A social framework

By Jana Kralova
University of Bath

The blog was first published on The Conversation, 29 June 2016

Every year, over 50m people in the world will die. Old age, disease, war and starvation all contribute to that number, and scientists, doctors and charities do their best to bring the figure down.

But there is no statistic which accurately measures the number of humans facing social death. The “socially dead” are an increasing section of the global population who are effectively dead. Their hearts still beat, their lungs still breathe, so technically, and physically, they are still alive. But this isn’t living as such – it is mere existence.

These are the people who have died before they’re physically dead. Physical death, the degradation and eventual cessation of your ability to function as a body, comes later. Social death is the degradation and eventual cessation of your ability to function as a social being. It happens when you are set apart from the rest of humanity.

Social Death: Image courtesy of Jana Kralova

It happens when your legal protection and autonomy is profoundly impaired and you have almost no way of defending yourself. Your sense of belonging to a group, culture or place fades and eventually disappears under the pressure of your circumstances, while your roles in life, such as those associated with employment, family and community, are also broken.

Your inter-generational relationships along with your spiritual faith and hope diminish while your physical condition deteriorates. Most importantly, you have lost all meaningful social relationships and are considered valueless in the eyes of society. It is a reality faced by many experiencing profound poverty, chronic illness, homelessness, advanced dementia and forced migration. And by its very nature, it is a reality which is widely ignored.

Specialist researchers have charted the changing profile of social death and its diagnosis in, for example, those imprisoned in solitary confinement, people forced to leave their homeland as refugees and individuals with incurable infectious diseases who are treated as social outcasts. It affects large groups whose communities have been destroyed by natural disasters, or targeted by state-sponsored violence, and whose security has been reduced by prevailing political ideology.

So what should we do about the socially dead?

First, we must establish a formal means of recognising them, a task which presents immediate difficulties. Conducting research on those considered socially dead, although much needed, is ethically and practically challenging. By their nature, these people have little legal recourse and autonomy, and so must be safeguarded from exploitation whilst simultaneously being studied.

The principal problem with recognising the socially dead is asking the right question. “How dead is this person?” sounds like a ludicrous question. The response will be: “Is this person dead or not?” It will not lie upon a scale. It will not allow for nuance. As such, how can it possibly reflect the nuances of a person’s lived experience?

To address this, I would argue that social death is similar, conceptually, to a more accessible term: “well-being”. This encapsulates all aspects of a person’s quality of life – including both external and internal factors, such as mental health or social class – but critically, these factors have different levels of severity. They can be placed on the scale. It is possible, therefore, to speak of a negative counterpart to well-being, namely “ill-being”.

With this approach, we could explore social death quantitatively: to consider an individual (or group) not as being either “dead or not dead” but as existing on a scale of “more to less dead”. If a robust framework exists within which individuals or groups may be considered more at risk of social death, then practical steps may be taken to address this, such as securing funding and an international consensus. Some steps have been taken in this direction already.

The late philosopher Claudia Card argued for the inclusion of social death in the UN definition of genocide and the creation of a rigorous legal framework around the term. Extending the legal definition in this manner would, for instance, reappraise systematic acts of rape in war – such as the “Brana Plan” of ethnic cleansing in Bosnia – as explicitly genocidal.

Part of the Brana Plan – orchestrated by the Yugoslav People’s Army – was to forcibly impregnate female Bosnian Muslims, with the intent that their wider community would disintegrate. Formal recognition of these acts as genocide would strengthen legal sanctions against perpetrators, while confronting a historic wrong.

A similar response to the plight of those who find themselves in the most intolerable circumstances could avoid future injustices and crimes against humanity. We already formally diagnose those with illnesses of the body to prevent physical death. It is time we put more effort into recognising the symptoms of ill-being – so we can prevent social death, too.

 

Facing the future alone

By Liz Lloyd
University of Bristol

Simone de Beauvoir once said:

‘Nothing should be more expected than old age: nothing is more unforeseen’.

This encapsulates perfectly the unforeseen nature of ill health and decline prior to death, which for the vast majority of us occurs in old age. Researchers often find that older people are reluctant to engage with the topic of death or at least, it requires a particularly engaging researcher and carefully crafted research tools to generate in-depth responses.

Widowhood has usually been researched from the perspective of a bereaved person after a death has occurred. Examples include accounts of the time around the death, examinations of widows’ resilience and coping strategies as well as their level of satisfaction with the circumstances in which their partner died (see for example the work of Kate-Mary Bennett and Laura Soulsby at Liverpool University).  Recently I have been researching literature on the giving and receiving of care between older people and linking this to the question of impending widowhood (understood in its broadest sense as the loss of a partner or other person equally close). This has inevitably raised a question about anticipation of widowhood, either because the individual who is cared for is on a trajectory towards death or because the carer is anxious about who will provide care if they die first.

Image via http://www.md-health.com/Early-Signs-of-Dementia.html

Examining how older people with health problems look to the future was one of the aims of a recent research project at the University of Bristol. The Maintaining Dignity in Later Life project was not particularly focused on couples, but as there were 18 married/cohabiting/civil-partnered participants out of a total group of 34 questions arose about the particular circumstances they experienced.

In one interview that I conducted with a couple in their eighties – we’ll call them George and Pat – the following exchange came up:

Liz: ‘So, looking to the future, have you thought about where you would go to get more help or support?’

George: ‘Well if something should happen to either of us, I suppose we should have to have a nurse or something’

Pat: ‘When the time comes, it’ll come and that’s all there is to it’

This wasn’t the first time that I have encountered the view that Pat expressed.  ‘Living day to day’ is a common response and it’s not really surprising.  Not spending your time thinking about the future can be a protection against the growing realisation of the shortness of time left. In this interview, the phrase that continued to circulate in my mind was George’s:  ‘If something should happen to either of us’: If not when.

Widowhood might be understood as one among the many fears about the future and about death. Facing the future alone after years of a relationship is be painful to contemplate. My parents used to have a play argument: ‘I’m going first;’  ‘No I’m going first’.  For them, the prospect of death was buffered by a strong belief in an eternity in heaven, yet neither wanted to face the prospect of widowhood in their remaining time on earth.

Caring responsibilities and the need for care can force an individual to think ahead and plan for the future. We know that long term illnesses, such as Alzheimer’s or Parkinson’s disease generate anticipatory grief and a diagnosis of incurable illness engenders a sense of urgency. In Bennett’s research, a participant, Mrs T, described such an event:

‘He knew and I knew and he was marvellous. He got everything done so that he kept saying, “I’ll leave you okay, we’ll have this done and that done”’.  

On the other hand, the more general complex long-term conditions that many older people experience do not encourage looking ahead, especially when punctuated by episodes of illness from which individuals recover.  This was evident in our study when Robert (aged 83) talked about their need to move to a care home together ‘soon’ so that his wife would be better able to adjust to change after he died. Sadly, they left it too late and he died in hospital within a year. Decisions such as Robert’s typically take a long time, sometimes generate tensions within couples and are even worse when the alternatives appear bleak.  Philip (aged 88) said,

‘If my wife falls by the wayside I will have to seriously think about getting myself into a care home’. Philip remained unsure about this because ‘when that door closes you don’t know what happens’.

Far from engendering a sense of security, as Philip found the care system actually compounds the fear of the future because of what might happen. It has become part of the great unforeseen that we face in old age, which is capable of change and which should change.

 

“Just throw a match at me and light me up…..”

By Dr Kerry Jones

These were the words spoken repeatedly by someone anticipating the end of their life, yearning for it, but not achieving it, that is not when they felt it should happen. Their life was a long life which ended in hospital and was preceded by considerable time in a ‘care’ home. Except it wasn’t really their home, not the one they wanted which was to be surrounded by friends and family already long dead. The preference we hear is to die at home, but where then for those whose ideal ending is not at home because it feels like it belongs to someone else and is shared by many, several of whom represent strangers? The hospital then was the departing place, a site of visitation, of cards that could be left as tokens of gratitude for warm hugs through long nights and of long days in the park and the invitation to say goodbye, to let go, to be at ease and return to those long since gone… to go into that good night.

 

There is no perfect place to die, at least not yet…..we have a long way to go. It is something we are striving to achieve, that and a good death and whatever that means to who and for what reason. Yet, if death invites and brings compassion, gratitude and a real sense of having felt and known a treasured other, then that will have to do for now.

 

“Listen to me….”

By Su Chard
MSc student and Independent celebrant.

Two events over the summer have given me much food for thought. They were the death of a friend and being part of a funding application for a project helping people to tell their stories so that they weren’t defined, at their funerals, by their dementia.

Both experiences re-enforced for me that empowering people means we have to listen. Of course that is a given but we have to listen out for what is not being said, too and to ask why.

My friend was 94. She had been planning her death for about 20 years. Those that were close to her were drilled in the final plan regularly. She had made being bossy an art form.

My role was to be vigilant. If her curtains weren’t open by 11 each morning I had to let myself in and make sure she wasn’t dead. I was regularly put through my paces so she was sure I knew what I had to do the day the curtains remained closed.

Her desire was to die “conveniently (meaning very soon), cleanly and in her bed.”

In June she was told she had about a month to live. The three of us on the

“Death task force” were set to work following her instructions that now, after all our rehearsals, changed constantly.

The list was:

Get her discharged from hospital….check.

Get her a room with a view….check.

Tell everyone she wanted to die alone and didn’t want visitors…ah!

We did as we were instructed, people told us they understood completely but still continued to visit because obviously we didn’t mean them.

We tried to be subtle, we tried Quaker plain speaking, I was bloody rude once and still they came, as did the cards and the flowers. I even took flowers, I had to, she had had my first bunch of sweet peas for the past 10 years why would I stop now… Surely she didn’t mean me?

Although a widow and without children she had a large network of people in our Quaker community who loved her. She said she never felt lonely.  But what became very clear to the three of us in her last two weeks was that she wanted this last challenge all to herself.  She even struggled with the intrusion of palliative care visits but put up with them as she saw their only role as hastening her death.

Eventually she dug deep for one last “bossy” moment.  She sent her first and last email,

Friends – thank you all for all the love and affection, comradeship and patience and understanding and so much else you have given me over the last 30 years or so. I hope there may be at least a week or two left which will give me time to get in touch with many of you, but I will need time to myself as well.”

But still they came not seeing the code in the message that she would do the contacting and so we had to send another email

W has asked me to convey that she knows that she is loved.  Two weeks on from her message, she has reached a place where our phone calls, cards, photographs and visits are having the effect of preventing her from feeling able to let go. She asks us now to hear her need for stillness.

The visits just kept proving she was loved and she wanted to stop having to reciprocate that love.

She died alone in a white, card and flower free room looking at a very English landscape eventually, getting her own way.  She asked for this in so many ways and we heard but took a long time to listen.

As this story was unfolding I was also working on a funding bid. The funders wanted everything in the project to be about the true voice of people with dementia, not their family or carers voices but “the voices of the dementing”, their words not mine.  They wanted it to be “ real” and  “authentic”. They wanted to give a voice to the unheard “dementia community.”  I found myself confused and angered by their needs for this project.

As a celebrant with every funeral I write and deliver I hear of people who have lived their lives with no opportunity to be heard or have their say let alone to be listened to. They have not passed stories on to their children or even partners, sometimes.  The historical context of being born in the 20s means that most of society was not asked for their opinions very often. We, on the other hand, expect to be heard, to have our say, to tweet and blog and vote and wear our hearts on our sleeves and we are the ones with the expectations for choices about our deaths.

So as we all look at how we offer these choices and I believe, of course, that we should, I hope we can remember that my friend was a strong, very bossy, intelligent woman who had found paths to opportunity. She had the skills to find a way to be heard but my working life offers me contact with many people who don’t plan because no one listened before and are confused as to why we should start doing so now. They weren’t offered the skills needed for getting your own way. They truly mean it when they say; they want to go as they have lived their lives, without a fuss.  We want more for them.  But finding out what the more is comes from quality listening and considering their silences too.

A 98 year old widow said to me recently,

“They were lovely at the hospice but they kept asking us questions we didn’t know the answers to. He was there to die we had expected them to know what that meant and how it should happen.”

“It takes community…”

By Dr Max Mackay-James 

I rarely make really important decisions on my own and without talking with somebody. I also know from experience that if I don’t discuss an important decision with anybody, it can often end up being a bad one, and there will be unforeseen consequences on myself and other people which I never thought of at the time. Like most people I like to talk over an important decision with people I care about and trust. I value listening to other people’s opinions and advice, and sometimes I discuss the options in detail so I can see what they look like. I especially like giving myself time to consider before I decide: after all most important decisions take time to ripen before they are ready!

“It takes community…”.

I heard this phrase in a Diealog peer support group as I was in not so long ago. Diealog programmes are run by the charity* I look after which works to grow community-centred caring networks, and the peer support groups involve local people who meet regularly to talk about all aspects of ageing and dying, and to support each other. The local people in a Diealog group can include family, friends, neighbours, and sometimes people who share a ‘special interest’ – for instance, perhaps some people in a patient group. The groups will nearly always include at least one person with a serious illness. The talk is open and honest, and we give each other permission to raise any topic we want to within ground-rules of confidentiality which have been agreed in advance, and some other guidelines for reflective practice and co-facilitation.

We quite often talk about our fears of losing control and our independence as we age and decline, and during the process of dying with a terminal illness. This will nearly take us into our concerns about not being in control or being involved in decision-making about our care and the place we want to be in and everything else we think we will want at the end of our lives. We worry about the frailty of age which we know is commonplace as we grow older, and especially about dementia and other forms of cognitive impairment which may very well make us unable to make decisions or perhaps even talk to people about the things that matter to us.

Community via http://www.bethjacobatlanta.org/upcoming-community-events.html

“It takes community…”. The speaker was a younger member of our group.  I have seen the age range reported in the literature for similar to Diealog peer support groups as being between 7 and 95: the speaker in our group was not as young as 7 but she was under 50! There was quite a long silence in the group after she spoke. We had been talking about decision-making again, and this time we had run out of steam talking about how we thought would practically keep control and maintain the independence we said we wanted for our end of life decisions and living. We didn’t know the answer. Then she spoke.

In the silence I remember beginning to sense the quality of sadness I was feeling about the future loss of my powers transforming into a feeling of joy. The joy was simply arising in the awareness that this younger person had heard me along with all the others in the group, and she might be there one day in the future as part of my community to tell those caring for me what she had heard in this conversation. This transformation did not replace my not knowing the answer to how to be in control of decision-making, but it brought back a flow to the turbulence and added the possibility of creative effectiveness.

Yes, I thought, it takes community… my ageing and my dying, and decision-making is not something separate from other people. It belongs here too.

*Conscious Ageing Trust (Reg’d charity 1120811)

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.

Dementia Care Mapping, developed by the University of Bradford

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

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.

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

“Living longer”, is that good news?

by Jana Kralova
University of Bath

We will live much longer than any other generation before us. Is that good news? Have you asked yourself what does “living longer” actually mean? In what condition will you be in when your time for “living longer” comes? And how much of your life does this phase amount for?

For about first decade following your retirement, you are likely to be in fairly good condition and thus be able to enjoy a rather good quality of life. It is that time when people often go travelling, write books, enjoy their families, hobbies and so on. That is a good time. And it used to be the case that we would die at the end of that decade. Fairly worn out, but quite happy. Peter Laslett (1991) calls this the third age.

However, nowadays we may live extra decade, two, or even three. Yes, we can make arrangements and prepare, be financially secure and so on, but (!) is that really going to make the difference to our quality of life?

It is typical that with your withering health and independence some kind of accident will occur, usually a fall. As a result of it, you tend to be hospitalised or cared for for some weeks or even months. You may have to go to respite care for some time or you may need to move to a care providing facility. Your inability to maintain your routine will further exaggerate your deterioration all of which will limit your ability to take part in everything that you have been; spouse, grandparent, volunteer etc., as well as majority of what you found the joy in; your hobbies or going out.

So this “living longer”, what do you think it is like? The bedroom decorated with few meaningful belongings, the bed – with you in it, the window and four walls. If you are in what academics call the fourth age, you will be very frail, possibly doubly incontinent, your sight, your taste, your hearing, your ability to orient yourself in time and space may all be severely compromised. You may be experiencing a lot of physical as well as emotional pain. Even if you are in fairly good condition, your ability to do things will be minimal, but you will have a lot of time on your hands to think.

Think over and over again about your life. All the things that you have done right, all the things that you have done wrong, of all the people that you have loved, but also of all of those that you have hurt and can no longer say sorry to as they are either dead or lost along the journey of life. You may have a regrets that will haunt you, you may wish you had lived your life differently. Such a thoughts may be quite distressing and have been termed biographical pain by Prof. Malcolm Johnson.

Alternatively, it is just as possible that you may develop some form of dementia.  Although there is valuable data from research, even more experience of the family members and carers but still, do we really know how that person feels? How will you feel? How about if we are at times completely aware of our unawareness at other times?

As a result of these processes you will become very dependent on your carer; the majority of us will. That is not only for food and hygiene but also for the human contact and the daily interaction. With the majority of your family members  overcommitted with work load, families, living in different countries or simply busy, it is likely that for anything from few days up to a decade or even longer your quality of life may depend on a person who doesn’t really know you, who is likely to be paid very little but upon whom your quality of life is likely to depend.

Are you hoping that paying a live-in carer or private care will guarantee you a good quality of life? But how about this biographical pain and lack of social contact?  Simple things such as; a heartfelt hug, a meaningful conversation or a cup of tea just the way you like are amongst  the most painful losses that we may encounter during our “living longer”. And how about if in order to “save your life” upon your development of diabetes you will be deprived of your favourite sweets? And in order to reduce your blood pressure you will no longer be allowed butter on your toast or that morning cup of coffee? And of course, for hygiene purposes you will be having to undergo that bed wash every morning, during which you will freeze no matter what is temperature in the room at the time because your circulation is no longer able to warm you up. In fact, you may be cold for the rest of the day, this does not really occur to many. And would they put your make up and do your hair the way you used to do for last seventy odd years? Will you have a chance to choose your TV channel or your type of music? Will someone take you outdoors?

Once as a carer I was asked by a man who could be said to have been in fourth age and with advanced dementia whether I would go out for dinner with him. At the time I thought “oh bless you” and politely refused. However, looking back at it now I wish I had taken him out. Although from procedural and practical point of view it would have been impossible. Now I understand, but it is too late, John is dead. He liked his coffee fairly strong with two spoons of sugar and a cigarette. No, it wasn’t good for his health, but it made him happy.

Hence my question to you: is “living longer” good news?

Inside the DOLS house

By: Jeremy Dixon, University of Bath

Dr Jeremy Dixon considers how the Deprivation of Liberty Safeguards might be experienced by dementia sufferers receiving end of life care

A key dilemma in health and social care has always been finding the correct balance between care and control. Older adults suffering from dementia may be subject to a range of controls whilst in hospitals or residential care. These controls might come in the form of electronic locks on doors, being given psychiatric medication or in individuals not being allowed to go out alone. In the past few years, the government has taken steps to address the legal rights of those subject to such controls.  In this blog I consider two issues.  First, I will look at how this problem around control has been dealt with in law.  Second, I will consider whether these controls are likely to improve the kind of care that people with dementia receive towards the end of their life.

It is a well-established in law that individuals should not be arbitrarily deprived of their liberty.  Following a challenge in the European Court of rights in 2004 [1] the Government realised that it had to take steps to make sure that people who the lacked mental capacity to make decisions about their admission to a hospital or care home were not being inadvertently detained there.  To make sure that an individual’s ‘right to liberty and security’ under The Human rights Act was met the government introduced a procedure known as The Deprivation of Liberty Safeguards (often referred to as DOLS)[2]. This procedure was added to The Mental Capacity Act 2005, coming into effect in 2009.

In practice, The Deprivation of Liberty Safeguards have always been a cumbersome procedure.  Hospitals and care homes are expected to identify where they believed that they might be depriving someone of their liberty.  In cases where they feel that care cannot be provided in a less restrictive way they are required to ask for an ‘authorisation’ by a ‘supervisory body’ in their area (the local authority or the local health board).  The supervisory body then arranges for the person in question to be assessed in order to establish whether a deprivation of liberty is lawful.  The assessment itself requires at least two assessors, one of whom must be a qualified best interests assessor and the other must be a doctor.  The assessors consider whether a range of conditions are met focussing on the person’s age, mental health, mental capacity, best interests, eligibility (whether they should be detained under The Mental Health Act 1983 instead) and any previously written refusals of treatment.  After making their assessment, the assessors report back to the supervisory body who decide whether or not to grant an authorisation.  This process currently consists of assessors completing 13 forms (reduced from an eye watering 32 forms at the beginning of 2015) [3].

Despite the complexity of the above procedure, there has until recently been a lack of clarity about how a deprivation of liberty should be defined.  The Supreme Court sought to resolve this in 2014 in response to two challenges to the UK courts [4].  The Court stated that considerations such as the purpose, ‘relative normality’ of placements or whether or not a person was objecting to their living arrangements should not be taken into consideration by authorities deciding whether a deprivation of liberty was taking place.  Instead, the Court of Protection introduced an ‘acid test’ which set a new threshold for deprivation of liberty.  The ruling stated that a deprivation of liberty was taking place in cases where the conditions stated above were met and

• the person was under continuous and
• was under continuous control and
• was not free to leave.

The use of the DOLS has risen year on year since their introduction.  The most recent annual figures state that, 212 individuals per 100,000 of the population aged 85 years of age or over are subject to a Deprivation of Liberty Safeguard (Health and Social Care Information Centre, 2014) [5].  The figures published in 2014 do not cover the period since the Supreme Court judgement which effectively lowered the legal threshold as to what constitutes a deprivation of liberty.  This means that we can expect to see a sharp rise in applications over the next year, with local authorities predicting a ten-fold increase [6].

However, I now want to consider whether the controls are likely to improve the type of care that people with dementia receive towards the end of their lives.  A number of criticisms have been made against DOLS since they were introduced.  I focus here on some of the criticisms that may have an impact on care provision.  The first point I want to raise relates to the clarity of the legislation.  In order for a piece of legislation to benefit members of the public they must be able to understand it.  However, a number of legal experts have pointed to the fact that the DOLS procedure is not easily understood.  For example in a ruling in 2011 Judge Peter Jackson stated that,

“It is a truly unhappy state of affairs that the law governing the fundamental rights and welfare of incapacitated people should be so complex.  As this case shows, its intricacies challenge the understanding of professionals working in the field and are completely inaccessible to those for whose benefit the legislation has been devised” (cited in Jones, 2012, p. v) [7].

Similarly, the House of Lords Select Committee on the Mental Capacity Act (in its post-legislative scrutiny in 2014) commented that DOLS legislation had become so complex that the Government should scrap it and start again [8].  To some extent the Government has recognised the need for reform in this area and has commissioned a review by the Law Commission amongst other things [9].  However, it remains unclear whether individuals suffering from dementia are aware of the legislation and whether they understand it.

Second, I would question whether the DOLS procedure can be applied in a person-centred or sensitive manner by assessors.  It strikes me that as a result of the Supreme Court ruling many more people coming to the end of their life are likely to require a DOLS assessment.  For example, it is fairly common for a person with advanced stage dementia who is receiving care to require continuous control and supervision and for them to be restricted in terms of leaving the building.  Whilst a DOLS assessment might make their detention legal it is less clear whether it will improve the quality of the care that they receive.  Furthermore, it is likely that many families would not see the person as being deprived of their liberty, so a DOLS assessment in these circumstances may be experienced as a bureaucratic or insensitive exercise when taking care towards the end of an individual’s life.

DOLS procedures have been introduced by Government to ensure that individuals lacking mental capacity are not unlawfully detained.  The procedures put in place are both costly and bureaucratic.  However, we continue to know very little about how they are experienced by individuals with dementia and their families.  I hope that our proposed research on dying with reduced capacity will enable us to examine how aspects of mental capacity law such as DOLS are experienced by this group.

Dr Jeremy Dixon – Lecturer in Social Work
University of Bath
14.07.15.

[1] This case is known as HL versus UK.  See http://www.mentalhealthlaw.co.uk/HL_v_UK_45508/99_(2004)_ECHR_471 for further details.

[2] The Law Society provides a useful summary at http://www.lawsociety.org.uk/support-services/advice/articles/deprivation-of-liberty/

[3] See http://www.communitycare.co.uk/2015/01/09/deprivation-liberty-safeguards-paperwork-cut-unnecessary-forms-scrapped/

[4] See https://www.supremecourt.uk/decided-cases/docs/UKSC_2012_0068_Judgment.pdf

[5] Health & Social Care Information Centre (2014).  Mental Capacity Act 2005, Deprivation of Liberty Safeguards, England.  Annual Report, 2013-14.  Leeds: Health & Social Care Information Centre.

[6] See http://www.local.gov.uk/documents/10180/11779/Follow+up+to+Norman+Lamb+re+-+Deprivation+of+Liberty+Safeguards+(DoLS)%20pressures/bb7de7c4-7d9e-4bae-b23b-4821f8c9cbc1

[7] Jones, R. 2012.  The Mental Capacity Act Manual.  Fifth Edition.  London: Sweet and Maxwell.

[8] See http://www.publications.parliament.uk/pa/ld201314/ldselect/ldmentalcap/139/13902.htm

[9] HM Government (2014).  Valuing every voice, respecting every right: Making the case for the Mental Capacity Act.  The Government’s Response to the House of Lords’ Select Committee Report on the Mental Capacity Act 2005.  London: The Stationery Office.  See https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/318730/cm8884-valuing-every-voice.pdf