Social work and end-of-life care

Social work is important in end-of-life care

Archive for the ‘family’ Category

Information governance report covers social care, deceased people

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20140227 Infogov reviewStimulated by all the discussion about whether we should agree to GPs sending our medical records to a central source to be sold to insurance companies and the like, I’ve been looking at last year’s Information Governance Review.

Link to Information Governance Review Report

This is a follow-up to the Caldicott Review of 1997, which you can get on the Internet from the Government Archives; they are now archiving important web documents…

Link to the Caldicott Review (1997)

This is one of those amazing government documents that led to something happening, and for some years, I was a Caldicott Guardian, charged with representing patients team in the management of the hospice I worked for as part of ensuring the confidentiality of their records.

Link to the Caldicott Guardians website.

The Review Report from last year went back to the whole process, and particularly in the light of the massive expansion in communication arising from the ubiquity of the internet. Also amazingly, Dame Fiona Caldicott was still around to chair it, and still had enough credibility to do so.

One new feature is that health and social care are covered, since although the term ‘social care’ was just coming into use back then. It is now more commonplace. But not really in anything to do with the Department of (very much only) Health. In the new report it is all ‘elfnsoshall’ with the basic assumption that you don’t need to think very much about what social work is all about – just talk about the NHS and everything is the same. Very few people involved directly with social care were on Dame Fiona’s committee.

There is a section on children and family records, and this covers some of the complexities of social care records in this field, but it still references the Royal College of General Practitioners and the BMA rather than agencies with social care expertise. It notes issues about children’s social care records: many children’s social care departments have family records, alongside individual children’s records, and this has always been complicated, although is better in some ways since computers permitted multiple postings to different records, if an entry covered several children or family members in one go.

However, the report also notes that the Health and Social Care Information Centre (of current GP records fame that has covered itself with pooh over its schemes for GP information) does not have the statutory right to collect children and families social care data. I’m comforted by this, in view of the government’s wish to sell as much health data as possible to private sector organisations for as much money as possible, which has only been stymied for a brief period of grace before it goes ahead again, due to widespread anxiety about confidentiality. We can do without this organisation getting its commercialised mitts on social care data as well.

There is also a brief section on deceased people, since NHS records are clearly available to appropriate people after death, while this is not possible in social care. The proposal is to think about people being able to give custody of the health and social care data in their Will: this would resolve some of the problems health care agencies have in giving access. Although perhaps not. When I worked in a hospice, fighting over the records was often a follow-on to fighting among family members about the estate, sometimes as a proxy for their role in the family

5.7 The deceased

There is a lack of consistency in the approach to the data of deceased people within the health and social care system. The common law duty of confidence is generally regarded as extending to the deceased but the Data Protection Act only relates to the living. Legal representatives or those with a claim on the estate of a deceased person are able to access the health records of the deceased person through the Access to Health Records Act 1990, but there is no equivalent legal route for access to social care records. Some ‘work-arounds’are used but these are increasingly untenable (p 58).

As people gain more control of their information, it should be possible for a person to give custodianship of their personal confidential data after their death to someone, or to a research data bank, so that future generations can use it to learn and improve the health and wellbeing of society.

The review panel concluded that the Law Commission, in their review of the legal aspects of data sharing should consider looking at how the law surrounding deceased persons might be better harmonised. In particular, the Panel would like the Law Commission to consider ensuring there are no legal impediments to giving custodianship of their health and social care data within their last will and testament (p59).

But it does contain a useful pile of information about information – well worth taking a look at and following up.

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Written by Malcolm Payne

10 March 2014 at 11:28 am

Think through and spell out your social work reasoning for ‘draconian’ decisions

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20140128 Adoption caseSome points in an adoption case made by the President of the Family Division of the Court of Appeal, Sir James Munby, can inform social workers about what it means to make holistic decisions, even if he’s talking about the law. He’s talking about child care services and adoption, but in the quotations that follow, I have taken out most of the references to that, so that you can see that his points have general application to all sorts of decisions by social workers (and other professionals).

Link to a legal commentary, which contains a link to the judgement

I’ve picked up this point from the legal commentary, and then expanded on it here.

He’s saying that once you have dismissed all but one option for good reason, you still have to look at that option to see if there are good reasons for rejecting that option too. If so, it may mean that you have to reinstate a less than desirable option you rejected earlier, because it’s not so undesirable as what you are thinking you should impose on a client. And, in particular, you must not accept the rejection of an option because it’s inconvenient or expensive for the service, or difficult for the social worker; otherwise people can take judicial review and judges will (or, Sir James is saying, should) be asking you some cogent questions about your reasoning.

If it’s too difficult for the social worker, get yourself a new social worker. Good practice ethics requires us (including our supervisors and managers) to think ‘am I good enough to do this or should I get someone who’s better than me?’ All social workers are not interchangeable.

We can all think of situations in which this happens: it’s not practical to make sure that someone is OK at home, so we end up by thinking she should be kept in hospital or care home, because she won’t be safe all the time on her own. But we forget, in making that choice, that the option we’ve ended up with may be safe, but it may not offer her the freedom or flexibility in her life that anyone would prefer. But because we ruled out all the other options, we don’t look at the downside of loss of freedom against the downsides of the other options.

Here’s how Sir James puts it:

2   …the appeal not merely requires us to determine an important question of law…; it also raises some very significant matters of more wide-reaching importance.

28   …the court’s assessment …must take into account the assistance and support which the authorities would offer. So “before making an…order … the court must be satisfied that there is no practical way of the authorities (or others) providing the requisite assistance and support.” …The local authorities must deliver the services that are needed and must secure that other agencies, including the health service, also play their part, and the parents must co-operate fully.” That was said in the context of supervision orders but the point is of wider application.

29.   It is the obligation of the local authority to make the order which the court has determined is proportionate work. The local authority cannot press for a more drastic form of order, …because it is unable or unwilling to support a less interventionist form of order. Judges must be alert to the point and must be rigorous in exploring and probing local authority thinking in cases where there is any reason to suspect that resource issues may be affecting the local authority’s thinking.

32. It is time to draw the threads together and to spell out what good practice, the 2002 Act and the [Human Rights] Convention all demand.

33.   Two things are essential – we use that word deliberately and advisedly – both when the court is being asked to approve a care plan …and when it is being asked to make a non-consensual placement order…

34.   First, there must be proper evidence… The evidence must address all the options which are realistically possible and must contain an analysis of the arguments for and against each option.

41.   The second thing that is essential, and again we emphasise that word, is an adequately reasoned judgment by the judge.

43.   In relation to the nature of the judicial task we draw attention to what McFarlane LJ said in Re G (A Child) [2013] EWCA Civ 965, paras 49-50:

“In most child care cases a choice will fall to be made between two or more options. The judicial exercise should not be a linear process whereby each option, other than the most draconian, is looked at in isolation and then rejected because of internal deficits that may be identified, with the result that, at the end of the line, the only option left standing is the most draconian and that is therefore chosen without any particular consideration of whether there are internal deficits within that option.

“The linear approach … is not apt where the judicial task is to undertake a global, holistic evaluation of each of the options available for the child’s future upbringing before deciding which of those options best meets the duty to afford paramount consideration to the child’s welfare.”

…44.   We emphasise the words “global, holistic evaluation”. This point is crucial. The judicial task is to evaluate all the options, undertaking a global, holistic and (see Re G para 51) multi-faceted evaluation of the child’s welfare which takes into account all the negatives and the positives, all the pros and cons, of each option. To quote McFarlane LJ again (para 54):

“What is required is a balancing exercise in which each option is evaluated to the degree of detail necessary to analyse and weigh its own internal positives and negatives and each option is then compared, side by side, against the competing option or options.”

45. McFarlane LJ added this important observation (para 53) which we respectfully endorse:

“a process which acknowledges that long-term public care, and in particular adoption contrary to the will of a parent, is ‘the most draconian option’, yet does not engage with the very detail of that option which renders it ‘draconian’ cannot be a full or effective process of evaluation.

So, in making decisions and writing reports and records of the decision, it’s important to think through and spell out all the arguments for and against options, particularly if they involve imposing solutions on an unwilling client or family. Because what the judges are saying in relation to child care can equally well be said about adult care cases as well.

Written by Malcolm Payne

28 January 2014 at 3:08 pm

Good nursing and care for relatives in the NHS

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Malvern Community Hospital sideAnd good care for dying people is not only available in big urban hospitals. Our uncle Don (aged 95) was recently cared for at the new Malvern Community Hospital in the last weeks of his life. It has 18 GP beds and a minor injuries unit. With her extensive experience of palliative care, Margaret says with appreciation that the nursing for patients and support for relatives was a good as any hospice.

Link to Malvern Community Hospital website

Written by Malcolm Payne

15 January 2014 at 12:15 pm

Good care for dying people in NHS hospitals is still possible

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140113 Death in hospA thoughtful article in the Guardian by Julie Myerson, who suggests that often in the NHS you can get wonderful care for dying people, even in the biggest urban hospitals and busy wards. It is a story of effective nursing and good communication with relatives in a busy London hospital. And, incidentally, the hospital that Cicely Saunders started out from in her experience as a social worker which eventually led to her contribution to the origins of the hospice movement. Good to see that the medical and nursing skills involved still exist.

Written by Malcolm Payne

14 January 2014 at 12:06 pm

Child visitors in adult care facilities- think it through

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130620 Jimmy S advice

Should celebrities be treated any differently to volunteer fundraisers who don’t have celebrity status? Why? What privileges (if any) should they be granted? Why?

This is a quotation from advice issued by a London firm of lawyers, which has several pages of questions that organisations ought to think about to make sure their policy and practices robust if they might have a Jimmy Savile in their midst. There is a review of NHS policy going on, conducted by a barrister, Kate Lampard – NHS staff can make comment to her on safeguarding, governance, celebrities and complaints and whistle-blowing: link below.

But since many voluntary organisations and many other caring bodies have celebrity involvement from time to time, their managements should be thinking about how they should handle problems that might arise. And that has implications for general safeguarding, volunteering and staff arrangements.

All hospices and care homes have children around from time to time, but they are mainly geared up for adults, and may not have thought too clearly about their responsibilities for safeguarding children who are visiting relatives.  Adults who are responsible for the children might well be stressed and coping with all sorts of pressures at the time. It’s all too easy to assume that other visitors to the hospice are good-willed, and leave your child in the waiting room or visitors lounge. But what if a visitor to a hospice mentioned to a member of staff that they thought it was wrong that another visitor was taking someone’s child off into the garden on their own? Would it be clear what the visitor should do to raise concerns? Would the staff member know what to do? If the staff member were a volunteer in the tea bar, would they know what to do?

Any management of any care facility needs to have thought it through and have appropriate processes and training in place.

Link to the Mills and Reeve legal advice document

Link to Kate Lampard, to make comment (you have to reply be the end of June): lampardcomments@dh.gsi.gov.uk

Written by Malcolm Payne

20 June 2013 at 12:56 pm

Memorials among the fishes

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130617 Eternal reefsThis is another (American) way of creating a memorial for someone who has died: you have an environmentally-friendly concrete doodad sunk in the sea with your ashes and a plaque, which fishes and coral can inhabit and grow on. The website, under ‘family resources’ also has sensible brief words of guidance for families going through a dying process.

Link to ‘Eternal Reefs’ website.

Written by Malcolm Payne

18 June 2013 at 12:02 pm

Empathy: The Human Connection to Patient Care – YouTube

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Empathy: The Human Connection to Patient Care – YouTube.

This is quite a nice short film, which doesn’t tell you much about empathy, but does emphasise how everyone (including staff) for at home, in hospital or hospice or out and about has wider life concerns as well as their reason fr being involved in caring – and the concerns are not necessarily immediate or directly connected to their role – the young doctor who is seven years free from cancer, for example. Watch the young woman and her mother (?) hugging as they’ve just signed a do not resuscitate decision.

130617 Empathy

Written by Malcolm Payne

17 June 2013 at 1:41 pm