The government is thinking of introducing a ‘duty of candour’ in the NHS. If it does, social care cannot be far behind: why would you have candour in health and not in social care?

The consultation  document is interesting because it makes clear that the professional advice is to be open, explain and apologise when things go wrong and the legal advice is that explaining and apologising does not admit liability. So, the jumpiness among managers about admitting anything is inappropriate.

As a beginning social worker in local government, I was always told never to say what was going to happen on the grounds that it very well might not, local government and regulations being what they are. I believe this attitude is the main source of the complaints that well-meaning commentators make about local government officials. As with bumping my car against someone else’s, you are always taught never to say anything. And what with the addition of the pressures of the past twenty years of businessification in public services to market your organisation and say how good it is at all times, it’s not surprising that candour is rarely to be seen.

But how can you enforce candour, when most professionals are trained to be elegantly non-committal and most employees not to drop the organisation in it?

Here’s what’s proposed:

There must be an appropriate investigation undertaken to establish the facts of the incident. This should be consistent with published guidance

Then there should be a communication with patients, carers and families with:

An apology – a sincere expression of sorrow or regret for the harm caused during the treatment or care. Saying sorry is not an admission of liability and is the right thing to do.

A step-by-step explanation of what happened, in plain English, based on the facts known at the time, as soon as is practicable after the incident is identified. By this, we mean as soon as practicable after the incident is reported to local risk management systems, and within 5 working days at most. If necessary any meetings with patients or their representatives can take place after the 5 working day period provided the offer of a meeting occurs within 5 days.

Both written and face-to-face explanations and apologies, unless the patients and their families/carers explicitly decline an offer of a meeting. This must be clearly recorded and open to audit.

Full written documentation of any meetings, according to the principles in the Being Open guidance, with these records filed separately from medical records and copies shared with the patient and their family/carer. These records will form the audit trail for use in cases of possible breach of the contractual openness requirement.

The consultation notes that since, under the proposed Health and Social Care Bill, clinicians will be involved in everything, they are likely to be tainted by or aware of incidents that should be apologised for. The document proposes that they should report failures to be open to the local clinical commissioning group.  There is also the problem that it is sometimes hard to find out when things have gone wrong.

The difficult I see with this is that, aside from the business and marketing pressures in a competitive system to seek to close down complaints or concerns, people are not good at openly admitting they were wrong, and it is not a good move to snitch on others, unless the failure is gross, when you have to continue to work with them.

Moreover I don’t think a big investigation followed by a formal letter and meetings is about being candid. That’s about standing up and saying that you got it wrong. The problem is that most of us also want to be able to say that we tried, that we did our best, that it seemed reasonable at the time. My wife never accepts that as an excuse for making a mess at home and I suspect that people would rather not hear all that when they say they want a simple apology and a statement that it’ll never happen again.

And that’s another thing, what with the pressures all services are under, it probably will happen again so that promise will not work either.

No, I think a duty of candour is unlikely to be a success, due to human nature rather than anything else. It’s another of those things that politicians should have thought twice about before promising.

Anyway, whenever was a government candid about something that went wrong? Who are they to tell us? And isn’t this whole business of apologising for the unfortunate acts and thoughts of a while ago getting a bit out of hand?

The consultation document: Department of Health (2011) Implementing a ‘Duty of Candour’; a new contractual requirement on providers: Proposals for consultation. London: DH. http://www.dh.gov.uk/dr_consum_dh/groups/dh_digitalassets/documents/digitalasset/dh_130443.pdf

Monitor is the independent regulator of Foundation Trusts that run the hospitals that are allowed to be financially independent the while operating within NHS. As part of the government’s marketing blitz to persuade us all that competition under the new Health and Social Care Bill is going to be good for us all, it has said how it’s going to exercise its new role of being the financial regulator for the new-style NHS. They’ve clearly been told by the government that: ‘you chaps had better get onside’.

Unlike many (you would expect this really from people who already work for an organisation that works for a system that wants to dump rational planning in favour of competition), it sees no competition between competition and cooperation. Here’s the argument:

An example of one area where our role on price setting would be particularly relevant is in avoiding ‘cherry picking’. There was much concern that the Health and Social Care Bill would enable private providers to ‘cherry pick’ routine and less complex healthcare services that are cheaper to provide and more profitable. The concern was that this would leave the NHS to deal with the higher-cost, more complex and long-term conditions with inadequate remuneration, causing the destabilisation of local hospitals. A change has been made in the Bill to address this concern. This means that Monitor would be given a specific duty to set prices that reflect all underlying costs, so there should no longer be any cherries to pick….(p 3)

The Bill sets out that Monitor would be required to support the delivery of integrated services for patients where this would improve quality of care or improve efficiency. More consistent, co-ordinated and comprehensive care is especially important for groups such as the elderly, who may need continuous care or have long-term conditions and need to be in contact with a range of health and social care professionals. It is also important for those using specialist services – for example, cardiac and cancer care, and for those with long-term conditions like diabetes or asthma. In any of these areas, care will currently often be delivered by multiple providers. This creates a real risk that the care will be fragmented and that one provider will not always know what another provider has done. The consequence is that a patient, at a time of considerable personal stress, will have to work out how and when to deal with different providers for different elements of their care. On top of the damaging impact on the patient, this can also lead to wasted time and money for the health service.

The new duty means that Monitor would have to consider how it can enable or facilitate integrated care. While it would be for commissioners, working with local providers, to develop and fund better and more integrated patterns of care, Monitor’s role as the sector regulator would be to work with others, particularly commissioners, to remove any barriers and consider how to enable integrated care provision where this is in the interests of patients. For example, there may be barriers to better patterns of care that Monitor could help address. We might, for example, look at ways we can ensure that standardised information is shared between provider organisations so that patients do not have to undergo the same tests on several occasions, or we could look with the NHS Commissioning Board at how to use the payments system to incentivise better integration.

Monitor has always been clear that we support better integration of health services where this is of benefit to patients. We believe that there are significant opportunities to promote the interests of patients through the integration of care and are fully supportive of any changes to the reforms that make this clear and help us to make this happen. It is our view that competition and co-operation are not mutually exclusive and that competition does not and should not have to come at the expense of beneficial co-operation. (pp 3-4)

What this says is, not that they are going to promote cooperation and integration of services, but they’re going to use payments in the competitive system so that it incentivises cooperation. This does not address the in-principle concern that many people have that competition never encourages integration.

It also uses the old liberal (not LibDem) market-forces chestnut that people can choose better if they have full information, for example about all the competing providers. This does not answer the point that they make themselves. At the point of choosing, a sick person has to go through all the business of finding out about and selecting services about which they have little knowledge and understanding. A little bit of standard information is not going to help here. My experience of families asked to go and find a care home for an older person in their family are shell-shocked, first by places that they instinctively think are costly but so-so in quality because they have not realised how expensive care is and how difficult it is to do well, especially when they’ve experienced a hospice that does do it well.

We’ve seen this week that apparently well-run banks like HSBC (well, they didn’t need bailing out the last time round) can let competition run away with them and fleece vulnerable consumers with unworkable ‘help’ in their old age. The care home sector will not be far behind, with the best will in the world, because it’s inherent in competition that people will try to make the best of their marketing rather than bring forward the genuine isues involved in very difficult personal decisions. Even the GPs doing good and being fair (see the last post) are going to splutter when people tell them they don’t want to be rationed thank you.

On the web: http://www.monitor-nhsft.gov.uk/sites/default/files/The%20Health%20and%20Social%20Care%20Bill%20-%20Monitor%E2%80%99s%20evolving%20role%20%5BInformation%20sheet%5D%2010%20October%202011.pdf.pdf

The government may not have got the Health and Social Care Bill through Parliament yet, but since GPs are slated as the people at the front-line of service rationing in the new regime, here is the GPs guide to rationing ethically. Apparently, you should aim to do as much good as you can, and if you can’t do good, be fair. And tell your patients when your decision is because you are rationing and not because it’s best for them. An interesting guide to the dilemmas of rationing, and since social workers also ration services, they could not do better than giving it a good read.

Oswald, M. and Cox, D. (2011) Making Difficult Choices: Ethical Commissioning Guidance to General Practitioners. London: Royal College of General Practitioners

On the web: http://www.rcgp.org.uk/pdf/RCGP%20ethical%20commissioning%20guidance%20v1.pdf

Another day, another document about end of life care quality standards. This one is the NICE guidance on quality standards for end-of-life care for adults: it is recognised as relevant to social care services. Its scope is set out as follows:

This quality standard covers all settings and services in which care is provided by health and social care staff to all adults approaching the end of life…

This quality standard provides health and social care workers, managers, service users and commissioners with a description of what high quality end of life care looks like, regardless of the underlying condition or setting…

Providing end of life care should be an integral part of every health and social care worker’s role. However for many, such care is likely to form only a small part of their workload. Many of these professionals are ‘generalists’ (GPs, community nurses and hospital medical and surgical staff, for example), recognising that some generalists will have a greater role in providing end of life care than others (such as care home workers).

NICE quality standards are for use by the NHS in England and do not have formal status in the social care sector. However, the NHS will not be able to provide a comprehensive service for all without working with social care communities. In this quality standard, care has been taken to make sure that any quality statements that refer to the social care sector are relevant and evidence-based. Social care commissioners and providers may therefore wish to use them, both to improve the quality of their services and support their colleagues in the NHS.

There is clearly an intention, then, that these standards should be used in social care, and this is notable since the Health and Social Care Bill will give NICE the job of giving guidance on social care. The aim that SCIE should be a NICE-equivalent in social care has clearly been lost; it has moved in another direction, and largely because it is premature to imagine you can give evidence-based guidance on social care; there just is not enough evidence. The problem though is whether a healthcare dominated body can twist its mind enough to give valid guidance on social care. This practice attempt suggests that the prospects are not good.

Limiting (non-social) definition of end-of-life care

Because it comes from a healthcare organisation, it takes a peculiarly non-social definition of end-of-life care: end-of-life care apparently is only what happens in what a healthcare professional determines to be the last twelve months of your life. We should really not just be accepting the General Medical Council definition of something that is mainly a matter of social experience.  We should be planning people’s last few years, not restricting that planning to when some healthcare professional has decided you’ve got a major illness. Aside from anything else, it reduces the pressure on people operating earlier on in the care process to help people to plan realistically for several years ahead.

This is the GMC definition used, and the comment on the implications of this:

People are ‘approaching the end of life’ when they are likely to die within the next 12 months. This includes people whose death is imminent (expected within a few hours or days) and those with:

advanced, progressive, incurable conditions

general frailty and coexisting conditions that mean they are expected to die within 12 months

existing conditions if they are at risk of dying from a sudden acute crisis in their condition

life-threatening acute conditions caused by sudden catastrophic events.

Given this, any palliative care within the last 12 months of life is regarded as end of life care. It is recognised that some people will benefit from palliative care before this time. Palliative care before the last 12 months of life is not included in this definition of end of life care and is therefore outside the scope of this quality standard (p. 7).

The inclusion as an element of this document of a quality standard for specialist palliative care, which is where people would be provided for according to this definition is inconsistent since the aim clearly is to extend beyond specialist palliative care.

It’s good that there’s recognition of specialist palliative care social workers (pp. 7-8).

Holistic care and assessment

In a way, there is nothing strikingly new in this guide: why would there be? It is a way of defining markers for standards that we already have. However, fully carried out, this is a mandate for much more effective and comprehensive care for families and carers particularly of people with end-of-life care needs. The section on holistic care for families for example:

Families and carers of people approaching the end of life are offered comprehensive holistic assessments in response to their changing needs and preferences, and holistic support appropriate to their current needs and preferences.

In a specialist palliative care service, this would be taken for granted, but in general practice and certainly in adult social care this is virtually non-existent. Care management assessments are supposed to be comprehensive, and person-centred assessments more so. However, they are mainly focused on organising services. A continuing process of holistic reassessment  integrating the needs of family and carers over two or three years of someone being in a care home is most unlikely. There might be some carer assessment on admission, but community adult social care staff are not going to have continuous engagement with the family of people receiving care services.  What else is required here:

a) Evidence of local arrangements to ensure that families and carers of people approaching the end of life receive comprehensive holistic assessments in response to their changing needs and preferences.

b) Evidence of local arrangements to ensure that families and carers of people approaching the end of life are offered holistic support appropriate to their own current needs and preferences.

Of course, because of their healthcare-oriented medical definition or end-of-life care, this is only people who are in the last year of life. So, GPs of people in care homes and in their own homes and possibly managers of care homes and other professionals visiting people in the community are supposed to apply their mind to whether they think their patients and clients are going to be at the end of life – another of the standards has them doing this in a timely way.   When they decide that they are, local arrangements swing into action for comprehensive holistic assessment and support for ‘current’ needs and preferences (current implies that they will look again periodically to make sure they’re still current). We’re a very long way from this in relation to end-of-life care (for example thinking about advance care planning of end-of-life care) for most older people in the community and many older people in care homes.

Here are another couple of holistic end-of-life quality markers:

People approaching the end of life have their physical and specific psychological needs safely, effectively and appropriately met at any time of day or night, including access to medicines and equipment.

People approaching the end of life are offered timely personalised support for their social, practical and emotional needs, which is appropriate to their preferences, and maximises independence and social participation for as long as possible.

Physical yes, if a good GP is regularly involved. Although many patients won’t tell them about pain and they might not get a real handle on the long-term mixture of minor problematic conditions in most older people’s lives. The way in which most care homes have to rethink the total package of medications that someone comes in with is evidence of that. But psychological assessment and support, and personalised support for social practice and emotional needs (i.e. not a few bingo sessions in the lounge for everyone and always–on telly) and independence and social participation are not on the agenda in many care homes or community services for older people. Simply coping with the care needs is too much for the serial carers for four bouts of 15 minutes a day that is the lot of most older people in the community. But many of them will be approaching the end of life (although some not by the medical definition used by these standards), so they should be getting this standard of care.

Bereavement care

Looking at the quality standard for bereavement care, the structure of services should include:

a) Evidence of a local needs assessment for bereavement services, detailing specialist support needs for all sections of the community including vulnerable groups such as children and those with learning difficulties.

b) Evidence that a local service specification for bereavement services has been developed in partnership with acute, community, voluntary and private sector providers and local authorities, which includes the provision of specialist support for groups identified in the needs assessment.

As regular readers will know, I have my doubts about bereavement needs assessment, because services for the patient may not have had much contact with a patient’s family prior to death, and they certainly won’t have had contact with all the people who have been affected by a bereavement. And what are they supposed to do? Observe relatives covertly (without informed consent – remember bereaved families have not agreed to be bereavement patients of the health and social care services just because they are related to someone who is dying).  And do this alongside everything else they have to do, to see if they can identify any adverse bereavement reactions? Anyway, these will very likely set in later, so observations at the time of death are unlikely to be helpful. No, what we have to do is increase the level of awareness that people might have bereavement problems, make sure they know where to go if difficulties arise and that all services are alert to think about bereavement when they are presented with someone in middle life with emotional and psychological problems. I don’t think enough people in everyday social care (and I have my doubts about healthcare too but know less about it) are conscious that loss and bereavement issues might be affecting the people that they are dealing with.

And there might be some sort of bereavement service available, but will there really be specialist help available for particular groups who really need it: vulnerable groups such as children and those with learning difficulties. Later there is also mention of the following:

People closely affected by a death may include care home residents, staff and volunteers, staff from a variety of health and social care organisations, as well as family members and carers, including children. Children may need particular tailored support.

Families and carers of people who have died suddenly or in an unexpected way, as well as those who were expecting the death, should have access to information and support appropriate to their circumstances.

The standard required is:

…bereaved people [should be] offered support at the time of death that is culturally and spiritually appropriate, immediate, and available shortly afterwards.

Bereavement support may be not be limited to immediately after death, but may be required on a longer-term basis and, in some cases, may begin before death…

And the ‘stepped approach to emotional and bereavement support’ on top of good information will include: general emotional and bereavement support, such as supportive conversations with generalist health and social care workers or support from the voluntary, community and faith sectors.

Health and social care workers [should] communicate sensitively with people closely affected by a death and offer them immediate and ongoing bereavement, emotional and spiritual support appropriate to their needs and preferences.

This is just not going to happen on a general basis; I’m not saying they would be unsympathetic if bereavement issues are mentioned to them, but most health and social care staff are not involved with relatives of people who have died – the case is closed, the care home room is occupied by someone else. And nobody is going to go looking for this kind of work in general health and social care.

Inequalities

One of the striking things, at the beginning, is the approach to inequalities, and the very long listing of factors that you should not be using to disadvantage people:

• gender
• ethnicity
• disability
• cognitive impairment
• age
• sexual orientation
• gender reassignment
• religion and belief
• culture or lifestyle
• marriage and civil partnership
• pregnancy and maternity
• socio-economic status
• mental capacity
• diagnosis
• choices they make about their care
• location and setting in which they are receiving care.

This last is particularly important: there is a bit of a tendency in health and social care to say: ‘if you don’t accept our plans for where you are going to be cared for, we don’t accept any responsibility for bothering with you.’

ELCQuA quality standards: no evidence of the social

Also striking is the number of overall headings that the current ELCQuA quality standards do not produce evidence about:

2. People approaching the end of life and their families and carers are communicated with, and offered information, in an accessible and sensitive way in response to their needs and preferences.

5. People approaching the end of life are offered timely personalised support for their social, practical and emotional needs, which is appropriate to their preferences, and maximises independence and social participation for as long as possible.

6. People approaching the end of life are offered spiritual and religious support appropriate to their needs and preferences.

7. Families and carers of people approaching the end of life are offered comprehensive holistic assessments in response to their changing needs and preferences, and holistic support appropriate to their current needs and preferences.

15. Health and social care workers have the knowledge, skills and attitudes necessary to be competent to provide high-quality care and support for people approaching the end of life and their families and carers.

You will notice that it’s precisely all those areas where palliative care based in healthcare takes no notice of social needs and social care. Palliative care needs to change a lot if it is to recognise the reality that the quality of service to their very sick patients has not been transferred to the normal population of people approaching the end of life.

So whereas people in specialist palliative care will think this guidance is unexceptional, and so it is, there’s a long way to go before end-of-life care planning is going to be a general attribute of health and social care in the UK to the quality that these markers are seeking.

References

The NICE quality markers for end-of-life care are on the web at: http://www.nice.org.uk/media/EE7/57/EoLCFinalQS.pdf

It alos contains links to a lot of other useful dopcuments, so it is a good way into information about end-of-life care.

A related document is the quality markers that PCTs are supposed to use to assess end-of-life care (again by the medical definition) in healthcare services. This is different from the wider application of the NICE quality markers, which also applies to places like social care-commissioned care homes. It is also theoretically not so evidence-based as the NICE markers, although frankly a lot of it all seems to me to be based on opinion.

Department of Health (2009) End of Life Care Strategy: Quality Markers and Measures for End of Life Care. London: Department of Health. http://www.dh.gov.uk/dr_consum_dh/groups/dh_digitalassets/documents/digitalasset/dh_101684.pdf

If you just want the main points of the NICE quality markers, the overall headings are here: http://www.nice.org.uk/guidance/qualitystandards/endoflifecare/home.jsp?domedia=1&mid=E9C7F836-19B9-E0B5-D4B49B5A7149F081

Further critique from the social care perspective is contained in the comments from the social care stakeholders. You can find this at: http://www.nice.org.uk/media/10D/2B/SocialCareWorkshopNotesJuly2011.pdf

This document points out that the draft was totally blind about all the standards that care homes and social care agencies have to work to (and the final document still is), and failed to look at safeguarding issues and the needs of children and young people (and the final document still doesn’t).

SCIE (the Social Care Institute for Excellence) is (at last; thank goodness) getting into end of lfe care on behalf of social workers. They have a new Hub page, with links to end of life issues of interest to social workers. It’s particularly useful for social care providers including care homes.

SCIE end of life care hub: http://www.scie.org.uk/adults/endoflifecare/index.asp

Anyway at SCAG (see the previous post), Jean Tottie introduced me to the Life Story Network.

The website is here: http://www.lifestorynetwork.org.uk/lifestory/

Videos from (mainly) older people here: http://www.lifestorynetwork.org.uk/innovation-and-practice/

This is about getting people to document their life story through writing, photos, computer files memory boxes, audio tapes and making DVDs. St Christopher’s does a lot of this, and it is important also to distinguish it from reminiscence and life review, which may have more therapeutic purposes. You can work with an individual or family or part of a family. In palliative care, it might be about memorialising someone you has died or is dying, or their relationships with you, or expressing something important about their lives.

Life Story Network is mainly about providing training, but their website has several interesting and creative videos from older people.

The Dementia UK also has webpages on Uniting Carers, http://www.dementiauk.org/what-we-do/uniting-carers/ which has several carers’ stories in the same vein, one of them Jean’s experience of caring for her father (there are long and short versions, and I’m afraid both are not well-formatted on the site, but they are very instructive about what older people and their carers have to go through).

Long version of Jean’s story: http://www.dementiauk.org/assets/files/what_we_do/uniting_carers/carersjourney.pdf

Short version: http://www.dementiauk.org/what-we-do/uniting-carers/carers-experiences/jean-tottie-s-story/

Other carers’ experiences: http://www.dementiauk.org/what-we-do/uniting-carers/carers-experiences/

Although she is an experienced health and social care professional, she found it difficult to get knowledgeable and consistent help from health and social care services. The services really were not set up to deal adequately with someone with dementia, and had failed to think through dealing adequately with carers. Here is her account (after pressing the need for ages) of his first visit to the memory clinic:

The first visit to the Memory Clinic was an interesting experience. Dad and I were seen by someone I assumed to be a nurse but later discovered otherwise. No introductions (other than first name) were made or explanation of how the clinic operated. The MMSE was done and I helped complete the picture with corrections on daily living activities. I would have welcomed a separate meeting as a carer as I felt that always being together meant that the conversations turned to me to confirm or correct Dad’s answers until he was excluded from the conversation. We were given no feedback on the MMSE and went straight in to see the doctor who hadn’t seen the result. The Doctor said that Dad probably had vascular dementia, but wanted to be sure with a brain scan, and prescribed galantamine. I was told I could ring the CMHT for advice if needed – but I didn’t know who or where they were! The only time I did ring I wanted to speak to a clinician because Dad was unwell but the CPN was on leave and there were no other clinical staff available in the team so I rang the hospital doctor for advice. After this clinic I asked Dad what he thought but he said he hadn’t heard much of it and did not know what had been going on.

A good communication lesson here: make sure your patient/client can hear you before you start.

At the Social Care Advisory Group meeting yesterday of the National End-of-Life Care Programme. They call it SCAG – the more naive among you may not know that this is a drug user’s term for their drugs, but I find from Urban Dictionary http://www.urbandictionary.com/define.php?term=scag that some people use it to mean: ‘Someone who never has anything they need, and has to constantly borrow from other people although they have no intentions of returning said item’. I think this is a word I am going to keep in mind: I didn’t know there was a term for this common behavioural syndrome, and even less did I know that it’s a cool term.

Perhaps they should change the name to ‘Social Work Advisory Group’, so it could be ‘SWAG’.But this may not help: my memory of the meaning of swag was the results of a theft – as the Oxford dictionary has it: money or goods taken by a thief or burglar. Even this is only informal and the main meaning is an ornamental festoon or garland of flowers, fruit or greenery or a carving or fabric imitation of such a thing. Of course, I now remember this from the guide’s descriptions in many visits to stately homes. And I am reminded of Waltzing Matilda: ‘once a jolly swagman etc etc.’; swag is Australian for one’s bundle of possessions and a swagman is someone who travels with such a bundle, even perhaps someone who has nothing else but such a bundle.

But Urban dictionary puts me right on current terminology: swag is what you get in a goodie bag at a party, or promotional freebies given out by commercial organisations. This leads to the main streeetwise meaning. To quote: appearance, style, or the way he or she presents them selves, as in: He got a killa swag. You’ll have gathered that although Urban dictionary keeps you up to date, it does not represent grammatical English (indeed, I should mention that I have corrected the spelling and punctuation in quotations from UD, in case anyone there is offended).

So perhaps Social Work Advisory Group is no better.

Back from an interesting conference last Friday run by the University of East Anglia and the journal Ethics and Social Welfare on Confidentiality and Collaboration. Some very thoughtful contributions from experienced people mainly from safeguarding. Of course, the worry in that field of practice is that people’s professional rules about confidentiality prevents them sharing concerns about children and vulnerable adults at risk of abuse and neglect. But the law and all professional codes of ethics and practice require disclosure of concerns to colleagues to prevent offences and risk to others. This is really not difficult. Is someone at risk? Then disclose your concerns; at least at the outset we are only talking about conversations with professional colleagues who have the same objectives of public safety and concern for the people we are trying to help.

However, my view of this emphasises the importance of ‘informed consent’ as the answer to many confidentiality problems. One contributor was right in saying that I think informed consent should be threaded through our practice; I thought this was a nice concept. After all, it is contained in most social work codes of ethics, but I don’t think it is emphasised enough in practice. See my Humanistic Social Work: Core Principles in Practice, (Palgrave Macmillan, UK; Lyceum, USA). Chapter 2 promotes informed consent as an important way of offering accountability to service users and professional colleagues as well as to agencies.

For Humanistic Social Work in the UK and Europe: http://www.palgrave.com/products/title.aspx?pid=497063

For Humanistic Social Work in the US: http://lyceumbooks.com/HumanisticSocialWork.htm

(You get some free chapter downloads from the US site).

You might find this interesting: it’s a case study of Madge, using a person-centred style of documentation about someone engaged in end-of-life care. My comment on it would be thatsome people might find this a useful format for asking questions that focus on what a person wants in their dying phase (and is a format for advance care planning, which usefully does not have too much of a focus on advance decisions, a failing of some of the palliative care based advance care planning processes). Helpful for family members (although I wonder if some family members who are less open might find it too personally critical, and therefore whether everyone would want to say some of the things that she does about what she wants and how she does/does not want to be treated).

Professionals might need to be more challenging than Madge wants them to be – that’s sometimes their job. but sometimes it isn’t. The extent to which the job is to challenge people’s preferences, particularly in end-of-life care, deserves some careful thought. Coming to the end of life is a new personal experience for everyone, but which many professionals have good knowledge and eexperience from the outside. The current orthodoxy that people should particpate and direct the serviecs that they receive runs the risk of becoming a tyranny that stops professionals from exercising critical judgement based on their professional knowledge and experience but which may challenge services uers’ beliefs. If a professional never challenges, what is the point of their professional role?

The case study: http://www.helensandersonassociates.co.uk/media/60834/madges%20story.pdf

Information leaflets in a hospice service

Information leaflets are a bit taken for granted. You often see them on the walls of service-providing organisations and some hospitals and public agencies have information services. How do they get there? How are they selected? How are they replenished? My experience, over years of creating them and maintaining noticeboards and other ways of providing public information, is that what appears and how it is updated is often pretty random; there will always be useful things that aren’t there and un-useful things that are. Also, the leaflets will be updated or not or not yet. It’s often a matter of personal interest by members of staff.

Macmillan Cancer Support has made a speciality of information in recent years, and merged in 2008 with Cancerbacup, which used to provide printed and later on internet information on cancer. They have a good website, which is so useful you wonder why organisations need to provide their own information. You can find it at: http://www.macmillan.org.uk/Cancerinformation/Cancerinformation.aspx

Of course, Macmillan is only about cancer, and palliative care is like all those heavily advertised shops – it’s ‘so much more’. Some other sources of information are:

The Dying matters website, which tries to raise public awareness of the fact that we all die and are all bereaved and to improve competence in dealing with this human reality in our everyday lives: http://www.dyingmatters.org/. This contains most of the information for the public that used to be on the NCPC website.

The Help the Hospices Hospice Information website: http://www.helpthehospices.org.uk/about-hospice-care/. Aside from having a reasonable account of what palliative care and hospices are, it also has good resources for carers (originally derived, it has to be said, from work withSt Christopher’s).

A mini-survey – what is there at St Christopher’s

So with all this information available, why are information leaflets still provided by health and social care agencies, and in particular hospices. The answer: partly because they have to tell people about how to engage with their own services, and partly because the need to interpret general information in accordance with the style of the organisation and the views of the clinical staff providing the service.

I looked at the St Christopher’s leaflets and did a bit of an analysis to check this out.

The first point is that that they tell you who they’re for, some are for patients, some for patients and carers (one providing information for carers is for carers and patients) and some for patients and visitors.  Some do not say this, the leaflet about the founder, Dame Cicely Sounders, for example. One is for ‘healthcare professionals’ and contains general information about the services provided. Not, I notice, social care professionals – is palliative care now only healthcare? I think not, and expatiate on this later in this post. End-of-life care developments tell us that people without healthcare problems still need to think about and plan for the end of their life and the National End-of-life Care Programme Social Care Framework says that social care professionals should be more aware of involved.

Then there are the categories of leaflet. I divide these into seven categories.

The first is about the hospice and its history (like the Cicely Saunders one), and fund-raising, and I don’t list them. However, while these are not directly providing information as part of the services to patients and their families, they provide a general context and a ‘feel’ for the place, which may be important to patients and family members in getting a picture of the principles of what the hospice is about.

Category 2: leaflets that provide general information about the services provided:

-          Coming to St Christopher’s as an in-patient

-          St Christopher’s Home Care Service (and people who are admitted to the hospice and to the home care services get an extensive information booklet about all sorts of things, which include the text of many of the other information leaflets)

-          The Anniversary Centre – a sort of grand Starbucks social centre (but better cakes) with access to all the Hospice’s services

-          Information for carers

-          Community support volunteers (the volunteers befrienders)

-          Complementary therapies.

This category of leaflet is about informing people what they can expect from and what they need to do to benefit from the services. It’s very much about engaging with the particular service.

Category three: leaflets about medical matters:

-          Additional information on medicine used in symptom control

-          Frequently asked questions about morphine

-          FAQs about blood transfusions

-          FAQs about cardio-pulmonary resuscitation

-          Fluids and the use of artificial hydration.

these leaflets are about being clear how the medical staff interpret various controversial issues in palliatrive care in this particular hospice. The last one moves into category 4: understanding what’s happening to you. It explains why this palliative care service, like many, reduces the tubes runnning into a patinet once they are clearly within the last phase of dying. Many members of the public think this is like starving people to death, so it’s important to explain it.

-          Coping with dying (this covers what happens as someone moves towards death)

-          Why won’t they eat?

-          Difficulty sleeping.

These are mainly about things that many members of the public woryy about, and move again into category 5, which the professionals call ‘infection control’, but I call them ‘managing some of the medical nasties’ that you mighthave heard of:

-          Healthcare associated infection – how you can help reduce it

-          Methicillin resistant staphylococcus aureus (MRSA)

-          Clostridium difficile (C. Diff)

-          Barrier nursing.

Then there’s Category 6, ‘official stuff’:

-          How to complain or comment about our services

-          Transport and St Christopher’s Anniversary centre

-          Cornea and tissue donation.

So are there any social care related ones? Category 7 is my any other (but mainly social care related) leaflets:

-          Advance care planning – this tells you about it, and points to the ACP booklet, which provides a format for writing an advance care plan.

-          Consent – what you have a right to expect; this is mainly about consent to treatment and refusing treatment, but also covers things like seeing students and taking part in research

-          Choosing and moving to a care home

-          Cognitive Behavioural Therapy

Taking this as a little research project, one thing I found interesting is that I got this pile of leaflets from the main stock of leaflets and the (slightly different) selection from where the home care teams operate from. I know that there are leaflets about coping with bereavement and the hospice’s bereavement services, but these are not in the main stock. Presumably they are made available at the time they are required from a stock kept somewhere else.

Social work in hospice information

What about social work in this panoply of information? I was struck by the way in which this material is very health-related. Even though the social work, welfare and bereavement service is extensive and a major slice of the hospice, there is no leaflet about it. There is also no leaflet about the spiritual care services. However, these are covered in the very extensive information for patients and carers. There’s a little bit about social workers and welfare officers (who provide a welfare rights service) and stuff about the spiritual care and bereavement services in the information for carers leaflet and rather less in the home care service leaflet. There is often a mention of social workers as part of the service in other leaflets.

One of the reasons for this is the healthcare related priority. The history of palliative care derives from trying to improve medical care at the end of life and integrate pain and symptom control together with excellent nursing care for very sick people as part of a wider conception of the end-of-life being concerned with emotional, psychological, social and spiritual issues in peoples’ lives. It is still very much a health care service and a specialised provision. But it could have been and perhaps should be a much more community-oriented service. Probably this is partly a historical thing: Britain is unusual in having so many hospices based in buildings; the US has a much higher proportion of community provision. There will be a long-term shift towards greater non-health community care for the end of life, as the doctors have got so good at curing serious illnesses, turning many cancers into long-term conditions, and, alongside other healthcare professionals, so much better at managing long-term conditions. Eventually this will probably mean that end-of-life care will become largely non-medical, with the medical and nursing care inserted into broader long-term conditions rehabilitation and treatment.

Another reason is that healthcare information is so concrete, whereas it is quite hard to write a sensible information leaflet about psychological, spiritual and social care matters. But the ‘choosing and moving to a care home’ and the ‘cognitive behavioural therapy’ leaflets suggest that this is possible. In social care we ought to be working harder at providing concrete public information for people using our services. It should be possible to explain more concretely what social workers do and why, in the way these medical leaflets do. This would make social work a more important aspect of the services that it is part of. We could also make clearer what some of the issues are about the problems that soical workers help with; in this case, for example, why children need help in understanding the fact that an important relative is dying.

One of the reasons for going into the information leaflet business is the stigma against social care. Its history has been very much a dealing with the mad, bad and ‘dependent scroungers/exploiters of our welfare system’ service. But the increasing focus on long-term conditions affecting the huge population of older people gives an opportunity for a reinventing of social care, much as palliative care reinvented care for ‘the dying’ over the past fifty years. We are often providing valued services for the majority in the frailer periods of their lives. And providing clear, specific, and brief information could make the general public think again about how they actually value social care.

Information and CancerBacup

If you’re interested in history, there is a brief history of CancerBacup, the cancer information service at http://www.macmillan.org.uk/Documents/AboutUs/WhoWeAre/History/part4Timeline.pdf; also information about the founder Dr Vicky  Clement-Jones, a research doctor who had ovarian cancer, at: http://www.macmillan.org.uk/Documents/AboutUs/WhoWeAre/History/part3VCJBiography.pdf. This originally stood for the British Association of Cancer United Patients, but also handily implies supportive ‘backup’. It always reminds me of the lovely Lancashire town of Bacup (pronounced ‘bay-cup’).