Social work and end-of-life care

Social work is important in end-of-life care

Archive for the ‘advance care planning’ Category

Try making a self-care plan for yourself or service users and carers

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Social-Work-Tech-Self-Care-PlanSocial Work Tech’s Ignacio Pacheco produces a nice format for making a self-care plan – for thinking about how you can look after yourself against the stresses of life. You can do it yourself or give it to service users and their carers. It’s usefully simple and clear, and you can use it on paper or on a flipchart of chalkboard. The website (Social Work Tech) has a short video explaining it and other information. You can download the document in various formats.

Link to Social Work Tech website.

Written by Malcolm Payne

25 June 2013 at 10:34 am

Helping people with artificial limbs – useful update

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130617 ProstheticsAn interesting legal article, which looks at prosthetics, artificial limbs to you and me.Although this is basically for lawyers wanting to consider how to make appropriate claims on their clients’ behalves, social workers dealing with disabled people will also find it useful because it tells you about some of the problems that people with prosthetics might need help with. A useful bit of updating.

Apparently these are now so sophisticated that many people cannot get full use out of them, and whether they can use the most up-to-date possibilities is affected by other aspects of their medical condition. While people often claim for the most up-to-date technology, they are may well be better off with older stuff.

Link to article

Written by Malcolm Payne

19 June 2013 at 12:19 pm

Document your wishes if you don’t want medical heroics at the end of your life – teaching resources

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130313 CPR articleAn American article on making sure you have documented your wishes if you want to die peacefully and don’t want the medics to try to save you with undue heroics. Refers to American law, but the situation is universal, and there are links to audio and video case examples, which you might find useful if you teach in this field.

Link to: Bakersfield CPR drama could have been prevented by common document – San Jose Mercury News.

Written by Malcolm Payne

14 March 2013 at 11:22 am

Advance care planning: basic explanation and British links

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Care planning montageAs promised, some more general material and British links on advance care planning.

Advance care planning (acp) is the general term for helping people to plan for the care they want during the end-of-life phase of their condition. It builds on the idea of advance directives, which tell doctors what their patient wants them not to do, if the patient does not want to be enthusiastically kept alive; nobody can instruct a doctor what treatment to provide, legally it has to be their own professional decision what is in the best interests of the patient.

Link to Capacity, care planning and advance care planning in life limiting illness: A Guide for Health and Social Care Staff from the National End of life care Programme – the best all-round guide for professionals.

Link to the Royal College of Physicians concise guidance Also a good guide, co-published with a lot of relevant organisations, but understandably a bit doctorish in approach.

Link to the latest practical guidance toolkit: Advance Care Planning: it all ADSE up. This dire punning title is based on the mnemonic for the main principles, according to the NEOLCP, of carrying out advance care planning: Ask – Document – Share – Evaluate. I can only imagine that government cuts have led to no money being available for marketing consultancy to the National End of Life Care Programme, which would undoubtedly have squished this naff title, but the content is practical and useful. At the end of this post a link to other useful guidelines.

People in the end-of-life care field (especially in the USA) tend to see acp as mainly concentrating on advance decisions, and decision-making in the last year of life,which nobody can predict, so that’s a bit of a nonsense. Professionals are supposed to ask themselves the ‘surprise question’ (whether they would be surprised if this patient died in the next twelve months and, if so, they are treated as in an end-of-life phase). The term has been given additional currency in the UK because it is used in association with the requirements of the Mental Capacity Act 2005 to take decisions on behalf of people who lack the mental capacity to make their own decisions, both in general and on agreeing to or refusing medical treatment. The American system allows the appointment of proxies to take decisions on your behalf; the British system allows you to complete official documents registered through the Office of the Public Guardian to appoint a friend or relative do this for money and separately for care matters. This is quite expensive and complicated, and it takes a long time.

Link to the Office of the Public Guardian.

Because of the provisions of the MCA, acp has extended its reach, because if you are employed to care for people who do not have capacity, it is your job to assess continuously their capacity to make decisions and to help them maintain and develop that capacity. So in residential care for older people, particularly those with dementia, advance care planning is a much more general process, involving helping people to decide how they want to live in a care home. You can see this represented in a good Advance Care Planning website, which is less concerned with end-of-life care decision-making, and represents a broader approach to acp.

Link to the care homes Advance Care Planning website.

The end-of-life care world and its literature, however, is still stuck with mainly missing this whole care homes acp industry, although there is some overlapping research, and guidance sometimes extends more broadly into care decisions. Part of the problem is the healthcare bias of the people working in end-of-life care and their general ignorance of social care.

A good summary of the basic  evidence about  acp in the palliative care field (written for non-specialist nurses by leading authorities) is contained in the St Christopher’s Hospice End of Life Journal: this is an internet journal that you can access free, but you have to register. Link to the article: Advance care planning: evidence and implications for practice

Another complication is the Scottish enthusiasm for anticipatory care planning, where there is very good guidance, and this also is more concerned with planning throughout the care career.

Link to the 2010 Scottish government website on anticipatory care planning.

Link to Healthier Scotland (simpler) guidelines for anticipatory care planning

Links to other guidelines:

Link to National End of Life Care Programme guidance on various aspects of advance care planning as part of the assessment stage of working with patients.

Link to SCIE, Department of Health and Help the Hospices Guide on Advance Decisions, referencing the Mental Capacity Act 2005 (2008 publication) Although a bit long in the tooth, this guide has the advantage that it specifically points up the requirements of the Mental Capacity Act, although be warned that there are a lot of legal developments on mental capacity, so it’s a bit out of date on the law. For professional practice, though, it’s still useful.

Link to recently-published tips for general practitioners (family doctors) from the Department of Health. As it’s for busy GPs, it’s very brief and explains things clearly from a community healthcare perspective.

Written by Malcolm Payne

24 January 2013 at 11:45 am

American audio case study on advance care planning for end-of-life care

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You might find this audio case study of advance care planning for end-of-life care in the USA useful. It is about Michele Tripi and her husband: she has multiple sclerosis (technical term: ALS, although really this covers a range of conditions; it also mentions Lou Gehrig’s disease; this is a popular American term for multiple sclerosis;  Gehrig was a sports star who had the condition and brought it to public notice). It covers some of the worries about making advance decisions to refuse medical treatment and what might go wrong.

Link to the audio case study.

It also provides useful links to the American Bar Association website on ageing and the law with a series of toolkits on making decisions in the US, and useful guidelines from Cedars-Sinai, a well-regarded US non-profit healthcare service.

My next post looks more broadly at advance care planning and has links to British guidance.

Written by Malcolm Payne

24 January 2013 at 11:06 am

Leave your own eulogy

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130114 My own eulogyAn interesting American website which allows you to record your own eulogy for your funeral (including pics and videos) so your relatives don’t have to work it out for themselves.

And you can tell the world how wonderful you were.

It also allows you to leave private messages, so you can slag off the relatives you don’t like.

Link to the website.

No doubt there are British or European equivalents, but this actually is presented fairly sensibly. It’s an example of how memorialisation is really important to many people. For social workers, it might be a useful way of getting people into a bit of advance planning for an important aspect of bereavement care

Written by Malcolm Payne

23 January 2013 at 11:41 am

Coping financially at end of life: US and UK info

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121222 Finanical planning in eolAfter the shooting at a school in Connecticut, here’s another comment on the attitudes to guns and money in the US, together with a comment on the high cost of end-of-life care. In a series of articles from CNN Money on managing the costs at end of life (which commendably focuses on talking and planning in advance), one comment is a joke: ‘My grandad was 96 failing health he asked me if he should buy a gun and wander off to the forest, to end things. I said absolutely not that would be ridiculous, you should just rent the gun’.

To see the three articles (these are American, but it’s interesting to see how it pans out in the US; British information below):

Link to the article on funeral costs.

Link to the article on advance care planning.

Link to the article on planning for survivors.

The focus of these articles is on each of the three phases of financial issues that arise in end-of-life care: planning for the costs of the illness, the funeral and financial reconstruction after the death.

These came out in research colleagues and I did evaluating a project for St Christopher’s Hospice, which was published at the time:

Bechelet, L., Heal, R., Leam, C. and Payne, M. (2008) Empowering carers to reconstruct their finances. Practice 20(4): 223-34.

Link to the journal website. But you have to pay – we don’t get anything from your payment – it’s all an outrageous level of profit for the publisher.

Margaret Reith and I also generalised this when we wrote our book:

Reith, M. and Payne, M. (2009) Social Work in End-of-Life and Palliative Care. Chicago: Lyceum; Bristol: Policy Press.

Link to the American publisher’s website: Lyceum Books.

Link to the British publisher’s website: Policy Press.

Here’s the table we created:

Table 5.4 Financial issues at different stages in the illness for caregivers

Stage What happens financially
1   Disease progression  creates financial stress for patient and family Employed patients and caregivers may lose some or all of income; long-term disability may lead to changes in social security, pensions, insurance or other benefits.Retirement pensions or other insurance or social security rights may be triggered.Additional costs of condition, treatments, travel to hospital.
2   Death Additional costs for funeral. Death or bereavement insurance or benefits compensate.Caregivers no longer receive financial support for their role.Caregivers may become entitled to widows’ dependents or other insurance or social security benefits
3   Post-death Long-term costs of illness or funeral.Long-term financial reconstruction for family.

Source: Developed from Bechelet et al (2008)

Written by Malcolm Payne

7 January 2013 at 11:06 am