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

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”.

A social framework

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.

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.

Lit_match_balckhive

 

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.

“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.

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.

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.