Back in the country again and back to the computer (I’m so old-fashioned, I regard being away teaching as an excuse not to look at my emails – my son checked his emails on his honeymoon – that’s the new generation for you – but he did say that I was not to regard him as a saddo).

Catching up, the Department of Health has published a consultation on quality markers on spirituality and bereavement care in end-of-life care. You may know that NICE is consulting about quality standards in end-of-life care (not markers, notice the difference – standards are a posher form of quality apparently), but somebody noticed this did not cover bereavement and spirituality, so the DH has rushed out some lesser quality wotsits to compensate.

All this activity is a positive sign of the DH intention to embed end-of-life care in broader services.

On these particular quality markers, they suffer, of course, from the tendency to equate the existence of policies and the provision of a service with quality, rather than the actual quality of the human relationships engaged in the service provision. These are the measures:

For commissioners:

Evidence that service level agreements (which include explicit contract monitoring requirements) have been established with provider organisations.

Contract monitoring to include requirements for providers to:

- Gather feedback from service users, including an agreed measure of outcome achieved as appropriate to the service being provided

- Audit service uptake

- Monitor waiting times (as appropriate)

Providers to share this information with commissioners at the agreed time;

Service specification and needs assessment documentation to be available.

For providers:

Service user feedback on the availability, timeliness, usefulness and appropriateness of support and information provision;

Audit of documentation showing whether information was offered to the carer/family member;

Tell Us Once services developed in partnership with Local Authorities.

Documentation showing that a clear, agreed pathway is in place;

Audit of service provision demonstrating implementation of this pathway, including appropriate onward referral;

Agreements in place with other providers to enable appropriate onward referral.

Evidence of general introductory training, incorporating dealing with loss, grief and bereavement, being made available to, and accessed by, all staff;

Evidence of the use of competences as part of appraisals and professional development plans for staff directly involved in bereavement assessment and care delivery.

Organisational HR policies include provision for staff and volunteers who have been personally bereaved, or have been affected by death and bereavement in the course of their work;

Audit of support, counselling and supervision available to, and level of access by, staff and volunteers in the workplace, including those who have exposure to, and are affected by, death and bereavement;

Audit of staff and volunteer feedback on the service.

The human resource policies focusing on support for staff and volunteers are a welcome recognition that this can be a personally demanding area of practice.

And it’s of note that the idea is spreading of developing a widely-understood ‘pathway’ as a way of integrating services. So local serviecs would understand the normal progression from having a relative who has died, through immediate responses to bereavement on towards more specialised care required in a relatively few cases. I have my doubts whether this is relevant in a very broad area of need, such as bereavement, where there are many social and community responses. Integrated care pathways developed from the need to coordinate disparate professional services in a clearly defined condition with a recopgnised progression, such as Parkinson’s disease. I think it’s less clear that this form of coordination is appropriate for issues such as bereavement and even less so with something like spirituality, which should be integrated into what every prcaititoner does in relation to the end of life.

And as we have seen in the recent fuss over abuse in a hospital for learning disabilities, you can have all sorts of services and agreements, but no human response to the needs that have to be met and no real acceptance of managerial responsibility for a good quality experience for service users at any level, from  front-line staff to regulator. This is particularly important in areas such as bereavement and spiritual care, where how you do it is far more important that the systemisation of what you do.

Still, the consultation is there to respond to:

http://www.endoflifecareforadults.nhs.uk/assets/downloads/Draft_Spiritual_Support_and_Berevement_Care_Quality_Markers.pdf

Someone on LinkedIn asked about my new book, already out in the US, but coming out in the UK tomorrow (from Palgrave Macmillan: http://bit.ly/dTTf5M ). I thought readers of this blog might have an interest in the reply.

Perhaps the best thing to do to get a picture of the book is to read the excerpts on the American publisher’s website http://bit.ly/gEW2Hl. Here are some of the main points:

The book starts from the fact that we are human beings, working with human beings.

It tries to integrate four areas of knowledge about how human beings live in the world: humanism (in particular secular humanism), humanistic and transpersonal psychologies, human rights charters and the thinking that comes from them and microsociology.

From the importance it gives to human rights, it emphasises achieving social justice and responding in inequality as a major role of social work

It emphasises flexibility and dealing with complexity, whereas many systems of social work try to oversimplify human life into simple prescriptions.

It says we have an accountability for helping people use their personal skills and development in dealing with issues in their lives and also for helping people in their social context change to facilitate the personal movement that people are seeking.

Practice should incorporate artistic and creative understanding, and spirituality, as well as psychological and social knowledge.

We should be helping people to develop security and resilience in their lives.

Being at recent roadshow about the National End of Life Care Programme’s Social Care Framework means that I’ve picked up some of their other publications. I may be old-fashioned, because I could quite easily see them on the website, but actually I don’t look at things that are not directly relevant to me, so until I see them in physical form, I don’t really give them a going over.

If you need to link to the Social Care Framework, here it is:

http://www.endoflifecareforadults.nhs.uk/assets/downloads/Social_Care_Framework.pdf

If you need to find the website listing of the NEOLCP’s documents, here it is:

http://www.endoflifecareforadults.nhs.uk/publications

Bizarrely, the NEOLCP seems to use pictures of trees and flowers a lot: it seems to be symbolic of the way through the woods; either that or it’s the very cheapest stock pics. The Learning Resource Pack for staff in housing, particularly care and support staff in extra care housing, is one of these. You would expect a few pics of housing. In view of the fact that they major on pics of healthy and happy looking older people (nobody can ever look depressed or grotty in a government publication) you would think they could come up with pics of healthy and happy looking housing – actually there’s only one of these in the 40 pages. I presume their public relations people tell that that people sell things better than buildings. The weakness of this is that we are not looking to be sold something in these documents; what they should be doing is using the illustrations to show us what to do.

This document is also unusually text-heavy for the NEOLCP, and there’s only one flow-chart – can this be a first for the Department of Health?

It is clearly aimed at housing staff who don’t have a lot of knowledge of the care system. Chapter 3, for example, lists professionals who can help in end-of-life care. I, of course, turned to what it says about social workers. Here it is:

Social workers can provide emotional and psychological support especially at difficult times in people’s lives. They aim to see the individual as the “expert” and, using a person centred approach, offer support with no judgement value. They can act in a care management role as well.

How can they help?

• Assessments.

• Liaise with other professionals.

They can facilitate:

• Social inclusion.

• The person’s rights.

• The person’s choice.

• The individual’s views.

• All done with respect for the individual.

• Help the individual complete a person centred plan.

• Support the individual and their families and/or carers. (p 12)

This is probably a realistic view about what most local authority social workers do, but it doesn’t help housing workers to understand what a social worker in general might offer, if they’re a palliative social worker. And is all this respectful ‘expert service user’ and person-centred approach not also done by other people? If I were a housing worker, I might think I could do that naturally – what do I need a social worker to do it for? And don’t any of the numerous varieties of nurses not do that too (I’ll answer my question, yes they mostly do). Many of the other pen pictures of professionals are similar in their partial description, but the social worker description is particularly limited. For example, occupational therapists are acknowledged to work in a number of different settings and apparently ‘…help an individual who has a physical, psychological or social problem that interferes with their ability to carry out normal everyday activities…their aim is to enable people to achieve as much as they can for themselves.’ (p 13). Well yes, but I would think most people working in end-of-life have similar objectives and concerns.

This section illustrates the way in which many accounts of multiprofessional practice in health and social care are over-simplified, with the aim of making generalised distinctions which do not stand up – who does what in each locality tends to vary according to the settlement between professions in that area.

But the rest of the document contains good information about medication, common symptoms, mobility and the last days and hours which would benefit a lot of care workers whatever their role.

This document is produced in cooperation with Housing21, a well-experienced housing association.

National End of Life Care Programme/Housing 21 (2009) End of Life Care: Learning Resource Pack: Information and Resources for housing, care and support staff in extra care housing. London: Department of Health.

On the web: http://www.endoflifecareforadults.nhs.uk/assets/downloads/pubs_EoLC_learning_res_pack_housing.pdf

You might like this quotation on being afraid of dying, from Inkiv (Ink, Intravenous, a Tumblr blog), hence I don’t have a full citation:

It’s true, I am afraid of dying. I am afraid of the world moving forward without me, of my absence going unnoticed, or worse, being some natural force propelling life on. Is it selfish? Am I such a bad person for dreaming of a world that ends when I do? I don’t mean the world ending with respect to me, but every set of eyes closing with mine.

The book is a novel about the Holocaust: Jonathan Safran Foer (2003) Everything Is Illuminated. London: Penguin

For Inkiv: http://inkiv.tumblr.com/

For Tumblr (a blog hosting site http://www.tumblr.com/directory)

which is how I know about it because it hosts my self-positioning blog:http://self-positioning.tumblr.com.

There’s a lot of thinking about memorialisation going on, and I have posted about the research on contemporary funerals at Hull University, now finished and available in report form – presumably publications will appear.

In an interesting paper on memorials of their loved ones by individuals and families in at an anniversary of a death or at the time that someone is dying, Andrew Goodhead points up a similar theme to the funerals research. Increasingly, he says, people don’t need professional memorialisers, like ministers or religion, to mediate their response. We can see in internet memorial websites, and all sorts of informal processes, people can express their own attachments to deceased people, in a colloquial style. He points to roadside memorials and informal obituaries that you see in some newspapers nowadays – I often think the ‘Other Lives’ section of the Guardian contains more interesting presentations of what was important to people in ordinary lives than the Guardian’s sometimes bizarre selection of obscure cultural icons and forgotten politicians and film ‘stars’.

He was researching notes people stuck on a fake tree in the St Christopher’s Hospice chapel, or handed in at memorial services.

But if memorialisers don’t need professional mediation, what about the professional work of social workers helping people with their life tasks (saying goodbye, thank you, I love you, and sorry when they are close to death) or doing a life review? Is an information sheet about how to do a memory box or a salt sculpture enough?

I think that, as always, people are different and need different levels of help. Some of the complex family relationships that dissolve into vituperative conflict around a death or divorce, some of the chaotic families and seriously shaken up individuals that social workers see need a human being to work through a difficult hand of cards that life has dealt them. Others can work through their troubles by using the human capacity for adaptation (or repress them – I’m not a believer in routinely letting everything hang out). And a bit of self-improvement can take people a long way. The whole point about the human brain is that it helps us to adapt to the environment out there.

Goodhead, A. (1020) A textual analysis of memorials written by bereaved individuals and families in a hospice context. Mortality 15(4) 323-39. This sounds heavy going by the way, but it isn’t massively sociological and not theological at all, and it gives a very affecting insights into people’s feelings about their loved ones which can inform us all.

I’m doing some sessions on self-positioning soon, so I’ve created a website for these. Self-positioning is asking yourself about your position in your life in relation to other people around you. The site offers oppis (opportunities) for self-reflection, one a day, which you can do or not as you like (or just enjoy or complain about the photos), or you can do in training courses. They might be good for people just going on a training course, or going in a new direction, to think about their aims. I first started using them as part of helping students think about choices in their professional education. It’s important because I think you can’t divorce your personal experience and what’s going on for you from your professional decisions.

Get a feed from: http://self-positioning.tumblr.com/

Some screenshots:

You just get one brief question with a picture every day.

Obviously Margaret Holloway, one of the DH leads on social care whose framework document has just been published – see the previous two posts – has had a busy month. She has also finished her research on spirituality in contermporary funerals. I’ve just had a copy and it will shortly be on the University website at Hull. They visited loads of funerals and then interviewed the professionals involved and the families about their views of what happened. There’s a lot of fascinating detail in the report; even though the theoretical material will probably pass a lot of readers by. It’s one of those sociological studies that really tells you about people’s lives, but also tells you that sociologists think very complicatedly about said lives.

What it shows is that funerals are still very important to families and there are spiritual and religious ideas within them what enable people to ‘make meaning’ of their lives and the life of the person who has died. There is still a lot of ritaul, but some of it is newish and perhaps a bit secular. It was often about celebrating and remembering a life, and while people could be sombre traditional religious music and hymn-singing was by no means universal.

I know this from singing in the choir at weddings: not a lot of the congregations can cope with hymns other than those they’ve encountered at school assmblies or the last night of the proms (not a lot). Recently, as a rather distant relative, I was invited to a funeral solely because it was known that I would know the hymns and sing loudly, to overcome the family embarassment at the fact tha nobody knew the hymns or could sing.

Any way, loads of fascinating detail here: the research website:

http://www2.hull.ac.uk/fass/socsci/research/research-projects/spirituality.aspx

A research report prepared by the prestigious group at King’s College London gives guidance (introduced by Desmond Tutu no less) on spiritual care for black and minority ethnic communities; it particularly focuses on sub-Saharan Africa (that means the countries south of the Sahara – basically the non-Arab parts of Africa) , but is widely applicable and adaptable for the UK situation.

There is a very useful chapter on spiritual care assessment.

Also nice is the recognition in several places that social workers have the skills to respond to spiritual care needs. Margaret Holloway’s fellow traveller model of thinking about spiritual care is highlighted (Margaret is Professor of Social Work at Hull University, and is a Department of Health lead on social work in end-of-life care). this is about practitioners travelling with patients and their families on their spiritual journey at the end of life.

This is (as adapted by the KCL team and shortened by me):

1. Joining (requiring spiritual awareness): Every team member should be …sufficiently spiritually aware to recognise the spirituality of the service user and to identify those people for whom spiritual concerns are important.

2. Listening (requiring spiritual sensitivity): …All team members should be able to ‘hear’ what the service user is saying and pick up the clues as to what they mean as well as what they are not saying (level 1)…[more skilled team members should be able to make] a preliminary assessment of the nature and significance of the spiritual issues is made through ‘active listening’.

3. Understanding (requiring spiritual empathy): …the staff member providing spiritual care needs to be able to understand and convey empathy with the kind of spiritual issues and dilemmas that may concern the service user, as well as the high points of spiritual experience, and understand how spiritual resources might be utilised…[the assumption is that you have to be pretty spiritually aware of your own journey to do this]

4. Interpreting (requiring spiritual exploration): …the traveller [patient] may enter a dark valley or rocky or hazardous terrain in which s/he is reliant on the knowledge, experience and expertise of the guide. The spiritual care provider will be willing to make her/ himself vulnerable through choosing to travel with the other person…This kind of depth work needs to be conducted with great care; often (but not always) a professional spiritual care provider will be the most appropriate person to engage with service users at this level.

One would like to see a similarly flexible approach to social work skills in palliative care, rather than the crude adherence to psychological care chracarteristic of NICE guidance.

The report on the web: http://www.kcl.ac.uk/content/1/c6/07/39/29/Spiritualcarerecommendations-Fullreport.pdf

To Hull to attend the final meeting of the research advisory group for the project on spirituality in contemporary funerals, final because it’s nearing its overall report after attending 46 funerals and talking to the participants about them. It seems that while, as most people know from personal experience, funerals nowadays are more about celebrating the person who has died than they used to be, this individualist celebration also reflects their spiritual conceptions; that is, their views about what is important in life. I’ll look forward to the final report, and you can get a copy by writing to the team at their website.

Research team website: http://www2.hull.ac.uk/fass/socsci/research/research-projects/spirituality.aspx

The British Humanist Association (BHA) newsletter is suggesting its members go to meetings to reclaim dying from the hands of the religious. This is what they say:

The BHA is a member of the ‘Dying Matters Coalition’ – set up by the National Council for Palliative Care. The Dying Matters Coalition is responsible for promoting public debate about death and dying and for assisting the implementation of the Department of Health’s End of Life Care strategy…[local and national meetings are being organised]

The BHA urges all BHA members, if invited or approached about these meetings, to attend them if they can to express humanist perspectives on death, dying and life and to reclaim death and dying from the monopoly of the religious.

As I’ve said before in this blog, humanists seem to think that they have some special philosophy to promote. although most people just find them anti-religious, sometimes rabidly so. I think having a personal and shared philosophy by which to live your life (and therefore also to live your dying) is a good thing for most people.

I’m not clear what a humanist view of dying might be; apparently any member of the BHA can enlighten us. But since humanism generally emphasises the human capacity to manage the world with the rational use of human knowledge and skills, we need to be clear what we can control and what we can’t. Since we all die, we can’t control that. What we can control is how we die, by thinking about and planning for the kind of care and support we might need from our sister and brother human beings in our dying process. Dying is a social thing that we do in relationships, and when we’re dying it’s often too late to build the relationships that will support us.

So building human relationships is a good way of preparing to live our dying., and we don;t build relationships by rejecting other humans’ beliefs quite so aggressively as some secularists seem to believe is appropriate.