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.

 

“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.”

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

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

Awareness and decision making at end of life

By: Christine Valentine (University of Bath)

My desire to contribute in some way to raising awareness of and improving decision-making and support for those who are dying at the end of life with reduced agency is both academic and personal.

Having had the privilege of interviewing a large number of bereaved people and studying the way they made sense of the death of someone close I have always been struck by how this included retrospectively constructing dying trajectories that were designed to affirm the deceased person’s agency or that the dying belonged to/was characteristic of that person. Arguably, this attributing of ownership of dying seemed to be almost more important than whether or not the person suffered in enabling the bereaved person to find a way of living with the loss. In other words it confirmed Cicely Saunders’ assertion that the way someone dies has a profound and lasting effect on the grief of those left behind. It is of course a two way process in that it also depends on the way those left behind are able to make sense of that dying.

However, though our powers of meaning making may be considerable, this does not negate the impact of social context, including predominant discourses. While the notion of taking charge of one’s dying may appear to resonate with neoliberal individualism and the emphasis on personal choice and self-responsibility, what the people I interviewed were actually talking about was much more subtle, nuanced and profoundly relational. In other words, agency in dying was dependent on the understanding, involvement and support of others, family, friends and professional carers.

An important part of this support, particularly in cases of older people dying with reduced agency, is being able to pick up on and respond to those gestures that reflect the dying person’s uniqueness or ‘personhood’,  in spite of the impact of, for example, dementia. This is what I learned from interviewing bereaved people, as well as being something I experienced more personally last year over a period of 4 months when my mother was dying from dementia. It was only then that I really understood that being preoccupied with preserving the dying person’s uniqueness, and therefore their dignity, was down to the context in which that person died. Today that context is an increasingly complex, multi-agency one in which the needs of both the dying person and the family may frequently become subordinated to the ‘system’.

By the ‘system’ I am referring to what I experienced when my mother was dying, which involved feeling at the mercy of disparate services, that is, having different agendas and individual practitioners sending mixed and contradictory messages about whether the intention was to help my mother die or, remarkably, given the seriousness of her condition, get better. Indeed, it is only relatively recently that I heard on the radio that dementia had now been defined as a life threatening condition.

Also, in budget cuts, the way my mother’s dying was managed was inevitably influenced by economic considerations. While we knew that this was the case as well as that Mum was dying, it was still confusing and difficult not to get caught up in wishful thinking that perhaps we were mistaken and she would ‘pull through’ (for example, with the OT insisting that my 89 year old, bed-bound mother be lifted into a wheelchair and sent along to an exercise class). Indeed, it was only the GP who seemed to have grasped that dementia was actually killing her, while everyone else seemed to be trying to build Mum up in order to justify sending her home in spite of her clearly being at risk. Indeed, she died sooner than we had anticipated, in hospital, after being rushed in for the third time in the few weeks since being sent home.

Though I am inevitably cutting a long story short, it is one that has made me more aware of the complexities and challenges involved in end of life decision-making in relation to frail elderly people with reduced agency. However I believe that the importance of that decision making cannot be emphasised enough, both for the dying and for those left behind who will be affected by it, often for years to come.

As Glennys Howarth asserted 17 years ago in an article that challenges assumptions that dying in old age is ‘natural’ and therefore ‘easier’,  “People of all ages need to be helped out of life just as they should be helped into it – with sensitivity, care and support” (Howarth, 1998:688).

Howarth, G. (1998) ‘Just live for today’. Living, caring, ageing and dying, Ageing and Society, 18, 673-689