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“If You Are Not A Patient They Like, Then You Have Capacity”

“If you are not a patient they like, then you have capacity”: Exploring Mental Health Patient and Survivor Experiences of being told “You Have the Capacity to End Your Life”


[Content warning: Mention of suicide, self-harm, iatrogenic harm, psychiatric abuse]


Please note: While I use the term ‘personality disorder’ throughout, I am in no way endorsing or agreeing with the PD construct. I do not believe ‘personality disorder’ is a valid diagnosis, and stand in fierce opposition to its clinical use. Please see my position statement for further information.


Acknowledgement


So often clinicians and researchers conduct studies which look at how mental health patients affect staff; how staff feel about patient behaviour; how staff assume patients feel; what conclusions they can draw about us, without us… In this study, Mad people, neurodivergent people, and people with experience of mental health services have come together to collectively share their views and experiences of staff behaviour and how this has affected them. This felt somewhat empowering. I am forever grateful for the existence of Mad and survivor communities, and for those in my community who placed their trust in me by sharing their deeply painful and difficult experiences for this study.


I would also like to thank Ellie, and Recovery in the Bin, for allowing me to use their images and data.


Summary


Many mental health patients and survivors of services are aware of the phenomenon of being told they “have the capacity to choose to end their life”, or similar, when asking for help while suicidal. This phenomenon has been widely discussed in online spaces and in peer groups for years, but currently there is no published research into why this happens, or how it affects people and their clinical outcomes. For this study, an online questionnaire was shared on Twitter and Facebook in December 2021, seeking current or former mental health patients who had encountered this phenomenon, to explore their experiences. There were 211 valid responses. The majority of respondents were cis gendered women (78%) aged 18-29 (42%), with a diagnosis of mood disorder (72%) and/or personality disorder (63%). Most of the respondents (48%) had experienced this phenomenon 1-4 times, however, a large minority (22%) had experienced this 10+ times, with some commenting that it had occurred dozens or even hundreds of times. People were almost exclusively explicitly asking for help when they were told this, not refusing help. Respondents reported that it most commonly occurred during a crisis team interaction with either a crisis team support worker or nurse, or an interaction with community or liaison psychiatrists. Often people were told they had capacity over the phone, with no face-to-face assessment, and this decision appeared to roll over for months or years in people’s mental health notes, with no re-assessment. A significant proportion of respondents (83%) stated that following being told they had capacity, they subsequently had appropriate care withheld from them. This included withdrawal of care already in place, denial of crisis care, and instructions from mental health services for other services (i.e. police, A&E, paramedics) to withhold appropriate care. 99% of respondents who experienced this stated that they did not consent to an intervention which removed their care, and 100% reported that having care withheld had placed them at risk.


The questionnaire explored the emotional effect of hearing this phrase, and the consequences of having care withheld. Overall, the phrase “you have the capacity to end your life”, was experienced negatively. Respondents frequently described increased hopelessness, worthlessness, and suicidal feelings. It was not considered helpful, empowering, or compassionate, rather, it was experienced as abusive, traumatising and/or violent by many patients/survivors. A significant percentage of respondents (78%) stated that it contributed to a subsequent suicide attempt. Many people interpreted the phrase as professional permission or even active encouragement to end their lives. Being told they had capacity frequently caused people to stop reaching out when suicidal and many described a partial or complete loss of trust in mental health services.


While the questionnaire was focused on patient experience, common themes in staff behaviour were seen in the responses. The respondents indicated that staff commonly used the “presumption” of capacity as a reason to withhold capacity assessments, then used the presumed, unassessed capacity as a reason to withhold care. Comments from staff directed at patients seem to indicate that staff often appear to believe capacitous patients are either not owed care or cannot be provided with care. Patients with assessed or presumed capacity were frequently told that suicide was their choice and if that’s what they wanted to do, that was ok (eg. it was likened to choosing to smoke or making poor lifestyle choices). Respondents described situations where staff implied or overtly stated that nothing can be done to support people who are suicidal. Further to this, some staff appeared to conflate “having capacity” with “not experiencing psychosis”. People approaching services for support while suicidal, who were not experiencing psychosis, were commonly considered to be in full control of their actions, and thus able to freely choose between ending their lives or not ending their lives, purely on this basis. A large proportion of responses indicated there is a widely held belief within mental health services that if someone makes repeat suicide attempts but does not die, they are not genuinely suicidal, and are likely being manipulative. Comments which indicate to patients that suicide is their choice, appear to disbelieve the suicidal intent of the patient, and attempt to call the patient’s bluff. The word “responsible” arose frequently, with staff appearing to believe that reliance on services during suicidal crises reduces a persons responsibility for their own safety, and as such, withholding care during these times encourages people to keep themselves safe. A significant majority of respondents (96%) disagreed with this belief.


Overall, the phenomenon of people being told they “have the capacity to end their life” is harmful, widespread, and not confined to mental health staff. Indeed, respondents reported the same phrases and behaviours in A&E staff, police, GPs, social workers, care workers, emergency service call handlers, and paramedics. More research needs to be done looking into this phenomenon. This could include staff reasoning behind using this phrase; how widespread this phenomenon is; the legality of this practice, including cases where people have subsequently died after being told this; the subgroups of patients this is directed at and why; and how this can be combated in practice both by patients/family, and professionals.


Introduction


There is little in the way of published literature concerning the use and understanding of the Mental Capacity Act 2005 (MCA) within mental health services. Regarding clinical settings specifically, the MCA’s provisions were devised, written and passed into law with the explicit intention of protecting patients from unwarranted medical paternalism and coercive/restrictive practices. Along with protection for people who lack decisional capacity, the MCA enshrines the right of capacitous adults to make decisions about their medical and social care, including decisions others may consider poor, unwise, or unhealthy. This empowering ethos was (ostensibly) achieved via the following overarching principles (s1) [1]:


1. “The following principles apply for the purposes of this Act

2. A person must be assumed to have capacity unless it is established that he lacks capacity

3. A person is not to be treated as unable to make a decision unless all practicable steps to help him to do so have been taken without success.

4. A person is not to be treated as unable to make a decision merely because he makes an unwise decision.

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.

6. Before the act is done, or decision made, regard must be had to whether the purpose for which it is needed can be as effectively achieved in a way that is less restrictive of the person’s rights and freedom of action.”


However, in the time since the Act came into force (2007) it has become concerningly apparent that, in practice, the ideals of the MCA are not necessarily being realised. Several audits into the clinical use of the MCA have found wide variation regarding the understanding and clinical implementation of these principles by clinicians, and the need for greater general understanding of the Act within healthcare teams [2-5]. In 2014 the House of Lords reported widespread misunderstanding of the MCA within health and social care services. In particular, the Act’s first principle (section 1(2)), was found to be widely misused among a variety of health and social care professionals, to justify not assessing capacity and, in some cases, as a reason to withhold care from vulnerable adults [6]. This phenomenon was also noted by the 2018 Independent Review of the Mental Health Act 1983, which also went on to state “We heard examples of people in distress being told that nothing could be done because “you have capacity, and it’s your choice what you do”.” [7].


Anecdotal evidence from social media suggests such misuse of the MCA is particularly prevalent in the experiences of people accessing NHS mental health crisis services when suicidal. Such experiences include acutely suicidal patients being told “you have the capacity to choose to end your life”, “you have capacity so we can’t help you” and similar [8]. Articles, blogs and social media discussions by mental health activists and people under the care of NHS mental health services have been calling attention to this phenomenon for a number of years [9-13], with hashtags including #YouHaveCapacity, #CrisisTeamFail and #HarmedByServices used to share such experiences online. The use of the MCA to withhold care from suicidal people is such common knowledge, there are even memes circulating online which use dark humour to highlight the issue.

Three memes. The first shows a hand drawn graph titled "what gives people feelings of power". "Money" and "status" are marked on the graph, below them, the last group is "telling suicidal people they have capacity". The second meme has four picture boxes like a comic strip. The first picture shows a hand reaching out of water, which is captioned "reaching out for help when suicidal". The next picture shows a second hand reaching towards the first, as if to help. This second hand is captioned "crisis team". The next picture shows the second hand high fiving the first, it is captioned "you have the capacity to kill yourself". The next picture shows the first hand sinking below the water. The final meme is a still shot from spongebob squarepants which shows spongebobs arm flicking through a filing cabinet. It is captioned "crisis team workers choosing what to say when you ring feeling suicidal". 10 different files are labelled including one which says "you have the capacity to kill yourself".
Figure 1: "You have capacity" memes

In June 2019, the user-led mental health activist collective, Recovery in the Bin, ran a series of online polls on Twitter on this subject. One asked if people accessing mental health services had ever been told “you have the capacity to end your life” (or similar) when suicidal. Out of a total of 261 mental health patients/survivors who responded, 72% had experienced this phenomenon [14]. The next poll asked crisis team and psychiatric liaison clinicians if they had ever said this phrase, or heard it said in practice. 10% of 120 respondents admitted they had said this to a patient, while 33% had witnessed a colleague say it [15]. Anecdotal evidence suggests that people with a diagnosis of personality disorder are more likely to be told they “have capacity” when suicidal; the RITB polls also suggest this to be the case.

1st twitter poll: Have you ever sought help from NHS mental health services when suicidal and been told you 'have capacity' to make the decision to kill yourself (or words to that effect)? Responses: Yes (PD dx/traits) 53.3%; Yes (no PD dx/traits) 18.8%; No (PD dx/traits) 11.1%; No (no PD dx/traits) 16.9%; 261 votes. 2nd twitter poll: People working in mental health crisis teams or psych liaison, have you ever (1) told a suicidal person actively seeking help that they "have capacity" to kill themselves (or words to that effect) or (2) seen a colleague do so? Responses: Yes I have said this 10%; Yes I saw colleague say it 30.8%; No to both 59.2%; 120 votes.
Figure 2: Recovery in the Bin Twitter polls [14,15]

Conversations about misuse and misunderstanding of the MCA in relation to suicide are finally starting to surface in professional circles, with an acknowledgement that this phenomenon is actually occurring, and is not acceptable clinical practice. At the RCPsych Congress in June 2021, Expert by Experience, Ellie, discussed her experience of being told by crisis services that she had the capacity to choose to end her life, and the emotional effects of hearing this. In speaking from her own experience, and the experience of peers, Ellie presented the potential long and short term impacts of having crisis care withheld due to “having capacity”. Along with increased long and short term risk of suicide and self-harm, other risks, such as deterrence from seeking help, loss of trust in services, and increased distress, were also discussed [16]. Alongside Ellie, several people in clinical and legal positions also spoke about this phenomenon in relation to clinical practice and capacity law [17,18].

Short term impact: increased likelihood of suicide, increased risk of self-harm and death, confusion - conflicting messages, helpless and powerless, loss of autonomy: own decisions about care needs undermined, increased distress, prolonged relapse, increased use of other emergency services. Long term impacts: increased likelihood of suicide, increased risk of self-harm and death, deterred from seeking help in future relapse, loss of trust in mental health professionals/services, loss of confidence in ability to identify own needs, reduced resilience: less will to keep trying.
Figure 3: Short and long term impacts. From: You have Capacity to decide to end your Life: A Patient Perspective [16].

Despite this growing acknowledgement, the phenomenon has received very little attention within academic literature. Other than a recent paper by Dr Chloe Beale, which recognises its existence [19], a cursory literature search produced no published works concerning the withholding of crisis care on the basis of the statutory presumption of capacity (s1(2)), or the use of decisional capacity as a reason to withhold care from patients requesting support. Accordingly, very little is known about why and how this misuse occurs in clinical practice, or the impact of such on patient welfare, safety and clinical outcomes.


Methods:


An online questionnaire was shared on Twitter and Facebook between 30/11/21 - 31/12/21. To take part, the respondents needed to be a current or former NHS mental health patient in England or Wales; aged 18+; and have experienced being told they “had capacity” while suicidal and/or had care withheld due to “having capacity” while suicidal. The questionnaire included a mixture of open and closed questions, and collected responses from 271 people. 57 submissions were incomplete in all but the consent page and as such were discounted. Three respondents did not meet the inclusion criteria, but completed the questionnaire regardless, and as such, their responses were removed. This left 211 valid responses.


Results:


The vast majority of the respondents were cis gendered women (78%); non-binary people were the next largest group (8%); then cis men (5%). The majority of the respondents were aged between 18-29 years old (42%), with the prevalence declining as age increased. This could be related to the demographics of the patients targeted with the phrase “you have the capacity to end your life”; a reflection of the patient groups most commonly seeking help for suicidal feelings; or it could merely reflect the population on the online platforms where the questionnaire was shared.

Two graphs. The first is labelled age and shows the age groups of the respondents. The largest group is 18-29 years, the 30-39 years, then 40-49 years, then 50-59 years, then 60+ years. The next graph shows gender. The largest group by far is cis women, then non-binary people, then cis men, then "prefer not to say", then "other", then trans men, then trans women, then agender.
Figure 4: Age and gender of respondents

Mood disorders were the most common diagnosis (72%), followed by personality disorder (63%), and then trauma disorders (51%). While personality disorder is heavily associated with “having capacity”, only 3% of respondents had a stand alone diagnosis of personality disorder, with no other diagnosis. 97% of those diagnosed with PD had between one and six other diagnoses, the majority having three other diagnoses; most commonly mood disorders (51%), anxiety disorders (48%), and trauma disorders (42%).

Graph displaying diagnoses of respondents. Mood disorder is the largest group, closely followed by personality disorder, then trauma disorder, anxiety disorder, eating disorder, ASD, dissociative disorder, psychotic disorder, ADHD, Other, learning disability, and finally, no diagnosis.
Figure 5: Diagnoses of respondents

The majority of respondents had experienced being told they “had the capacity to end their life” between 1-4 times (48%), with the next largest group having experienced this 10+ times (22%). Some people commented that they could recall dozens or even hundreds of occurrences, with several people stating that this was now said to them on every single interaction they had with services, which could be multiple times a week.

Graph showing number of times each respondent had been told they had the capacity to end their life. The largest group was 1-4 times, then 10+ times, then 5-9 times, then "unsure", and finally, "prefer not to say".
Figure 6: Number of times each respondent experienced the phenomenon

In terms of which services people were seeking help from when they were told this, 15 different services were identified by respondents. The most prominent were crisis and home treatment teams (60%), community mental health services (39%), and psychiatric liaison teams (32%). 16 different types of professionals were identified as having said “you have the capacity to end your life”, which included a number of non-mental health and non-medical professionals, such as police, GPs, A&E staff, and social workers. Many respondents described mental health professionals as directing other professionals to agree with this assessment, or instructing them of the capacity decision, rather than them stating this independently. The most commonly reported professionals were mental health nurses (57%), crisis team support workers (57%), and psychiatrists (41%). 31% of respondents reported discovering they had been assessed as “having the capacity to end their life” either from their notes, or from a family member/friend. Included within this group was a small percentage of people with no idea who had made this assessment, or where and when it had taken place.

Two graphs, the first titled "which services were involved". The largest group is crisis team, then community mental health team, then liaison team, then mental health hospital, then care co-ordination, then NHS therapist, then A&E, then s.136 suite, then specialist service, then crisis house, then GP, then general hospital, private care home, police, and finally, NHS 111. The second graph is titled "which professionals were involved". The first two groups are tied, mental health nurse and crisis team worker, the next group is psychiatrist, then support worker, then clinical psychologist, AMHP, HCA, social worker, OT, "unsure", psychotherapist, police, GP, A&E staff, paramedic, and finally NHS helpline.
Figure 7: Which services and which professionals were involved?

In relation to being told they had the capacity to end their lives:

  • 100% of respondents disagreed that it positively contributed to their recovery from crisis

  • 100% of respondents disagreed that it was a compassionate response from mental health services

  • 99.5% of respondents agreed that their relationship with mental health services had been negatively affected as a result

  • 97% of respondents agreed that it decreased their trust in mental health services

  • 97% of respondents disagreed that it was an appropriate response to the situation

  • 96% of respondents disagreed that it helped them retain responsibility for themselves

  • 96% of respondents agreed that it increased their feelings of hopelessness

  • 95% of respondents agreed that it made them feel worthless

  • 95% of respondents disagreed that it made them feel positive or in control

  • 94% of respondents agreed that it increased their suicidal feelings

  • 84% of respondents agreed that it made them feel powerless

  • 78% of respondents agreed that it subsequently contributed to a suicide attempt

Following being told they had capacity, 83% of respondents stated that they subsequently had care withheld from them. In relation to the withholding of care:

  • 100% of respondents agreed that it put them at risk

  • 99% of respondents disagreed that the decision was implemented with their consent

  • 93% of respondents disagreed that this decision was explained to them in any way

Throughout the questionnaire, there were several open comments sections, asking respondents if they had anything else they wished to express. In total there were 299 comments left. The comments were read, categorised and broken down into three overall themes: 1) How people were affected by being told they had capacity; 2) What this phenomenon looks like in practice; and 3) How this phenomenon is part of wider problems in services. These are broken down below, and include some direct quotes from the respondents which were particularly poignant and powerful.


Theme One: How it affects people


“They have destroyed any trust I had, have made me lose any belief in some kind of safety net for when things get too bad, and I do not believe they will ever gain my trust again.”


“I will never seek crisis support again as it is too soul destroying”


“I just want to be met with compassion when I tell people I want to be dead, even if it’s the third time that week.”


“Being told I have the capacity to commit suicide just reinforced the fact I didn’t deserve to live or recover and that I wasn’t worthy of any help or support.”


“I think they don't care whether I live or die. In fact, more accurately, I think they would prefer that I do die so I don't bother them anymore.”


“I’ve never been so hurt or torn down by people who are supposed to help”


“They’ve destroyed what was left of my life. They make me want to kill myself. I don’t think I can ever get over their cruelty and neglect. I don’t think I will survive and they will be a factor in my death.”


“[T]he trauma I have been caused as a result of them withholding care is immense. I will not subject myself to this abuse any longer and now do not engage with them at all. There is no help for people like me."


“I now won't contact crisis team, I believe I'm more likely to kill myself after an interaction with them due to their cruelty. I'm safer not speaking to them.”


“I interpreted this statement as "professional permission" to end my life, which subsequently led to a suicide attempt being made.”


The most frequent comment left in the open comments section described how the respondents were affected by being told they “had capacity” when seeking help while suicidal. 88% indicated that they had either lost all trust in mental health services, or that their trust had been damaged and they were attempting to restore it. 65% stated that after their experiences, they would either no longer contact mental health services at all for support when in need, or they would no longer contact a specific service, such as the crisis team. Respondents repeated that this lack of contact with services did not mean they were “better” or “recovered” but that due to this negative response, they couldn’t bear to contact services again, and as such, now suffer alone. 57% stated that when seeking support for suicidal thoughts, a compassionate and understanding response would have been helpful, whereas being told they “had the capacity to end their lives” was neither understanding nor compassionate, therefore, was not helpful. In fact, 45% of respondents directly stated that this response was abusive and/or traumatising. Several respondents commented that it was “violence”. 22% of respondents indicated that they had internalised their negative experiences with mental health services, which had affected their sense of self, and contributed to them feeling hopeless, defeated, and as if they did not deserve care. A further 20% indicated that being told they “had the capacity to end their lives”, felt like being given permission, or even actively encouraged to go ahead with a suicide attempt, and for some, directly led to an attempt to end their lives.


Theme Two: What it looks like in practice


“Responsible clinician […] said I had capacity to kill myself if I wanted to, even on the ward, and they couldn’t stop me because it was my choice to die. While sectioned.”


“I was told that because I had capacity I couldn’t access help”


“The lady from crisis team said she couldn’t help because I had capacity and I had to take responsibility”


“I was told “you are an adult and have capacity there is nothing we can do”.”


“They've also used saying I have capacity as a way to avoid admitting me when I’ve needed admitting into hospital for safety.”


“When psych liaison came, they told me during their assessment that I "had capacity to make decisions for myself and therefore should take responsibility for my suicidality".


“[I was told] ‘we know you’re a risky young lady and chances are you will kill yourself but you’re an adult you have capacity so if you want to kill yourself go ahead’”


“[W]hen I was discharged from a section 2 they wrote in my notes that long term risk of suicide is high and that I was likely to successfully kill myself eventually but there was nothing they could do about it and “patient has been made aware of this”.”


“I was taken into a meeting while an inpatient in an acute psych ward. It was a multidisciplinary meeting with multiple teams there, I was told my risk of death was too high and imminent now, but as I had capacity nothing could be done, and that I'd likely die soon, so they were withdrawing treatment, stopping my referrals to specialist units and putting me on "palliative mental health care" until I inevitably took my own life.”


The second most common type of comment in the open comments section described how the term “you have the capacity to end your life” was used by mental health professionals. 71% of the respondents stated that they had been told suicide was their choice and/or they were responsible for not killing themselves due to “having capacity”. Some even indicated that this was said to them while they were detained under the Mental Health Act. 61% described how “having capacity” meant that mental health professionals felt they “couldn’t” offer help, or that their service did not support those who “had capacity”, even when the person was actively asking for help. 61% described how services did not believe them when they reported feeling suicidal, or told them following suicide attempts that if they were genuinely suicidal they would not have survived. In this context, “you have capacity” was understood as professionals calling their bluff, because they didn’t believe people would follow through with their stated suicide plans. 22% felt that the phrase was used to block hospital admission, including having heard overt statements from clinicians to this effect. 18% described how mental health professionals seemed to conflate “having capacity” with “not experiencing psychosis”, and that if they presented to services for help during crisis but were not obviously psychotic, they were refused support. 6% stated that after being told they “had the capacity” to end their lives, physical healthcare was withheld. Concerningly, a number of respondents described harrowing experiences of being turned away from A&E, or another emergency service, following a potentially life threatening suicide attempt, without receiving medical treatment. In all these cases mental health services had directed other services to not provide care, insisting that the person understood the risk of their actions due to having capacity. Injuries which went untreated included severe internal injuries from a vehicle collision; overdose; near drowning; burns; and knife wounds. In several cases the person later collapsed or experienced complications from their injuries and required emergency treatment. 1.5% of respondents commented that due to staff perception of their levels of education, intelligence, or medical training, they were automatically judged as having capacity, no matter how they presented. Patients with medical training who attempted suicide but didn’t die had their suicidal intentions disputed, as staff felt that medical professionals or trainees would know the most effective suicide methods.


Theme three: Part of wider problems in services


“Notes are manipulated for professionals to cover their own backs and often frame patients in a way that wasn’t an accurate account of the contact with services.”


“When I was first ‘diagnosed’ with the label BPD, my psychiatrist was very quick to say I had capacity – which, on reflection, was a clear statement that if I took my own life, she couldn’t be held culpable”


“I have known people who have died after having been told this, I have never known this have consequences for the staff that said it.”


“It is noticeable to me that when I am more distressed and less 'compliant' it is said more often. If you are not a patient they like, then you have capacity”


“You cannot put the majority of this treatment down to underfunding. the people in power who are telling people at their most vulnerable moments that they can die if they want, that’s all the same to me as handing them a rope. it’s actively goading them on. it’s pushing them over the edge. people are dying, and that’s not a funding problem. It is a total disregard for life, and a disgusting lack of empathy.”


“This culture of violence and in particular the culture of violence towards women is deliberate not some sort of rogue worker problem.”


“This is not what the mental capacity act is for. I think the word "capacity" is used as a code for "bad not mad" and is an easy excuse to deny care to people they don't like and people they feel are to blame for their distress.”


The final category of comment in the open comments section described how the respondents viewed this phenomenon as part of wider problems with services. 32% stated that they were aware of how this was a national problem, having either experienced this themselves across multiple services and in a number of different localities, and/or being aware that friends and family had experienced this across a number of different services and localities. 26% of respondents stated that they felt this phenomenon was related to a diagnosis of “personality disorder”, in particular BPD/EUPD. Some people indicated that the moment PD was mentioned, “you have capacity” was the automatic response from services. Along with PD, 12% felt that this phenomenon was directed at women, with some comments stating that this was a form of violence against women. 12% felt that placing responsibility for suicide on patients was a type of defensive practice, and that mental health professionals were using legal terms to protect themselves if their patient died. 11% stated that it was difficult, or even impossible, to make complaints or prove that this occurs. Some respondents commented that this was because mental health professionals do not record what they actually say to their patients in their notes, while others felt it was because staff all stuck together to support each other against patient complaints.


Discussion:


All deaths by suicide are tragic. The deaths of people who have actively reached out and asked for help, and subsequently been told they can choose to die if they want, are a disgrace. A stain on our national health service. Healthcare professionals who feel confident and comfortable turning people away during suicidal crises, with the message that if they were responsible, they wouldn’t kill themselves, make a mockery of the country’s supposed desire to prevent suicide.


I decided to do this study because this phenomenon needs a spotlight shined on it. People with mental health issues; Mad people; neurodivergent people; survivors/users of services; etc. hold relatively little societal power. We are disbelieved, ignored, and silenced. We are excluded from research, discussions and decisions about our own lives. We are shunned and shamed and stigmatised, by the very people we are told to turn to for help. People have been shouting about this injustice for years and they have not been heard. Some of those people have not survived. “You have the capacity to choose to end your life” is a larger problem than clinicians and academics are willing to admit. The purposeful misuse of capacity law, to provide a false veneer of legal authority to those being denied the care and protection they are owed by the state, has been going on under the radar for many years. Over 200 people from across England and Wales contributed to this study, with experiences stretching back over a decade. Some respondents stated that they had experienced this dozens or even hundreds of times, some across multiple services and localities. Mental health professionals are aware that this is happening, many are actually doing it, but almost none are speaking about it. The phenomenon of people being told they “have the capacity to end their life” is widespread, and not confined to mental health staff either. Respondents reported mental health professionals seemingly encouraging the same phrases and behaviours in a raft of other professionals, including A&E staff, police, GPs, social workers, care workers, emergency service call handlers, and paramedics.


The experiences described by the people who took part in the study were harrowing to read. The pain, the despair, the desperation, and the fear were palpable. To this day, people are calling mental health services or presenting in A&E, sometimes begging to be helped, frightened for their lives, and are being turned away, told that suicide is their choice, told that no-one is going to stop them from killing themselves. I have been on the receiving end of this myself, both as a patient and a carer, and it changed me. I cannot describe how worthless it made me feel. Before experiencing this, I honestly thought I had plumbed the lowest depths of personal self-loathing and worthlessness, but I was wrong. Nothing has made me feel so utterly devoid of value quite like asking healthcare professionals for help to stay alive, to be told that I will not be given that help, instead, if I want to, I should just kill myself. To exist in a state of so much pain that dying becomes a real and genuine possibility can be unspeakably frightening, distressing and traumatic. Seeking help from mental health services is difficult. It is hard to reach out, it's hard to share such dark and desperate thoughts, it's hard to put your trust in a stranger, to place your life in their hands. But that is what we are supposed to do, it is what we are told to do, it is why mental health and crisis services exist. Going through all this, to then be told that your life is not worth saving, extinguishes that last tiny flicker of hope, which may have been the only thing left keeping you alive. It made me feel subhuman. My exact feelings and experiences were echoed back to me by so many respondents. 95% of people agreed that being told they "had the capacity to choose to kill themselves" made them feel worthless; 96% indicated that it increased their feelings of hopelessness; 84% agreed that it made them feel powerless. I am yet to read a piece of research regarding supporting suicidal people which has concluded that making the suicidal person feel more hopeless, worthless, and powerless is helpful, compassionate, or clinically effective.


It is hard to understand what staff think they are being asked to do, when a person approaches them while suicidal, if their answer is “you have capacity”. It indicates that staff believe they are being asked to make decisions for the person, or use legal powers to detain and treat the person against their will. In reality, most people hearing this phrase are actively requesting voluntary support, not declining it, and as such, the Mental Capacity Act shouldn’t really be relevant. (Additionally, this also forgets the existence of the Mental Health Act (MHA), under which a person can be detained and treated even while they have capacity.) Without any research directly asking clinicians why they are saying this, it is difficult to say for certain the exact clinical motivation which underlies it in individual staff. From a mixture of anecdotal reports on social media, and the experiences of people who took part in this study, we can draw together a few possibilities.

  1. Staff may feel it encourages people to "take responsibility" for themselves, which they hope reduces the person’s reliance on services in the future, as they will apparently learn how to cope alone.

  2. Staff may feel it empowers people or puts them in control by reinforcing the message that suicide is not inevitable, rather, it is a choice that can be made, or not made.

  3. Staff may feel that the person is not actually suicidal, instead, they are saying they are suicidal for a reaction from services, such as increased clinical attention or unnecessary hospitalisation. Staff may feel by telling them they can kill themselves if they want, the person is confronted with a service unwilling to partake in their perceived “games”, and as such, this behaviour is not reinforced and will eventually stop.

  4. Staff may feel that if they declare their patient “capacitous”, and the patient does eventually end their life, it will not reflect as badly on the clinician, as there is an implication of blame on the patient, that they “knew what they were doing”.

  5. Staff may be using the implied blame and narrative of personal responsibility, which goes hand in hand with the declaration of capacity to choose suicide, to justify punitive or criminal justice “interventions” (see: stopsim.co.uk).

  6. Staff may be using a legal term which appears to superficially hold some kind of authority, to cloak a moral judgement of deservedness, so they can exclude people from services who they do not feel are worthy of care, or who they dislike.

  7. “Capacity” may simply be a new word in the “mad or bad” lexicon, with people who do not have capacity considered genuinely unwell, while those judged to have capacity, not considered unwell, but deviant, manipulative, attention-seeking, or otherwise “behaviourally disordered”. (With the reverse also true: those with diagnoses considered serious, such as psychotic disorders, felt to be genuinely unwell and frequently lacking capacity, while those with contentious diagnoses, such as personality disorder, considered badly behaved, and capacitous at all times).

  8. Staff may hold the belief that apparently capacitous people are not in need of care due to a conscious or unconscious attempt at resource rationing, in which they decide who should be gifted with the limited resources available to them.

  9. Staff may hold misconceptions regarding the complex nature of suicide, and view it as something black and white: either the person is totally out of control and needs protection from themselves by restrictive means, or they are totally in control of their actions, and can simply make the decision not to kill themselves, requiring no care.

Contrary to the possible beliefs held by clinicians, telling someone they have the capacity to choose to kill themselves does not work to make people more responsible, less suicidal, more hopeful, or instill them with a sense of empowerment. Rather, it confuses, alienates, depresses, and removes hope and trust. It drives a wedge between people in need of help and the services supposed to provide help. In many cases, it contributes to worsening health, increased suicidal thoughts, and in a sizeable majority, it actually contributes to a subsequent suicide attempt. The majority of people in this study who heard this phrase, or discovered it in their notes, experienced it negatively; it deeply impacted their future relationship with mental health services; and did nothing to contribute to their recovery from crisis.


There were several different ways people reported experiencing this phrase, but in the comments, there were two overall groups which stood out; the people who internalised it, and the people who externalised it. The internalisers were damaged on a personal level, feeling inconsequential, worthless, shameful, undeserving of support, and as if there was something wrong or bad about them as individuals. Some even felt that they deserved to die. The externalisers viewed this practice as part of a wider issue in services, which they linked to stigma, prejudice, and discrimination against specific demographics, such as LGBT+ people, women, and people labelled with PD. This also affected them emotionally, causing anger, feelings of injustice, hopelessness, fear at the loss of a safety net, and increased levels of mistrust in services and in mental health professionals overall. Both groups described high levels of self-discharge or avoidance of services as a result, and both described a greater reliance on family and friends to help care for them. In the internalisers, this reliance caused higher levels of guilt and shame, while the externalisers frequently felt anger towards services for putting them and their families in this position. Overall, it was not a positive, compassionate, helpful, or affirming experience, and caused great pain and distress to most people.


It seems like an obvious statement, but the drive by mental health services to move away from high levels of coercive practices can only be achieved by actually doing so. Pretending to empower people by withholding care or insisting to them that they are in control and can choose to kill themselves if they so desire, is not in any way an improvement on detention and forced treatment. It is still coercive. All that has changed is that instead of ignoring people when they say “please leave me alone”, people are instead being ignored when they say “please help me”. Forcing people to struggle alone by removing their ability to choose care, out of a misplaced belief that it will help them build tools for the future or make them feel in control, is not empowering and does not promote autonomy. Attempting to suggest otherwise is absurd. 83% of participants in this study experienced having care withheld after being told they had capacity. 99% of those people did not give consent for that to occur, and 100% reported that it placed them at risk. These people deserved to be supported then, and they deserve to be heard now. Real conversations need to be had about what patient empowerment and encouraging autonomy actually looks like in clinical practice. Real questions need to be asked and answered about how replacing one set of coercive practices with another is any kind of improvement in mental health care provision.


The Mental Capacity Act outlines the right of adults to be presumed as having capacity, unless there is cause to assume otherwise, in which case they should undergo a capacity assessment. Given that capacity is usually fluctuating in nature, it is considered time and decision-specific. In healthcare settings, adults with capacity have the right to make their own healthcare decisions without undue encroachment from clinicians, and healthcare professionals require consent to provide clinical interventions. For people assessed as lacking the capacity to make specific healthcare decisions, if other decision making avenues have been unsuccessful, the MCA allows clinicians to make these decisions for them in their best interests. The purpose of the MCA is to protect people from paternalism and coercion, not to provide legal leverage for healthcare workers to withhold care from people presumed or assessed as having capacity. We do not have a healthcare system based on the exclusion of capacitous people. Interestingly, in theoretical discussions around ‘assisted dying’, mental health professionals tend to lean towards the presumption of incapacity in those seeking to end their lives [20], particularly when the hypothetical person requesting assisted dying presents with mental health issues such as depression [21]. One study of psychiatrists’ views on assisted dying found that 73% of those surveyed believed at least two independent examiners were required to determine whether someone had the capacity to choose to end their life, while a further 44% believed such a decision required a judicial review. Finally, 58% believed that the presence of depression should result in an automatic finding of incapacity [22]. Strangely, in actual mental health patients experiencing suicidal crises, the presumption often appears to be one of full and complete capacity. Without assessment, with long term, documented mental health conditions, and while asking for help, people are being told over the phone, or while standing on the edge of buildings preparing to jump, that they don’t just have the capacity to end their lives, they in fact have so much capacity, they cannot even be provided with the care they are requesting. This is not a lawful use of the Act. For capacitous people requesting crisis care when suicidal, the MCA does not stand in the way of healthcare professionals providing that care. For people lacking capacity who are requesting crisis care when suicidal, the MCA and the MHA are at the disposal of healthcare professionals to provide care, if needed. For capacitous suicidal people who are refusing help, the MHA is available for healthcare professionals. For suicidal people both lacking capacity and refusing help, the MHA and MCA are available for healthcare professionals. I honestly do not believe that this phenomenon lies in a misunderstanding of capacity law. If this was such a simple mistake to make, and continue to make, why is this problem not present in other areas of healthcare? Where are the droves of people being turned away from GP practices or A&E departments, because despite their badly fractured arm, or their productive cough, they have capacity, and as such, medical staff believe they cannot treat them..?


“If you are not a patient they like, then you have capacity”. This was said by one of the respondents in the open comments section, and it really struck me. I felt it so deeply, I found myself thinking about it for days. I decided to use it in the title, because it so succinctly goes to the heart of the “you have capacity” phenomenon. For some individual staff, the culture of this specific misuse of the MCA in services may have contributed to a personal misunderstanding of what capacity is in relation to suicide, however, there are two things that must be said about this. Firstly, healthcare staff who use capacity law in their practice should have a thorough understanding of the MCA and its associated code of practice. There is no excuse for this misuse. If you are using a statute, you should understand it. Secondly, whether some individual staff members honestly believe they cannot provide care to capacitous people, is not relevant. A “mistake” is not what lies beneath this widespread misuse of the MCA, and more importantly, it is not what perpetuates it. “You have capacity” has nothing to do with mental capacity. It is not a misunderstanding of the Mental Capacity Act. On this wider level, it is not a terrible mistake made by staff who have not grasped the complex nature of capacity law and how that relates to autonomy and suicide. The everyday experiences of people being told that if they want to die, no-one is going to stop them, speaks of a designation of worth to that person’s life. “You have the capacity to end your life” is about moralisms and judgements of deservedness. If you are a person deemed worthy of care by healthcare services, your suicidality is felt to require support whether you have capacity or not. If you are deemed unworthy, your suicidality becomes an act of moral degeneracy, and whether or not you have capacity, you have capacity, and as such do not require, or in some cases, deserve, support. In an overworked, understaffed health service drowning due to lack of funding, it is advantageous for staff to designate patients who cannot be treated and discharged in 6 CBT sessions, the label of “difficult” or see them as undeserving, and thus find reasons for discharge. This drive to covertly ration resources is frequently internalised by healthcare professionals and translated from financially driven decisions, to interventions they have convinced themselves are clinically beneficial. It is much easier to withhold care from someone if you have first reassured yourself that they do not need that care. Alongside financially driven decisions come clinical decisions made by healthcare professionals due to their personal feelings of distress, disgust, anger, fear, and frustration. Patients who don't recover as expected; make complaints; don't act perpetually grateful or with high levels of deference; display high levels of distress; speak openly about "uncomfortable" traumatic experiences; struggle with the mental health system; or who engage in actions clinicians may find hard to cope with (such as repeated suicide attempts or self-harm) seemingly "challenge" the professional identity of clinicians as "helpers". Where clinicians experience negative emotions towards their patients or their perception of their patients potential outcomes, they may be inclined to exclude or avoid them. The chronically suicidal patient barred from crisis services because they will get well if they just take responsibility for themselves; the person who self-harms supposedly made worse by hospitalisation and so blocked from all further admission; the traumatised person labelled with a personality disorder so they can be packed off to online DBT sessions with thousands of others and forgotten about; the person who calls emergency services every week, threatened with legal action if they don’t stop, supposedly in their best interests; appointments, therapies, and inpatient admissions cut in half to ensure people don’t become “dependent”; distress twisted into tales of attention-seeking and manipulation, leading to complete exclusion from all services, so the “behaviour” is not reinforced.. Do staff ever stop to think how incredibly convenient it is that the “optimal treatment” for people services don’t like is always a reduction in care? Further underlying this is self-serving defensive practice and the offloading of responsibility. If the patient knows what they are doing, making deliberately “irresponsible” - but capacitous - decisions, their death is their own fault, right? In that way, the clinician can breathe a sigh of relief, seemingly washing their hands of any clinical, legal, or ethical responsibilities for their patient’s life.


An unholy combination of financial pressures; echoes of behaviourism; neoliberalism; individualism; misogyny; anti-PD rhetoric; suicide myths; mental health stigma; moral judgements; and fear of blame or litigation have deftly woven themselves together within mental health services, in such a way that they have become inseparable, continuing to flourish by providing one another with sustenance. Together, these factors blossom excuses to deny care. “You have the capacity to end your life” is merely one of these excuses. “High risk of death by misadventure”; “You understand the consequences of your actions”; “You have capacity”; “Suicide is your choice”; “You need to take responsibility”; “It’s not mental health its behaviour”; “We can’t help because you’ll become dependent”; “If people want to kill themselves they can’t be stopped”; “If you really wanted to die you would be dead”... All of these statements come from the same place, serve the same purpose, and echo the same sentiments. While it is important to individually tackle each of these “excuses'' to withhold care, such as enforcing proper and lawful use of the MCA, it is arguably more important to focus on the underlying issues in services, of which the misuse of the MCA is merely a single rotten tendril. The MCA was written into law for the purpose of empowering vulnerable people; to enshrine the rights of people to make their own decisions about their lives; to reduce medical paternalism; and minimise coercive practices. That it is this Act which is being subverted by healthcare professionals to disempower people, remove choice, and enact paternalistic and coercive practices is particularly repulsive. I have included some suggestions below for future research, but I do not believe research is the panacea for this problem. We know it is happening; we know it is not the correct use of the MCA; we know it is harming people. Real and tangible actions are needed, right now, on the ground, before any more lives are lost, or any more people suffer because of it.


Questions for future research:

  • Gender differences: the study was mostly responded to by cis women. Does this reflect the online demographic where the questionnaire was shared; the demographics most likely to seek help when suicidal; the high rates of personality disorder diagnoses in women; or are women simply more likely to be considered responsible for their suicidality and more likely to be assumed/assessed as having capacity?

  • Is this capacity line rolled out at a similar rate with people who present to mental health services for the first time, as compared to longer term patients, or are the latter group just no longer believed because they haven’t yet died from their suicide attempts?

  • This phenomenon is not contained to mental health services. Police, A&E staff, social workers, care home staff, paramedics, 111 operators, and GPs were also mentioned by respondents. This should be explored, with particular focus paid to the possibility that non-mental health professionals are encouraged to make these decisions by mental health services.

  • I specifically did not ask for location or the NHS Trusts people were/are under, to preserve people’s anonymity. In a larger study, location/Trust would be interesting to look at in case there are noticeable hotspots. Comments which disclosed the person's location indicated that this was a national problem. All areas of England and Wales were covered, with London and Yorkshire particularly noticeable.

  • Other patient demographics to consider, including sexual identity, ethnicity, socioeconomic status etc.

  • Health and social care professionals understanding of suicide and how it relates to choice, responsibility, and mental capacity. There is so much to unpack here. Suicide myths are rife in services, particularly surrounding suicide and psychosis; ambivalence; chronic vs acute suicidality; and the psychological and mechanical complexities of taking active steps to end your life.

This is original, independent research, conducted by myself voluntarily and without any form of remuneration. I am a mental health service survivor; Mad activist; and have first hand experience of having care withheld after being told I had the capacity to kill myself. I am not affiliated with any health or educational organisation, charity, or governmental body. If you would like to discuss this research further, please contact me by email: wren.aves@gmail.com, or via twitter: @jaunty_aphorism.


If you quote, reference, or reproduce any part of this research, please use the following citation: Aves W. “If you are not a patient they like, then you have capacity”: Exploring Mental Health Patient and Survivor Experiences of being told “You Have the Capacity to End Your Life”. Psychiatry is Driving Me Mad. 2022. DOI:10.13140/RG.2.2.34386.84163


You Have Capacity
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References

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