Monthly Archives: July 2015

“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?

Advertisements

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.two empty benches

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