Monthly Archives: August 2015

End of Life Dementia Care and Best Interests Decision Making:  Some potential considerations where the person is identified as “unbefriended”

By Martin Benfield
Approved Mental Health Professional (AMHP)

As an AMHP and having been involved in the design and delivery of a DoLS Best Interest Assessor (BIA) course, I have read the blogs on this site with interest.  I was moved by them to reflect upon both my personal experience of bereavement and my practice as an AMHP when called upon to assess people with a late stage dementia.  Some of these reflections were both poignant and challenging.  The issue of protecting the best interests of a person with severely compromised mental capacity is always complex, as all concerned are required to strive to ensure that any restrictions are necessary and proportionate to the likelihood and severity of harm to the individual.  Yet, in many ways, there may be no harm free option:  It is a particularly complex assessment to determine an appropriate balance between restrictions to keep the person physically safe and the importance of maximising autonomy and respecting any end of life wishes.

Generally these assessments will, as required by applicable legal frameworks and professional good practice, involve consultation with the person’s family and/or significant others.  Yet not everyone has people who can be consulted in such circumstances.  The focus of my thoughts therefore turned to how we can and should proceed at such times.

Objective 12 of the Government’s dementia care strategy (published in 2009 but still valid today) requires sustained effort to improve end of life care for people living with dementia.  In addition, it cannot be ethical to conclude that the “un-befriended” can be treated in a less person centred manner than those who have family or friends to help assessors understand their preferences, vulnerabilities, fears and anxieties.  Nor would it be acceptable to conclude that because of the different challenges in ascertaining what their wishes may involve, we can apply less rigour to the assessment of their best interests.  Indeed, it appears to me entirely pertinent to pose the question:

“In order to ensure equality do we need to apply extra time and resources to assessments in such circumstances?”

Where there is an important decision to be made for incapacitated people who the Mental Capacity Act (MCA) refers to as “un-befriended” the MCA requires the appointment of specially trained advocates (known as IMCAs).  In my experience IMCAs have very useful skills and perspectives in supporting the individual through the assessment processes and their involvement can be a significant safeguard for the person’s human rights.

However, having had the opportunity to train in Dementia Care Mapping and having undertaken some mapping work, I would like to propose that this person centred assessment tool should become more widespread.

Before I read Kitwood (1997), I had not really given sufficient thought as an AMHP to the potential for dementia care to be fundamentally person centred.  I had a sort of underlying assumption that is shared by many, that in some way by damaging the person’s short term memory and the attendant impairments in cognitive function, dementia meant that the person was somehow lost to themselves and others.  I no longer have this underlying assumption.  In terms of planning and implementing palliative care for a person with dementia, it is most desirable to minimise the distress and maximise the potential well-being of the cared for person.  While I acknowledge that mapping is a labour intensive process, I do believe it has the potential to be the most effective means for assessors to ascertain the impact, and therefore proportionality, of any restrictions upon the individual’s sense of personhood and well-being.

This potential would appear to me to be worthy of significant research. If we are to successfully improve end of life care for those people with dementia defined as un-befriended, we will need to develop further, tools such as dementia care mapping.  Mapping’s potential is as a means of ascertaining the person’s wishes and feelings that they may be unable to articulate.  In terms of the fundamentally person centred theoretical basis of DCM and in my experience (both personal and professional) people can and do demonstrate their preferences in the detail of their responses to the social psychology of different care environments and practices.

While I would like to see Dementia Care Mapping made available to all people who need care and support while living with dementia, I would suggest that it could be considered a priority in the circumstances I have discussed here.

Sources 

Kitwood, T. (1997)  Dementia Reconsidered; the person comes first, OU Press

Dementia Care Mapping 

National Dementia Strategy 2009

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Deciding for the Future

Professor Richard Huxtable considers some of the ethical questions that arise, when we try to decide what treatment to give – or not give – to a patient who is nearing the end of life

By Prof Richard Huxtable
Centre for Ethics in Medicine, School of Social and Community Medicine, University of Bristol

Have you made an advance decision to refuse medical treatment? Have you appointed a “welfare attorney” – someone who can make medical decisions for you in the future, if (at that time) you are unable to do so? A great many people say that they want control over what can and cannot happen to them and their bodies. But it also seems that a great many people don’t make these wishes clearly known, in advance of them reaching a point at which they can no longer tell us what those wishes are. Should more of us be trying to make decisions for our futures? What are the ethical issues that arise here?

First, we should think about the types of decisions and people we are considering. If we’re talking about healthcare, then there are various decisions that may need to be made about what treatment and care to provide – or not provide – as life nears its end. Decisions may therefore be required about resuscitation, food and fluids, keeping her comfortable and free of pain, and so on.

If the person can tell us her wishes, here and now, then maybe there is no problem. But what if she cannot? English law makes a distinction between the person who has “mental capacity” and the person who does not. Mental capacity means the ability to take in, understand, and reason through the information available, and then come to a decision.[1] Capacity varies with the decision – I can have capacity to make one sort of decision, but not another. (Think, for example, of the card in my wallet, which suggests that I have the competence to drive a car – this does not mean that I have the competence to pilot an aircraft).[2] And sometimes capacity can be completely lost, such as when the individual has endured a very serious brain injury.

Whether she has lost her capacity permanently or only temporarily (or even only for one sort of decision), decisions will of course have to be made about how to care for the dying person. Understandably, we will often allow someone else to make the decision. In healthcare, this might be a doctor, who will make a decision in that person’s “best interests”, as the law requires.[3] This might seem sensible enough, but immediately the ethical questions arise. How should we understand a person’s “best interests”? Is it best that the doctor does whatever is necessary to prolong the person’s life? Or should the doctor be guided by the quality of that person’s life, and by any pleasure or suffering they might be expected to receive or endure? If the suffering is too great, then is it ethical to stop (or not start) treatment that might otherwise save or prolong her life? And to whom should the doctor be listening when trying to make the decision? Indeed, should it even be a doctor who makes the call?

These sorts of questions seem to boil down to two big questions: On what basis should treatment decisions be made? And who should be empowered to take these sorts of decisions? Ethics is all about asking “should” questions like these, and ethics is particularly concerned to ensure that we behave in appropriate ways, in our dealings with one another. Of course, some will say that there is a straightforward answer to both of these questions: we should let people decide for themselves.

Advance heath care directive (USA) form http://martineehrenclou.com/

The law already allows people to decide how decisions should be made about them in the future, at a point when they have lost capacity. There are two main options. First, an “advance decision to refuse treatment” can be made.[4] To use me as an example, this would involve me, when I have mental capacity, setting down in writing my wishes about what treatment I would not wish to receive, if I were to lose my mental capacity. Secondly, a “welfare attorney” can be appointed.[5] Here, I will write down who I would want to make healthcare decisions for me in the future, and what sorts of decisions I want them to be able to make.

This all sounds agreeable in principle. Indeed, the principle in question looks like being the principle of “respect for autonomy”. Autonomy, from the Greek, is all about self-rule i.e. I decide what’s best for me, so the principle states that we should respect people’s ability to govern their lives for themselves. But, when we dig a little deeper, we come up with more ethical questions. Whose autonomy should we respect and when? (Think of children and younger people – if I wrote down my wishes at 15, should these be respected when I am 41?) And what should it mean to “respect” autonomy? Should we respect – and act on – everything that the person says or said? Or can we place some limits on what people should be allowed to want and get? Finally, and this is a real philosophical head-scratcher, if I wrote down my wishes when I was healthy and had the mental capacity to make the decision, why should this statement apply to me when I am very sick and have lost that capacity? Am I even the same person in any meaningful sense?

To these questions we can add plenty more, once we peer into the details of advance decision-making and welfare attorneys. Thinking about welfare attorneys, we might have questions about who the attorney should be, and how much authority they do have and should have. Currently, the welfare attorney is bound not only to think about what that person might have wanted, but also to make decisions in the person’s best interests. That, of course, brings us back to the earlier dilemmas associated with deciding what is really for the best.

Advance decisions also raise questions. Can people specify – in advance – what they want to happen in the future? Will these statements be clear enough to guide the doctors and other members of the healthcare team? How much detail is needed? Some people have taken to getting tattoos on their chests saying, for example, “not for resuscitation” – should the doctors take such tattoos at face value?[6]

Although there are undoubtedly many more, these are some of the most significant ethical questions that arise when we consider how to treat – and not treat – people towards the end of their lives, and particularly when we consider how to go about making decisions for the future. Certainly, we need to be guided by what people want. First, then, we need to know more about what people – and, indeed, their loved ones – want at the end of life. In our research, we hope to find out more about this. But even once we know what people want, we also need to think about the wider ethical questions – about how far we should honour people’s wishes, and how we should balance these wishes against our responsibilities to other people. These, too, are the sorts of questions we are interested in exploring.

We hope, in asking these sorts of questions in our research, that we can make a positive contribution to providing good quality care for the dying person. Hopefully the answers we will find will help us to find an ethical way forward – answers that, like all good ethics, will help us to think about what we should do and who we should be, in our journey through life to death. Of course, if we’re going to improve end-of-life care, we need to be willing to talk about it – about what we might want or not want, whether that is now or in some possibly distant future, and about what we think our laws, policies and practices should be. In the words of the Dying Matters coalition, “dying matters – let’s talk about it”.

[1] The idea is explained in more detail in an Act of Parliament, the Mental Capacity Act 2007, which became law in 2007. The relevant provision can be found here.

[2] I expand on this idea – and, indeed, on many of the ideas in this post – in my book Euthanasia: All That Matters (Hodder, 2013).

[3] This idea is also contained in the Mental Capacity Act 2007. The relevant provision can be found here.

[4] This idea is also contained in the Mental Capacity Act 2007. The relevant provision can be found here.

[5] This idea is also contained in the Mental Capacity Act 2007. The relevant provision can be found here.

[6] BBC News covers one such story, here.

The AMHP as Officiant: hospitalisation as a transitional event towards the end of life

By Rob Moore, Approved Mental Health Professional (AMHP)

The recent blogs by Christine Valentine and Jeremy Dixon made me reflect on my role as an Approved Mental Health Professional (AMHP).  Jeremy questioned how people towards the end of their lives might experience the legislative framework of the Deprivation of Liberty Safeguards (DLOS). Christine described feeling at the mercy of the disparate ‘system’ of professionals and agencies that became involved prior to her mother’s death. In my role as an AMHP I am very much part of the system, at times using legal powers towards the end of people’s lives.  This process is not however simply a technical activity but in my experience can feel like participating in an important ritual of transition.

The AMHP Role

AMHPs are predominantly social workers who have undertaken further specialist training so that they are qualified to assess people for detention under the Mental Health Act 1983 (commonly known as ‘sectioning’).  The AMHP has an overall role to coordinate assessments that usually also involve two doctors. The AMHP is able to make an application for detention in hospital if she is satisfied that, taking into account all the circumstances of the case, this is the most appropriate way of providing the care and medical treatment that the person needs, and both doctors recommend detention under the Act. Under the broad definition of ‘mental disorder’ people with dementia can be detained in hospital if the risks warrant it and there is no less restrictive option.

If someone lacks capacity it may under certain circumstances be more appropriate to use the Mental Capacity Act 2005 to admit someone to hospital or a care home in their best interests, at which point DOLS may come into play.

This is a complex legal landscape in which different Acts and changes in case law all need to be considered. The recent update to the Mental Health Act Code of Practice gives some valuable guidance on the use of the Mental Health Act vs the Mental Capacity Act [1].

Alongside a good working knowledge of the legislative landscape, an AMHP will often find themselves needing to operate in emotionally charged circumstances. Almost by definition we are called upon urgently in times of crisis when someone’s situation has taken a significant turn for the worse. Towards the end of life we are most likely to be called when it is suspected that as a result of dementia the person is now posing a significant risk to themselves (for example, by wandering out at night or into the road) or to others (for example, as a result of violence or aggression). Sometimes those around the person can manage such changes, perhaps with additional support or a change of medication. On other occasions this is not possible and a carer or care home are unable to keep going.

Hospital admission and lifecycle transitions

When assessing someone with dementia for hospital admission, carers and professionals are often aware that the proposed admission is a highly significant moment in the lifecycle of the individual and their family. Broadly speaking, for other mental disorders detention is seen as a chance to intervene in the person’s situation so that they can leave hospital in improved circumstances. For someone with dementia, hospitalisation for assessment or treatment of their illness can often signal a permanent and significant reduction in independence. It comes with a real possibility that discharge will not be to the environment from which they were admitted but to a more specialist placement. In this way hospitalisation can mark a transition from people living in their own home, possibly with family, to an institution; or from a general care home to a specialist dementia care or nursing home.

Family members are often present who are likely to have been hugely involved in supporting their loved one and to have multifaceted experiences of this as burdensome but also important and possibly rewarding [2]. Perhaps understandably, when the person I am assessing has significantly reduced agency and capacity, more focus is given to those around them than might otherwise be the case.

Bloomer et al 2014 [3] found that carers hugely value the opportunity to talk about their experiences of the hospitalization. I have noticed how with overwhelming sadness but also conviction family members will talk of no longer being able to manage the caring role and of how the unique personhood of their loved one has reduced, perhaps to the point at which ‘you could say the man I married died years ago’. On occasion carers have spoken to me about how they can now start looking after themselves and get on with their lives: ‘it’s time for me now’. Such comments invite me as an ‘expert’ to validate the complexity of their experience and legitimate thoughts that that have perhaps hitherto been unspoken and unspeakable. These conversations might take place in snatches as I try to coordinate a bed or transport or perhaps over the kitchen table with a wife or a son after the ambulance has taken their loved one away.

Rituals of transition

Much more than simply a technical medico-legal process, the above scenarios speak of a multi layered social reality. In our society certain points of transition in the family lifecycle, for example marriage, have widely recognised and culturally available rituals attached, while others such as a miscarriage do not [4]. It seems to me when I am involved in admitting someone with dementia to hospital I am taking part in a ritual of transition. It is a process on the cusp of change, full of unknowns and fears for the participants. However, as anthropologists have described [5], as with all liminal periods in rituals this openness is limited by a prescribed sequence and rules (the medico-legal attention to diagnosis and the appropriate legal framework) and by an ‘officiant’ (the AMHP).

In my experience, the transitional aspect of hospitalisation has been minimally recognised and explored and is a long way from anything covered by legislation or codes of practice. I think that it is important how we conceptualise events. Solely focusing on the technical-legal aspects of hospitalisation increases the chances that people will feel processed by the system. One alternative for me is to be mindful of the role of officiant, particularly when people with dementia are admitted to hospital. Doing this helps me to consider the weighty significance of the event for all involved. In a job that contains significant and often unacknowledged ‘emotional labour’ [6], it also helps make sense of how these types of circumstances are some of the most affecting that I experience as an AMHP. When I leave an assessment I often do so with a sense that I have born witness and hopefully helped bring about a safe transition: a significant step in the process of someone’s social as well as biological death and also a profound moment of transition within their wider family lifecycle.

References 

[1] https://www.gov.uk/government/publications/code-of-practice-mental-health-act-1983

[2] Sutcliffe, C.L., Giebel, C.M., Jolley, D., & Challis, D. (2015). Experience of burden in carers of people with dementia at the margins of long-term care. International Journal of Geriatric Psychiatry

[3] Bloomer, M., Digby, R., Tan, H., Crawford, K., & Williams, A. (2014). The experience of family carers of people with dementia who are hospitalised. Dementia

[4] Burnham, J. (1986) Family Therapy: First steps towards a systemic approach, 36-39 Routledge, London

[5] Szakolczai, A. (2009) Liminality and Experience: Structuring transitory situations and transformative events. International Political Anthropology 2:1, 141-172

[6] Gregor, C. (2010) Unconscious aspects of statutory mental health social work: emotional labour and the approved mental health professional. Journal of Social Work Practice, 24:4, 429-443