‘Caring until the last moment of your life’ by Louise Rogers

You matter because you are you, and you matter to the last moment of your life.” Dame Cicely Saunders

I remember sitting with my mother’s cousin in hospital, towards the end of her life. When the rest of the family was out of the room I enquired how she was feeling, how she was feeling about dying. She said that she was scared – she would lay awake at night thinking about it. A hospital bed is a lonely place to be at night. We started to have an intimate conversation and then the family returned. The talk returned to the everyday, laughing and joking trying to lift spirits and steadfastly ignoring the elephant in the room – our beloved family member was dying. No amount of cheering up would make a difference to this.

I was sad that no-one seemed to be willing or able to listen to the fear and anxiety, to engage in one of life’s big questions – what do I make of my own dying? It seems that my family are not alone in this according to the research commissioned by the Dying Matters Coalition in 2011.

Someone who is passionate about improving the way that we die is Dr Peter Saul who is a senior intensive care specialist at the John Hunter Hospital, Newcastle, Australia and an advisor to the state and federal governments. In his illuminating TED talk about dying he says that the way we die is changing. Sudden death is becoming unusual and a slow decline because of a terminal illness is becoming less common. Therefore, the majority of us will either die through organ failure (for example our heart or lungs) or 60% of us will have a gradual decline. There is therefore plenty of opportunity to talk about our death and the deaths of our loved ones: plenty of time to make a plan.

There is a lot of information about dying a good death and seemingly lots of organisations, such as the hospice movement, which have shown how this can be achieved. But in some ways it appears to be quite separate from the world of caring, the world of trying to add quality to life and perhaps years to life. In many ways as Peter Saul suggests we have medicalised death. But is not failure when someone dies, it is the natural way of things. It is only failure if we haven’t done what we can to ensure that life has been good, right up until the moment of death. Preparing for a good death should not be an add-on but part of any good care, in particular care for older people or those with serious illness.

Workers, volunteers, family members and friends need to know how to approach this. Peter Saul, at the end of his TED video, suggests that we can start with two questions

  1. In the event that you became too sick to speak for yourself, who would you like to speak for you?
  2. Have you spoken to that person about the things that are important to you so that we have a better idea of what it is we can do?

Perhaps those of us who spend time with older people can do a bit more. We can find out what resources are available to help end of life planning, for example Final Fling. If people do not have access to the Internet we can help them with this. And maybe we can become familiar with what needs doing by starting to make our own plan. As Final Fling founder, Barbara Chalmers says, ‘Sort out your affairs …and then get on with living your life.’

‘Who cares?’ By Dr Andrew King

It’s been National Carers Week in the UK recently. It’s been well publicised in mainstream and social media, even receiving its own twitter hashtag #carersweek. I’ve read some heart-wrenching and indeed heart-warming stories and learned some useful facts, such as those provided by ONS from Census data. There has rightly been a discussion of hidden carers.  Yet despite this, I have seen very little, indeed next to nothing, about informal caring relationships that take place between lesbian, gay and/or bisexual people (LGB). Unfortunately, this sort of invisibility and implicit heterosexism is nothing new. There is a growing body of literature, including academic, third sector and activist generated studies that points to the invisibility of older LGB people in general and older LGB carers in particular. There are some on-going and important projects which have tried to increase the visibility of older LGB people and their needs, such as Age UKs excellent ‘Opening Doors’ and work in public sector organisations, and projects about specific issues like end-of-life care.

Yet research, including my own, demonstrates that caring relationships amongst older LGB people, what we might refer to as informal care relationships within chosen networks, or ‘families of choice’ (Weeks et al., 2001; Weston, 1991) are both very important and diverse, more so than heterosexual people’s. Research shows that older LGB people rely more on friends and partners for support in later life. But it’s important not to simplify and to capture the levels of complexity that are apparent in older LGB people’s lived experiences of informal care. It’s why I think a relational approach is needed because it shows that roles and identities such as carer and care recipient are rather too simplistic. I discuss this approach further in a chapter I’ve written in a forthcoming book ‘Mapping Intimacies’. To give you an idea of what I mean, here is the story of two older gay men, Alec and Peter.

Alec and Peter first met in the late 1970s. Peter supported Alec physically, emotionally and financially. For instance Peter helped Alec visit various private doctors and specialists, obtaining better care for him, until his underlying medical condition was stabilised; he nursed him when he was particularly ill; he helped him cope with the psychological stress of his chronic illness; and when Alec had to retire early on health grounds, Peter continued to support him financially. Hence, it would appear that Peter has for many years taken the role and identity of being Alec’s carer. However, when they first met Peter was struggling to come to terms with his sexuality. He felt that his family, particularly his father, did not understand his sexuality and would not accept it. Dealing with this led him to a local lesbian and gay support network where he met Alec. He helped Peter to accept his sexuality and viewed in this way, he can be seen as caring for Peter psychologically, whilst Peter tried to support Alec with his chronic illness. Recently, Alec has suffered from further ill health and Peter, although continuing to work, has also suffered periods of illness. Peter is learning to cope with Alec’s increasing infirmity, whilst Alec faces coping with Peter’s growing depressions and frustrations.

So, let’s see much more of presence of carers who are not heterosexual in the next Carers Week, but let’s not forget that the distinction between carer and cared for is also complex, especially when we look at the experiences of communities who have traditionally (and still are) invisible and marginalised!

Weeks J, Heaphy B and Donovan C. (2001) Same-Sex Intimacies: Families of Choice and Other Life Experiments, London: Routledge.

Weston K. (1991) Families We Chose: Lesbians, Gays, Kinship, New York: Columbia University Press.

Caring about mental health inequalities, by Professor Elizabeth Peel

Previous research indicates that, compared to heterosexual people, LGBT young people are more likely to attempt suicide, lesbian and bisexual women are more likely to have drinking problems, and gay and bisexual men are more likely to have body image disorders. Therefore the Risk and Resilience Explored (RaRE) study, funded by the Big Lottery (2010-2015), explores these mental health inequalities in LGBT people in England. The project is led by PACE Health, a London-based charity, in partnership with Prof Elizabeth Peel (University of Worcester), Prof Ian Rivers (Brunel University) and Allan Tyler (London South Bank University) and aims to address the following questions:

  • Which LGBT people have these problems?
  • What are the risk/predictive factors?
  • What are the resilience/protective factors?
  • How do these vary between the study groups and between the study groups and their heterosexual counterparts?

The team has just launched a large-scale Health and Wellbeing survey that is open to anyone over 18 living in England. People of all sexualities whether or not they have experienced mental health problems can participate in the research via https://www.surveymonkey.com/s/a_RaREStudy This offers an opportunity for those who care about understanding health inequalities to share their experiences and perspectives. For more information about the RaRE study contact the project coordinator Nuno Nodin: nuno.nodin@pacehealth.org.uk .

 

Elizabeth Peel

Professor of Psychology & Social Change

Institute of Health and Society

The University of Worcester

Henwick Grove, Worcester, WR2 1AG

Email: e.peel@worc.ac.uk

 

Care as a Value and Valuing Care, by Professor Marian Barnes

The Observer on 8th June published a story demonstrating the impact of recent Government changes to housing benefits. As a result of being forced to move from Westminster to Brent because of benefit changes, Hanane Toumi and her young children aged 6 and 3 have to travel 5 miles each morning to get to school and nursery, before Hanane then travels to another part of London to work as a cleaner.  It has not been possible to get a school place near their new accommodation and nursery places are more expensive. Local government officers in Westminster and Brent have acknowledged that the situation is ‘not ideal’, but do not accept that the exhaustion and emotional impact resulting from this are a reason for reviewing the family’s situation.

Benefit changes introduced by the Coalition Government in the UK have been roundly condemned. But Ed Miliband’s announcement that an incoming Labour government would put a cap on the overall cost of benefits doesn’t inspire hope that too much would change.  What does this say about the value attached to ‘care’ by politicians and local officials? The Observer story was framed in relation to evidence that, rather than costing less, the financial cost to the state of homelessness is going up because of the costs of funding temporary accommodation for low income families in wealthy areas.  But implied within the story is the lack of care shown by the state about the everyday lives of women such as Hanane and her children. As a result of government decisions at national and local level Hanane’s capacity to care for her children and herself is severely compromised. Her daughter falls asleep at school and her emotional welfare is suffering.

Care ethicist Eva Kittay has named ‘epistemic responsibility’ and ‘epistemic modesty’ as fundamental principles for the ethical conduct of philosophy and I have suggested we should similarly apply these principles to the making of social policies. If policy makers neither know about or understand the circumstances and consequences of the policies they make, nor care about the lives of those impacted by these policies, then policy will not only be ineffective but unethical. Joan Tronto named ‘competence’ as one dimension of care and the experiential knowledge of those who live in poverty, and experience at first hand the impact of government policy, is essential to shaping  policies that are attentive to people’s everyday lives. But the Coalition government has proved itself to be unconcerned about making policy on the basis of ‘evidence’ when it comes to benefit changes. And the Labour leadership appears reluctant to articulate a value based approach to welfare.

Unless politicians and public officials recognise that they should care, that caring involves knowing what you’re talking about, and that care is a value that should guide social policy, experiences such as that of Hanane Toumi and her children will simply not be seen to matter.  Naming care as a value as well as valuing care are equally essential.

12/6/13

Marian  Barnes

Professor of Social Policy
School of Applied Social Science
University of Brighton
Mayfield House
Falmer, Brighton BN1 9PH

Barnes, M (2012) Care in Everyday Life: an ethic of care in practice, Bristol, Policy Press.

Kittay, E. F. (2010). The Personal is Philosophical is Political: A Philosopher and Mother of a Cognitively Disabled Person Sends Notes from the Battlefield. Cognitive Disability and its Challenge to Moral Philosophy. E. F. Kittay and L. Carlson. Chichester, Wiley-Blackwell: 393-413.

Tronto, J. (1993). Moral Boundaries. A Political Argument for an Ethic of Care. London and New York, Routledge.

What price care?

There have been a couple of interesting articles in the UK this week about paying and motivating care staff. An article in Community Care this week highlighted that many UK care providers are not paying employees properly:

http://www.communitycare.co.uk/articles/31/05/2013/119218/investigation-into-90-large-care-providers-finds-many-are-flouting-pay-laws.htm

This of course goes to the heart of valuing care and carers, notions of care as a commodity, and considerations about under-funded care services and underpaid staff.

Another article in The Guardian this week, suggested employee ownership of care organisations is the way forward:

http://socialenterprise.guardian.co.uk/social-enterprise-network/2013/may/31/employee-ownership-social-care

The staff, some of whom only work a day a week all have a personal financial ownership of the care organisation they work for. It’s an interesting idea. Is social enterprise really the solution to care’s woes? Or is it just another form of marketisation of care and is something more radical required?

Antipsychotic medications in dementia – time to think again about regulation?

Along with my colleague, Elizabeth Peel, I was invited to write a post for the OUP Blog highlighting the arguments in a paper of ours that was recently published in the Medical Law Review. The blog post draws out several of the arguments from our paper (which is open access for a short period: download it now!), and yet no-one seems to have taken much notice. When we were invited to write for the blog, we were told that the blog has 8,000 subscribers and has over 40,000 visits every month. So why would a contribution on this important issue not make much of a splash?
There could be all sorts of reasons – perhaps it’s not quite on the zeitgeist of where the media focus is on caring for people living with dementia; perhaps the argument in the paper is too ‘legal’ and so not quite amenable to media interest in the blogosphere; perhaps the recently reported reduction in antipsychotic prescribing makes everyone think this is a non-issue; or perhaps until there are other ways to ‘treat’ ‘challenging behaviour’ in dementia, nobody is interested in the limitations of the current methods. It’s hard to tell. Certainly any and all of these might be contributory factors. But I think this is an important issue, and one that it’s worth shouting about, so I’m going to try again here!
In the article ‘He was like a Zombie’: Off-label prescription of antipsychotic drugs in dementia’, we argue that most antipsychotic drugs:

  • are not tested for use in elderly people with dementia;
  • are not licensed for use in elderly people with dementia;
  • have serious side effects including stroke and death when prescribed to elderly people with dementia
  • should be better regulated

We also highlight that in our empirical research, carers of people with dementia report a range of other harms associated with the use of this class of drugs to treat behavioural symptoms in the people they care for. In the paper, we explore the potential for legal redress for these harms and find that there is little or no chance of legal claims being successful.
As we think again about how people who can’t stand up for themselves are vulnerable to abuse at the hands of the professionals responsible for their care (for example the Winterbourne View scandal), we need to think again about all sides of the interface between care, law and regulation. The current regulatory frameworks offer little comfort to those who are harmed by ‘care’ that is not criminally abusive. So as well as thinking again about how we regulate social care, I think the antipsychotics issue demonstrates why we might also need to think again about health care and those who can’t consent to treatment. Without going into the intricacies of medical negligence, people with dementia harmed by the prescription of antipsychotic drugs to treat behavioural symptoms currently have no chance of compensation or access to justice even though it is widely known that they can be harmful. I think it is time this changed. What do you think?

Who should take responsibility for care?

A nw scheme to train a million people as ‘dementia friends’ has been announced by the Prime Minister, David Cameron, as part of the next stage of his Prime Minister’s challenge on Dementia. The scheme will be run by the Alzheimer’s Society, who are inviting interested individuals to register their interest on the dementia friends website.

Dementia Friends Logo

www.dementiafriends.org.uk

Dementia friends will be trained to help people with dementia feel understood and included in their community. The aim of the scheme is to “make everyday life better for people with dementia by changing the way the nation thinks, talks and acts.” £2.4 million has been put forward from the Social Fund and the Department of Health to fund this initiative.

There is much to commend about this scheme. If successful, it could not only help to raise awareness of the challenges faced by people living with dementia, but could also lead to positive steps in the direction of creating ‘dementia-friendly’ communities. Making local communities more dementia friendly could help people living with dementia to live more independently for longer. This scheme also helps to recognise the importance of people other than immediate family and friends in supporting and caring for a person living with dementia. All too often, caring for a person with dementia can be an isolating experience, where familial carers slowly lose their own support networks because others don’t understand the challenges that dementia presents.

It seems to me that there is also an important ideological shift associated with making caring for people living with dementia a priority for communities, rather than individuals and private families. In an ideal world, moving towards collective responsibility for care might help to off-set some of the individual costs of caring, provided the scheme offers real help and support to people living with dementia. On the other hand, we must also be alert to the possibilities that rather than increasing (state-funded) support for people living with dementia and those who care for them, initiatives that push the emphasis onto communities to support each other are also tied to the aim of reducing the financial responsibility of the state for these sorts of services.

All too often in the dementia care sector, there are excellent services for some, and limited or no services available to others depending on where they live. In my recent research into dementia carer’s experiences (see www.dementiaproject.net), many familial carers found it extremely difficult  to navigate the complex ‘maze’ of services and service providers. Let’s hope that this is a project that, if successful, will continue to be financially supported through public funds to ensure parity of access, rather than relying on charitable support that can be geographically variable.