen Freedom disappear in other countries not only by cudar but by gradual erosion and often it's the first step that counts. So it would be unwise to make even minor concessions.

So how do we apply this to the Mental Capacity Act and what we know about the Mental Capacity Act well just to whiz over what I hope you already know which is. So clearly we need to assume that person has capacity unless it's established that they lack capacity so it's not up to the person to prove to us that they've got capacity it's up to us as healthcare professionals to disprove that they have capacity. I hope you'll all be pretty good at this I'm sure you are the professionals I work with anything to go by but we don't want to be treating people as unable to make a decision unless all practicable steps have been taken to do. So without success and I think in MND we know don't we that if you come across healthcare professionals who are less familiar with the condition it it can be really easy to assume that.

The person isn't able to make a decision because they're not familiar with perhaps the technology someone's using or the means of communication making sure that all practicable steps have been taken to ensure that that person reached the threshold for capacity. Now in law there's two what we call burdens of Truth so in criminal law in order to be convicted of a crime the burden of proof is beyond all Reasonable Doubt. Okay so we've got lots and lots and lots of evidence and really got to pour over it to make sure we're absolutely certain we're making the right decision before we convict someone of a crime in civil law and that's what mental capacity falls into we're talking about. The balance of probabilities okay so this is a more likely than not it's a 51 49% so I think it's important because often we see very very very lengthy decision-making process and I see people go who've been consulted time.

And time and time again but actually we haven't got to be absolutely certain that we've made the right decision about mental capacity we just need to be satisfied on the balance probability that we've made the right decision and. Finally we know that a person will only be judged to lack capacity if he's unable to make a decision for himself because of an impairment in the disturbance of the functioning of the mind or the brain. So what do we mean when we talk about a person being unable to make a decision well this will be familiar they've got to understand the information they've got to retain that information they've got to use and weigh it as part of the decision-making process. And they've got to communicate those decisions by any means another relevant factor in motor neurone disease is executive capacity so mental capacity doesn't just involve the ability to understand the consequences of a decision we call that decisional capacity.

But also the ability to execute the decision which is executive capacity so you'll be familiar with the idea of executive dysfunction so about the idea that the ab inability to put into practice knowledge or information about decision when actions required. But you might be more familiar with it in a sort of ADL setting where someone's unable to sort of sequence tasks or attend to their own personal needs because of executive dysfunction. So sort of colloquially this might be to sort of thought about as they can talk the talk but they can't walk the walk. So they can talk about the consequences of not having something not having a CH not having or having a che but actually when they need to make that decision they can't follow that through we could probably see examples of that quite easily in our own lives. I mean if you think I Sav to my children.

Now what are you going to do when you get to the get to cross the I'm going to stop and I'm going to look both ways 20 seconds later run straight across the road. So you know you can talk the talk but you can't always walk the walk but actually mental capacity involves both elements so in summary then we've just got to apply take that into account. But apply a single test is the person unable to make a decision and the case law has been clear that actually that's the first question the first question isn't have they got an impairment in disturbance in the mind or brain it's the first question is are they unable to make a decision. If so is it due to an impairment of the mind or brain and critically there's got to be a link okay so there has to be unability to make the decision must be due to the impairment of.

The mind or the brain there must be what they call a causative Nexus the the whatever is going on in the mind or brain must be leading to the problem with decision-making.

So what does this look like in practice well there was a a case around nine years ago which made the headline so I think you can probably see why. So there's a woman who was in her late 40s when she was diagnosed with breast cancer and she said well no I'm not going to have any treatment at all for that because I don't want to get fat I don't want to look any different in a bikini. Actually my you know personal appearance is the most important thing for me and then as she got few years went oh life got a little bit more stressful and she ended up going to a beach taking an overdose of 60 paracetamol and a bottle of vintage champagne. And then she came to hospital now when she came to hospital the medical doctors assessed her.

And said she had a 90% risk of chance of recovery if she just had couple of one-off sessions of dialysis and she would make a full recovery she was otherwise well and two psychiatrist assessed her and said well actually I think she's got personality disorder she seems narcissistic she seems to. You know she's just say that she's lost her spark or she doesn't want to be ugly so that's why she's tried to take her own life. So this was a case where we had someone who did have an impairment of the mind or brain because it just have a personality disorder. But she sort of said that she didn't want treatment for her suicide attempt so the court had to consider actually whether she had capacity was that personality disorder of a nature and severity that she couldn't actually make a decision for herself and actually. What.

The court found was that she had made a decision she she had used information to weigh up and decided not to have dialysis and even though her value system about not wanting to be fat or ugly or or not having a sparkly life something anymore wasn't a one. That most of us would have chosen she had got those values those values were consistent in her life and she'd used those to make a decision to refuse treatment and actually because she'd been able to make that decision the fact that she had a personality disorder was judged irrelevant. So I think that's quite a shocking case and you can understand why why it made headlines but that's sort of the level if you like the court have found.

So what we need to ask ourselves don't we then as professionals is is firstly why might a person living with motor neurone disease be unable to make or communicate a decision and at what point or at what level might those reasons cross the threshold to incapacity under. The Mental Capacity Act okay so these were some of the things that I came up with I think these are all things I've seen in practice and that have certainly undermined people's ability to kind of come to a decision quickly are increasing knowledge around cognitive. And behavioral change in MND is particularly relevant so I think clearly if people have got frontotemporal dementia we know there may be a loss of insight around either the severity or the consequence of their condition it can underere interfere with the idea that people really understand. The need for treatment.

But also more subtle or earlier changes such as behavioral impairments in MND that element of mental rigidity people come to Clinic perhaps they only want to talk about that one thing you know the wheelchair has not arrived or the saliva management and actually. That mental rigidity can actually get in the way of a person's ability to grasp the relevant information that they need to make a decision around something such as gastrostomy. But then we also know that people might have more of the cognitive impairments with MND so that's problems around their verbal fluency attention their working memory and that's really about that ability to kind of retain and understand and use the information and you can see how problems in. That area might affect decision-making capacity in that way.

So let's turn now to some case studies and see how you think you would apply these in practice so the first is a 72y old woman who presents quite late with an advanced bulber MND she comes to a hospital setting she's already lost 18 kilos in weight. And she's unable to speak or swallow all she's partially deaf she can't hear but she is partially deaf and she uses a whiteboard to communicate or attempts to assess sort of cognitive functioning. But it's abandoned because all she ever writes on the Whiteboard is I want ice cream rather than answering questions you sort of say to her you know I think we need to talk about a feeding tube.

And she just shakes her head you say you know I think you're like to come to harm she just writes I want to eat ice cream her daughter is absolutely tearing hair out she says well clearly mom doesn't understand what's going on here she doesn't understand. The consequences of her decision how do you know she's making the right decision okay so for me this case is about how much understanding someone needs to demonstrate to you that they have making an informed decision how how satisfied are you that they are really competent to make. This decision and there's been quite a bit of case law around this often it's around issues of adults with learning disabilities there's quite a lot of literature around consent to sexual relations in you know for people who perhaps don't meet a level of capacity. That we might feel was necessary to make such important issues and the courts have been fairly consistent that actually.

The level of understanding needs to be very much at the level which is relevant to the individual and that it cannot be set too high. So as long as a person understands the salient factors they they understand the core issues the risk of harm in this case it's not necessary for the person to comprehend every issue detail of the issue and in this case and I say you have changed set factors. But one thing that did happen was you know one point I felt like this person was being asked to sort of name all the elements of the Oro farings to kind of to make sure people absolutely knew that she understood what she was saying no to. But this is about presenting information a way in which the people can understand and not setting that bar too high and it's not a test of the concepts it's not examining them on what they understand.

But it's just giving them enough to make the decision and enough information about foreseeable consequences you might rightly consider okay well how can you actually you know if they're not going to really take part in this decision because they're really going to take part in a capacity assessment. But clearly we can't force people to have a capacity assessment but a refusal to engage might be considered relevant.

Linked to this is the idea of insight so it's not enough in summary to say that you think someone likes capacity because they don't seem to have insight into their situation the nice guidance around decision-making mental capacity is clear that if you're going to use. The phrase Insight you must clearly record what you mean by that so an example might be that you know they appear not to have insight into the hours of care that that is required in a home situation and therefore they're not able to understand. The need for a carer at home but you can't just use insight as a substitute for a detailed analysis of why someone doesn't understand the risk to them and I think there's a increasing literature around the the word insight and the fact that in many ways it's not a helpful phrase in.

The sense that it's often used by medical people in particular to highlight a sort of knowledge Gap that patients have whereas actually it's not the patient's job to have that information it's our job to provide it to them in a way in which they understand it. So wh on we'll go to the next case study so we've got a 42y old woman is diagnosed with motor neurone disease and she presents to AE taking a substantial overdose Paras on expressing a wish to die she understands her overdose is not true to she die she feels. That her life no longer has meaning or quality and she wants to have some sort of control over the manner of her death She's previously completed a do not attempt CPR recommendation with her clinical team as her illness was progressing. But her partner feels that she's just depressed so the challenge in this case is as we know and as I've probably labored.

The point is that it's obviously the right of a patient with capacity to refuse treatment if they want to some people may have been developed an advance decision to refuse treatment or had a PA attorney in place with this sort of specific aim of preventing treatment. If they if they don't want it so it can be very hard in this circumstance When taking into account everything I've said before about patient autonomy to to not comply with someone's 24 minutes, 1 second wishes in this way except the challenge in. This P case is that although the patient is obviously able to understand the consequences of not having the treat the overdose treated there is a a chance isn't there that actually she has a depressive illness and mental disorder and that might be affecting her ability to weigh up whether or not to have treatment. And I think cases of attempted suicide in a palliative care setting particularly difficult.

Because you know often it's about achieving good death for someone and at what point do you sort of interfere in that ability to of someone to sort of take matters into their own hands we do have some helpful literature to to associate and to have. I think about how to navigate this sort of situation and the first is that there's been some clinical studies looking at the desire for hastened death in people with palliative conditions and severe depression and what they found was that in when they looked at 44 people with terminal illness most of them had never s wished for death come early. But of the 10 who did all of them had evidence of severe depression and then a similar larger study found that again 200 people only roughly 10% of them had a desire to die early. But again over half of those who said they want to die early did have depression so.

The next question is got well there was a large study of 372 patients with Advanced age I think the DAT is cough but you know obviously this was this was when a was very much life em illness and what they found was that not everybody responded to anti-depressants. But the people who did respond to anti-depressants the desire for hastened death sort of rapidly diminished okay so these were people who who came they might look like they have capacity to refuse treatment and said that they want to start. But actually when you treated the depression that that wish for hastened death diminished there's also been some really good qualitative data around desire the hastened death in p p care patients and often this can be formulated as an exit plan. So means of exerting control and relief from suffering and I think it's always worth exploring with people what what support they're having and psychological qu having.

Because often in many areas the access to Clinical Psychology is very but we've got you know part of the challenge in this case we've got a decision to make very quickly and you know we we've got to think about the Mental Capacity Act. But I think fortunately we've got this sort of caveat which is around the doctrine of NE necessity so in the case where you know you you've got perhaps a depression situation that might take many weeks to treat and healthcare professionals are protected in law to do what's immediately necessary to prevent a a serious deterioration. So in this case it might be appropriate for example to think about treat this person so that we have an opportunity to assess her mental state more fully give her the support she needs.

Final case so we've got patient with Advanced MND with respiratory failure you've noticed in clinic and in the home setting the husband's always spoken for her in Clinic appointments she seems fairly withdrawn by comparison she has seemed fairly interested in talking about palliative care. But her husband's been relentlessly pursuing options for experimental treatment in China and the US you're told she plans to follow apply abroad the following week she seems scared and uncertain she's entirely physically and financially dependent on her husband for care the medical team have already decided. That she's got full capacity to make this decision we've got to think about whether that's the right thing to do so really what we're talking about here is mental capacity in vulnerable adults or people who might be in a kind of a vulnerable situation. And I think again the courts have recognized that capacity mental capacity it doesn't exist on its own.

So it's not an excuse to justify non-intervention where we think that people might be at risk of harms but often the law is a bit more complicated and people may not know how to apply it in practice I think what we're alluding to in. This case scenario is the fact there may be a coercive control situation which is now a crime at its own right but the court has also recognized that a person might lose capacity due to the overbearing influence of a spouse a relative or a friend or indeed a health care professional. So for example there was a recent case where person a woman was found to lack capacity around contraception because although she could kind of understand the information her husband's control and influence was over her and what was described as a completely unequal dynamic in. The relationship so it felt that that Dynamic was so powerful that.

Actually Mrs a was unable to make a decision of her own free will so in summary then a person might appear to have mental capacity to give true consent. But if they're under constraint or coercion or undue influence then then actually we we have got examples of that might be might not reach the threshold for mental capacity. But the challenge we've got in that is if we think right back to the beginning we the definition of under the Mental Capacity Act is that you've got to have you got to be unable to make a decision due to an impermanent or disturbance in. The mind or brain so if your inability to make a decision is actually not due to a problem with your own mind and brain. But rather the kind of overbearing influence of third party we can't actually use the Mental Capacity Act to make a best interest decision for them. So this is.

Actually a situation which you need to go to the high court to get a decision or to get the high court to decide what law for practice in this area is. But there are other criminal statutory Frameworks don't know if there's any social workers here today but we've got various and I think I've missed the Care Act of there as well. But there are various mechanisms but I what I would always do in this situation is ring up my local Friendly social worker or the safeguarding teams or fact the legal services team some time to think about what the right course of action is.

So just summing up then in terms of capacity assessments getting it right I think one of the most important things is being clear who the decision maker is and really articulating what the decision is at what point of time and thinking about whether. That can wait until the person gains capacity in terms of thinking about what that form decision looks like and what's relevant and the salient factors I think as I said before is specialist in this area and those of us are used working with people who've got a really important point to play in distilling. What those really Salient factors are and thinking about how we can translate that in a way which is most understandable to the person sadly we have to put aside information that's IR relevant to the decision such as funding and availability of PS which severely narrow potential options. And we think about who should be present.

Just finally one way that we can make sure or avoid these really tricky situations in some cases is is thinking about what we can do in advance to help people protect their decision-making rights in the future one of these is an advance decision to refuse treatment. And that gives someone at the point where they lack capacity the same rights as a competent adults standing there saying no don't give me this treatment under any circumstances and compassion in dying a website do a really good ADR as they're called template. That people can follow sometimes if I think you know someone's making ad might be considered contentious I sometimes recommend that they record a video to a company what they've done to explain what they're thinking and why they're thinking it again it's not necessary. But sometime it might help with that best interest decision-making process We've Got.

The power of attorney process which I think people are increasingly good at at getting done but I think it's important to recognize with a power of attorney process that you're delegating some of the decision-making to a loved one. So it's important to have a conversation with that person about what decisions you want them to make on your behalf we've got the respect and Advanced Care planning process which isn't legally binding. But can help encourage that forward thinking and my contact details are on the screen so please do drop me an email I and we'll keep an eye on things and and get back to you with any any questions or clarifications you want to make at. The end of the talk thank you and have a great rest of the day.

Thank you so much Caroline I I you are excellent at at getting across really complex material and I guess the thing for me and MND is is the time pressures and also the the pressures of risk. But talking to you it all feels understandable and and doable please do put any questions in the in the chat I was thinking about the role of the MDT in managing this and also what can be difficult for for family members you talked about sort of we've all. Actually got the right to make decisions which those around us might my question but supporting the MDT and supporting nearest and dearest to to accept and and respect somebody's decision yeah thank you it's a bit weird because I in case it's not obvious. I pre-recorded that that so I came in for the end of it.

But yeah I mean I think without wishing to sort of typ cast or people put people in boxes I think often we get a sense in advance don't we in an MDT about those situations which might turn out to be a bit trickier for whatever reason. And I think probably the most important thing is setting the groundwork around those decisions so that you don't get the 11th Hour Friday afternoon before a bank holiday weekend crisis point when actually some of the some of the issues were foreseeable I think. I feel like I always come on with these talks and trash Medics but I think you know it always seems to be that you know there's something's been escalated to a consultant to make a decision about addition charge or a nutritional decision and. And often there's been Pages really beautiful assessment by a speech and language therapist or a physio or an OT but.

Actually that hasn't really been pulled together and taken into account so I think perhaps Yeah the more we can do as as outpatient mdts or specialist MND mdts to make sure that perhaps if these people end up on Hospital WS or in other settings where. That isn't as easily accessible that we've kind of done the ground work and made it clear that perhaps there's a consensus around for example SS cognition or their family situation whatever whatever that might be thank you.

I've got a kind of a question if that's okay so it's it's not really a question UND do my video as well so you can see what I'm doing oh I can't do my video that's fine I've got a patient oh yes I can I've got a patient who has capacity. And we've talked about PEG multiple times he's changed his mind on and off about whether he wants it now he's very adamant I saw him this morning and he's very keen to die his his phrase was was that this morning. Now he's very early on in his diagnosis so as a professional I'm finding it really tricky to say actually not having a PEG isn't G to make that dying process happen sooner actually it's probably going to make that last little bit horrible. But he has capacity he's aware of the risk I just if you had any advice on how we manage that as professionals because.

We know what that end is like and he does in terms of kind of his management yeah it's a really tricky one isn't it and and yeah it feels like I have those conversations all the time. Now and you really don't want to be in a position where you're sort of feeling like you're trying to pressurize someone I think as a general war of thil and I'm sure you do this. But I think the most important thing is just to not feel like every not to inadvertently create the situation where the person feels that every time someone talks about a PEG they're being asked to make a decision because it's that information giving bit that's. So important so I mean I my background is in palliative care so I would tend to take that approach but when people say for example well I just want to die or you know I'd say. Okay you know about the dying process of.

The things that worry you don't worry you what are you most sort of worried about so you sort of you're wanting to find out a bit more information from them and then I would normally sort of ask permission and sort of say would it be. Okay if we just spoke a little bit more detail about what that might involve for you based on what you've told me and then if they say well you know I really don't want to be in any pain or discomfort which is what often a lot of people say or they might say. I don't want to be in hospital you could say yeah well actually that's really important it's important we think about how we give you the right medications and what I sometimes say to people is you know you probably haven't maybe haven't thought about it. This way but.

Actually having a tube is is a way for us to give you medications without having to use needles and and what have you and it can mean that people stay at home for longer and it can mean that carers don't have as much of a burden or. You don't have as many people coming into the house so what I try and do is kind of maybe reorientate it around what they've identified their goals to be. Okay because we might we often thr nutrition decisions around you know quantity of Life which which isn't desirable for body so yeah I think it's just understanding what their goals are and then seeing how you can kind of make sure they've got all. The right information around that but yeah I think asking permission and if they've already said something like you know I just want to die it sounds awful to say. But it is a gift to us as healthcare professionals.

Because they're inviting a conversation about really difficult things that not everyone wants to go to you've then got your in to say well let's you know let's just talk a little bit more about what that might involve. Okay thank you thanks Kelly thanks Caroline Maria you put a question in the chat I don't want to put you on the spot. But would you like to hello would you like to to ask your question you're on mute there sorry about that hi everyone yes I would be interested in having your views on for example these cases where the patient asks a type of food. That may pose her a a talking risk.

Thank you Maria are you speeching language background or different background no I'm a social worker and sard Lead at the hospice phis I'm wondering if we've got any speech and language therapists on the call because in my experience they're they're brilliant at these sorts of situations which of course happens all. The time is people say well you know I'm not putting thicken it in my red wine or I'm going to have those M teasers and and all they'll be variation in my trust we've got a sort of eating and drinking with accepted risk sort of paperwork. So often there's quite a s protocol approach to that so I think you know in general it's a big part I know it's a big part of what a lot of speech and language therapists do is discussing about those risks what's acceptable what's not acceptable for them. I should say it's a sort of sight sideline.

But oh looks we' got Amanda's good someone's coming to save me we let come in a second but the food and drink doesn't constitute a treatment under the Mental Capacity Act. So a tube feed would a PEG feed would but normal food and drink so I can't really think of a situation but if someone did try and create an advance decision to refuse treatment to say don't spoon me food for example they wouldn't be able to do. That because it's not actually counted as a as a as a medical treatment as such but of course we do do have people who choose to eat you know things of the wrong consistency all the time and choke and what have you and some people say well. Actually I accept that and I prefer that I think it is more tricky when people lack capacity and I know sometimes with fronto Tempo dementia.

We get sort of food cramming behaviors which must be absolutely terrifying as a carer but actually short of you know locking away all that sort of food it's very difficult to to sort of physically stop someone or restrain someone from doing that I'm feeling a bit relieved. Because we've got a couple of speech and AG therapist saying I agree in the chat but I don't know if any of them want to come in and add anything that I've missed on that yeah i' just like to say that when we we're very used to speech. And language therapists to talking with patients about weighing up the balance of risk as it were risk to their health and wellbeing as opposed to risk to their well-being and quality of life and we do we have a system called edar eating and drinking at acknowledged risk where.

We specifically look at those that that Balancing Act looking at at what somebody wants to eat and what will be safest for them to eat and one of the issues that we often talk about is the risk of aspiration and possibly developing a chest infection which is. If it leads to death and it may or may not but if it leads to death is a very different way of dying both for the individual concerned and for anybody who is with them at the time compared with a rather more traumatic death. That might be caused by choking so all that detail is what goes into that discussion thanks am and I guess sorry can I just add something we always involve H speech and language therapists when we're dealing with this kind of complexities and and. The the for me the main difficulty is when all these conversations have taken place.

The patient still wants to have that choice of f they're not any issues around mental capacity and or executive Capac Capac it and. But that person needs the Assistance or the carers sorry I'm just reading the chat at the same time so and yeah so so is my understanding is that the carers and can refuse ER to provide the substance that can potentially precipitate the death. But I'm I'm just in interested to to see whether you've been in that situation at that point and the Dilemma the ethical dilemma restricting someone's Liberty to protect their life I believe that to be the case when I looked into that it was a little while ago. Now but I understand that carers have human rights as well and if they believe and it is being assessed as likely that then when they as it were spoon something into somebody's mouth that that could lead to an immediate and traumatic death there. And.

Then that they have the right to say no I'm sorry I'm not prepared to do that and and that can be both in the home or in a home a residential home. So that has to be brought into the whole discussion and and be a part of it thank you yeah it's such a tricky area isn't it you just feel for you know both people you can imagine in a care of situation and of course it's not just eating. And drinking is it it's people who perhaps continue to drive or you know decide to walk without the right you know required AIDS and fall and you know chose not chose NIV there's there's. So much but I think in the past I can't remember the exact case law but there was a case around you know the extent to which people can expect to be helped or you know can be deprived or restrained by an external person. I think.

The courts have sort of fail sorry forgive me for sort of butchering my interpretation of the law but you know that person with MND who can't feed themselves it's the illness that's restricting them not the carer. So you know as as Amanda said you know the carer is their own person who's who's allowed to use their own choice about whether or not they feed someone obviously you know you don't want to be in the Realms of neglect where they're not feeding them at all. But in terms of making that decision about what treat what sort of food to give the patient themselves can't demand to receive a sort you know a certain sort of food from that person a prison demands to B suck boiled sweets even if they kill him yeah. And salt may be involved in car training as well yeah that's interesting there's a burden on.

The car person assisting them to feel they should intervene if a patient is choking even if we have paperwork in place say they don't want intervention and they expect this is a risk. So I recently been involved in a a policy paper around do not resuscitate sort recommendation doing D our orders respect whatever they are in your area and and there's been a number of Highly sort of publicized cases where in a care home an ambulance wasn't called. When for example a resident with a DNR choked on a cheese sandwich in one in one occasion and there's have been other choking episodes where ambulance haven't been called and I think just while we're on the subject it's important to recognize that a DNACPR form in itself wouldn't prevent intervention for choking it may be. That in the example that Erin's given that there was paperwork in place to explicitly say that they didn't want intervention for choking.

But in most circumstances even if someone had endof life documentation and a DNACPR form saying you know I want to die at home I don't want CPR unless it was explicitly outlined not to intervene for choking there would be an expectation that Care Professionals in particular did intervene in. That case and that's because you know DNACPR is particularly around cardiopul resuscitation this is around you know your heart stopping rather than an airway issue that that may lead on to Cardiac Arrest thank you. So Athena was saying there's a legal precedent following the case of JJ for care companies to refuse to to feed or support people who choose to risk feed and then Simon has put a question in around moving and handling Simon do you again to put. You on the spot do you want to ask your question on camera right yeah.

So I'm working with a lady she was diagnosed with MND a couple of years ago she has a care package plus a supportive husband at home she's really reluctant to move to hoisting she's currently using a a Sara steady which is a type of stand Aid. And is essentially moved at risk by the husband the carers are happy to continue with this we as an MDT have been trying to gently encourage the client to see the risk to her self and to the carers. But it's a real sort of it's an ongoing it's a real battle to to our feeling is that she's ready she she should be hoisted it's the safest most dignified way which we've we tried to put across. But at the moment she's pretty steadfast in wanting to continue so it's just my question is really around what responsibility do we have to the care to the husband and to.

The Care Agency even though they're complicit in this risky Behavior I don't have any concerns with regards to this lady's capacity to make this decision than yeah it's a tricky one isn't it and again it's this is probably where we need the colleague who just on for with. The social worker background because think this this sits in you know the territory really isn't it of people who choose to or for whatever reason self- neglect I'm not saying this lady is necessarily self- neglecting. But it's that same sort of dynamic isn't it of someone who's who's perhaps not going along with what we might consider to be the best course of action. But as you rightly say if you don't have any reason to doubt her capacity this does sit in that realm of unwise decisions although I'm really interested I'm going to Google once we finish on the call around this case of JJ because as. We know.

We don't live in this sort of perfect Eco legal bubble where you know if it's legal we do one thing and if it's not legal we do something else actually we have got to think about these other players and you know the role. That care agencies for example play in either enabling or preventing certain behaviors is really important and they might be quite different from what we might understand to be the sort of the best Legal C faction I'm not saying they behave in a legal way. But you know they have their own internal codes of conduct which might not necessarily be what we would consider to be you know necessarily the best approach because they've got to obviously protect their own staff from certain activities. So I don't know if anyone else has got more experience with this in a kind of Social Work context.

But that that would be my sort of take on it thank you I was just if there's no one coming back on that I just wanted to pick up on.

Just to clarify Amanda's comment around the choking although DNR does not apply to reversible risks and an ADRT re choking might be placed there are still car as human rights Amanda sorry do you want to just clarify I actually changed it and put are. There still car as you because I'm I'm not absolutely 100% sure what happens in that case and I just wanted other people's opinions if you've got an ad in place that specifically specifies that they don't want somebody to act to help when there's a an obstructive choking incident. And the carer is sitting there knowing that they can do something and isn't allowed to do it does the carer have human rights and say no I I I don't have to sit there.

And watch you die while I could do something to stop it or you know it's very difficult in a care situation it's not like a medical situation where you have a whole team to support that carer might be on their own with that person knowing. That they're just letting them die yeah so so an advance decision to refuse treatment is tricky because it is you know a legal you know a legal imperative if you like to to not give treatment I suppose a couple of things to consider. Firstly what would what would treatment be in this context you know would removing a bonus of food from the mouth would people call that medical treatment I'm not sure they would you know potentially if you're doing HCK maneuver that might be considered medical treatment as far as I'm aware. And I'm if anyone's hot on.

The case feel free to be corrected I don't think there's ever been a prosecution certainly not of a kind of lay person of someone for not for breaching a an ADRT. So I think it would be hugely unlikely for there to be any sort of legal redress for an individual who you know in a very crisis very emergency situation took took that measure out of compassion or just panicked. So and that's not legal advice but it's just sort of think think through okay well what would the consequences be the other thing about an advance decision to refuse treatment and one of the criticism of them is that they have to be signed witnessed. And sort of everyone needs to be happy that they apply to the situation in question so whether or not that bit of paper would be by the bedside and everyone was certain that it was the right action to take IE to follow.

The ADRT to not intervene you would also and this I think is in the code of practice for the capacity act if you're not 100% sure certain that the ADRT covers the choking situation you you are almost legally obliged to act in that circumstance to say well. I wasn't sure it's a life life-threatening situation I wasn't 100% sure that the ADRT applied in this situation therefore I took the action that was immediately necessary to prevent a life-threatening deterioration and then once the person's you know improved a little bit will then make sure. The paperwork's correct so so that's probably the approach I take with an ADRT a DNACPR or an advanced care plan or a respect form all of those forms of documentation are not legally binding. So you could in that situation use your if you're a clinician your clinical judgment to intervene so that's I don't want say more defensible because that sounds a bit too legalistic.

But you know you wouldn't you certainly wouldn't face any form of legal action for taking taking that action if you felt that actually the circumstances in which you were interpreting it changed I've slightly swerved I've been not that I am a lawyer. But i' SL slightly been a bit laery about swerving the question of what do you do if it's a solid cast iron do not intervene. But I suppose you know the carer does have the ability to you know to leave the room and the reason all this law exists is around the right of bodily Integrity it's around the right of that one person to make a decision around their own body. And that that's so much aent part of the legislation that I don't think it would ever dis be displaced by what a carer thought you know about about them bit finding themselves in that situation because this is all about you know the person as.

We know you know with MND there's so many choices taken away from you and there's so many parts of your life that you don't have control over actually to be able to have a little bit of control over a little bit of it is is really important as well isn't it thank. You from the number of articles that people are dropping in the chat there's a disabled prisoner who cannot feed himself it's it's a reflection isn't it of how complex and how frequently these cases are coming up for you know a a judge to look through. The complexities and the and the nuances of them a lot about about risk and toleration of risk I love car what you said actually s of conversations as soon as possible might be the the best approach in this which brings me on to there's a an act webinar towards.

The end of of February which I think is an excellent framework for introducing those conversations and thinking about what's important Sam's put in a link to an evaluation please do let us know this will be go into our planning for 2026. But if this has sort of wetted your appetite for more you know examination of cases in this in this area please let us know probably got time for any more quick ones otherwise Caroline you you've kindly put your contact details on the last Slide. The webinar will be available in about 10 days and so thank you all very much for your participation and your time oh V's got one question TRD that's all right. So sorry don't mean to be hugging it but if nobody else has one I think the situation that we often find difficulties particularly when somebody remains living in community as they usually do with MND.

And they are clearly showing some signs of developing FTD impulsivity intolerance of situations becoming perhaps agitated or aggressive in certain situations and the lady I'm thinking of that I treated last year also had some language involvement which which in a way was a help to me. Because it showed that there were some cogn nitive difficulties but because she was so definite in the way she communicated things even when she had language as well as speech impairment she was still very very assertive in the way she she communicated people assumed. That she therefore had capacity and I I I think it was very clear that she was showing frontal signs but to get agreement amongst people who are not familiar with this kind of situ situation is is very difficult and and causes a lot of stress. I think for the person for the family and and for the MDT yeah and I think this is probably where.

We can learn a lot from our colleagues who who do more work in dementia can't we I mean I used to work in Cambridge and I think the phrase isn't it's like confabulating when people with cognitive impairment are able to comp compensate quite well for their deficits. And so we used to have these sort of Cambridge not with em and you know Cambridge professors who were able to really hold court and and really dominate a conversation about what had been their academic interest and people 58 minutes, 1 second were really terrified. Because actually you know at home they were leaving the gas on and the front door open and all the rest of it but they were very very good at having that commanding presence to to sort of deflect if you like from what was. What was really going on.

And I don't know whether it's conscious or unconscious or perhaps what we' all want to do again around preserving our sense of identity if we were living with with that. But it yeah you're right it's it's very challenging and I think it's back to my original Point really with s around that early recognition and the MDT I don't want to sort of suggest you're conspiring. But comparing notes and well I've noticed this and I've noticed that rather than as individual practitioners feeling quite challenged in that situation and thinking oh perhaps I just won't go there it feels too difficult feels too tricky. But with all those situations there is often as we know a family member or several family members or a neighbor or a friend who's who's really quite worried about the person. So is a I guess as well about being a bit Brave to tackle some of those issues.

But in a perhaps in more of a team way rather than as say individually feeling like we've got to manage all that risk ourselves thank you frontal low Paradox. Okay.

Thank you everybody have a good rest of the day thank you especially Caroline thanks everyone bye.