Everyone seems to think that better engagement with the views, wishes, feelings, and choices of patients is a good thing, at least in principle. The rise of the Recovery Movement is but one manifestation of this, and the Wessely Review (Wessely, 2018) proposes changes to the Mental Health Act (MHA) that would give patient views greater prominence. This applies for incapable as well as mentally capable individuals. The House of Lords review of the Mental Capacity Act (MCA) (House of Lords 2014) repeatedly emphasised the ‘empowering ethos’ of the MCA as regards people lacking capacity. All this is reflected in MHA and MCA Codes of Practice, CQC directives, and innumerable policies of NHS Trusts up and down the land.
While there is broad support of this in principle, the practice seems to be quite different. In the PARADES survey of 549 people with bipolar disorder, 95% thought that advance planning was important or very important, but less than a quarter had actually used one of the advance planning mechanisms contained in the MCA. A sizeable majority who had not used such mechanisms said they had not done so because they did not know about them (Bartlett et al 2016; Jones et al 2018 ch. 6) – Hindley et al reached a similar finding. These are people known to services; if they do not know about advance planning, it is because they are not being told by those in the health system (nor, to be fair, by anyone else – care planning is not just about health).
The Mental Health and Justice initiative at King’s College London has designed an advance planning template for use in psychiatric settings. The design flows from a set of focus groups of stakeholders, analysed in this blog. The authors’ hope is that a better form will mean better implementation.
The research element of this work was based on 7 focus groups, with a total of 10 people with bipolar disorder, 3 family members, and 19 clinicians. A draft advance planning template had been developed before the focus groups, and was revised subsequently in light of the focus group discussions. Discussion was based in part on semi-structured interview, and in part on inviting a response to the draft template. Focus group discussions were analysed using thematic analysis.
Results, Conclusions and Outcomes
The themes identified by the focus groups were as follows:
- Format matters – what the form is called, how detailed it should be, and how user-friendly it is
- Advance decision-making is a reflective process, not a one-off event
- Accessibility – if they are made, these things do need to be able to be found, and they might perhaps increase communication between agencies
- The patient’s own experience of his or her condition would be more valued and used productively
- Medico-legal assessments would be personalised
- Outcomes would likely be enhanced, with patients reflecting on their experience of their condition, and alliances forming that would build trust with practitioners and ongoing engagement with treatment programmes
- Some practitioners did express concern that their decision-making might be undermined, and sub-optimal care given to patients as a result.
Strengths and limitations
I am a supporter of an increased role for the wishes and preferences of patients (whether mentally capable or not) in decision-making generally, including in the healthcare sector. Insofar as this research is doing that, it is in my view a good thing. I am thus in overall sympathy with the direction of the paper.
The themes identified from the focus groups are generally unsurprising, and reflect the broader literature on advance decision-making. That is not a criticism; it is always helpful to have those messages re-enforced.
The research paper does have its problems, however. A general enthusiasm for advance planning among all participants is noted, but beyond this people providing views are generally identified only as “participants”. Any diversity of views between service users and clinicians is left to guesswork. And it is reasonable to suspect that there would have been some differences. We are told for example that one concern was “how to reconcile aspirations with resource constraints and ensure clinical, legal and social practicability, in order to avoid unrealistic expectations about the accessibility and implementation of documents”, which sounds much more like a clinician than a service user. This matters because the barriers to implementation may be different between service users and clinicians. Certainly, user friendly forms matter, but only if service users are given them, and clinicians’ reasons for doing so (or not) may be quite different from the concerns of service users.
Tension lies not just in the general question of the desirability of advance planning, it also extends into the design of the template. We are told for example that a “complication was finding language which made clinicians comfortable with the responsibility involved in endorsing advance requests and commenting on refusals. The solution was to include distinct sections for service user requests, agreed requests and for each party to explain rationales”. I understand and acknowledge the administrative realities faced by clinicians, but here and elsewhere, there is a sense that we are looking at a process of negotiation of care, in a situation where the playing field is not level between the clinician and service user. The risk is that the completed template becomes an unequal compromise view, not a process by which a patient can express his or her clear and perhaps profound views. If our starting point is shared decision-making, this is perhaps not problematic: compromise is what that model is meant to induce. If however what we want is a document, for example, that will assist in identifying the individual’s wishes, feelings, beliefs and values, it will be much less helpful, since a negotiated compromise is something quite different.
The final template is also not always clear as to the legal ramifications of the contents of the form: an individual filling in the form would be forgiven for believing that all the answers have the same legal clout, since there is nothing on the form to distinguish between them. This is not true. Most advance decisions to refuse treatment will be legally binding: treatment provided in violation will land a clinician in serious trouble. The obvious exception is for psychiatric treatment of a detained patient (but that is not explained on the form). Expressions of wishes are not binding in the same way. Under the MCA, they have to be given serious consideration, but do not need to be followed in some circumstances. Under the MHA consent to treatment is necessary for non-detained competent patients, so proper consent is required. For detained patients under the MHA, the force of expressions of wishes is governed only by guidance in the Code of Practice, and they therefore have limited legal weight (although a position reached through shared decision-making may be of considerable assistance).
These sorts of nuance are meant to matter in law; but are nowhere explained in the template. The research team would no doubt argue (following their participants) that too much detail makes the form unworkable. That is a fair point, but getting people to make statements when they do not know the effect those statements may have is also a problem. Notably, there is no reference on the form to whether the individual has a Lasting Power of Attorney. That matters: if he or she does (and lacks capacity), then the holder of the LPOA makes the decisions discussed on the form on behalf of the incapable person – but there is nothing on the form that would alert the clinician to this person’s existence.
All of this raises the question of how this form is meant to interweave with the other forms developed and required by legislation, regulatory bodies and Trusts. Is it supposed to supplement these other forms (so an additional form – just what clinicians need and want!) or to supersede some of those? And if the latter, which forms will it supersede, and are the drafters sure that it contains all the information needed to do that?
And how is it meant to engage with other care? The form is clearly meant to take effect at times of psychiatric crisis. Somewhat surprisingly, it does not appear to probe into whether external supports could have averted the crisis entirely, and might be used in the future to do so. This is a form about ‘treatments’. In that sense, it does seem to be adopting a rather compartmentalised view of care, at a time when we are increasingly realising the multi-faceted nature of care.
Implications for practice
The objective of this research was to address the barriers to implementation of advance decision-making in the context of severe mental illness. I started this blog by noting that a key reason service users are not taking advantage of advance planning would seem to be that no one is telling them about it. Will this new PACT template change that?
I am sceptical. The PARADES study looked at the reasons for clinicians failing to promote advance decision-making (Bartlett et al, 2016, 273-277). Some issues were purely practical, such as unfriendly interfaces on Trust computer systems: is it clear where the forms are found and to be filed? While that may appear mundane, re-jigging the architecture of computer software is not necessarily easy, and if this sort of thing is not fixed, it is difficult to see how advance planning can be successfully implemented.
Availability of time was also clearly a factor. It has never been the case at least in my professional career that psychiatrists and other mental health professionals have been looking for ways to fill their time, and there it is no secret that after ten years of austerity, the system is at breaking point. Advance planning takes time. The PACT template runs to 15 pages, many of which call for reflective and nuanced answers. The richness of that content is the strength of the form, but providing service users with appropriate support in completing the form is not a small task. If the time problem is not solved (and I am not holding my breath on that one), it is difficult to see that the template will get much traction.
These are real problems, but they mask a more fundamental one, based in conflicting values in clinicians: how much autonomy should patients have, how does that relate to clinical expertise, and what should the patient and professional roles actually look like? The PACT was presented throughout the research as a document to “inform, not fetter, clinical judgement”, but it would seem that concerns regarding restrictions on the exercise of clinical judgment arose throughout the project. That is not just an issue in individual clinicians. A Trust administrator said to the PARADES project: “If you’re thinking about patients with a mental disorder making advance decisions to refuse treatment, and yet when the core business of the Trust is to treat mental disorder, you can see where there might be a certain amount of conflict of interest” (Bartlett et al 2016, 276). The tension is engrained in the system. This clash of values clearly creates a barrier to the willingness of clinicians to encourage the use of advance decision-making.
This is not the place to launch into a discussion of the role of service users and clinicians in the law and politics of mental health provision, and I would specifically decline to speculate here as to what formulation the brave new world would have. I would say that it must be addressed if we are to see the barrier fall. That will require a cultural shift, and there is no evidence of that being on the cards, or even of the questions being formulated which would open the discussion.
All that really is not going to be solved with a new pro forma, whatever the pro forma’s virtues.
Statement of interests
No financial interests. I am one of the lead investigators on the MCA elements of the PARADES study, cited in this blog post.
Gergel T, Stephenson L, Owen G, et al (2020) The PACT mental health advance decision making template. Advance Directives in Bipolar project, King’s College London, June 2020 DOI: 10.13140/RG.2.2.31047.73128
Stephenson L, Gergel T, Ruck Keen A, et al (2020) The PACT advance decision-making template: preparing for Mental Health Act reforms with co-production, focus groups and consultation.
Bartlett P, Mudigonda M, Chopra A, et al (2016) Planning for incapacity by people with bipolar disorder under the Mental Capacity Act 2005, Journal of Social Welfare and Family Law, 38:3, 263-286,
Hidley G, Stephenson L, Ruck Keene A, et al (2019) ‘Why have I not been told about this?’: a survey of experiences of and attitudes to advance decision-making amongst people with bipolar Wellcome Open Res 2019: 4:16
House of Lords (2014) Select Committee on the Mental Capacity Act 2005. Mental Capacity Act 2005: post-legislative scrutiny PP 2013-14 HL .
Jones S, Riste L, Barrowclough C (2018) Reducing relapse and suicide in bipolar disorder. NIHR Journals Library; 2018. [PubMed abstract]