NICE end-of-life quality standards: critical comment - 1

NICE end-of-life quality standards: critical comment

December 6th, 2011 by Malcolm Payne, St Christophers Hospice, London

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 workers 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 peoples last few years, not restricting that planning to when some healthcare professional has decided youve got a major illness. Aside

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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. Its good that theres 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:

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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 theyre still current). Were 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 wont tell them about pain and they might not get a real handle on the long-term mixture of minor problematic conditions in most older peoples 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 alwayson 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.

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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 patients family prior to death, and they certainly wont 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 dont 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.

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This is just not going to happen on a general basis; Im 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:
y y y y y y y y y y y y y y y y

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 dont accept our plans for where you are going to be cared for, we dont 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.

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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 its 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, theres 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 also contains links to a lot of other useful documents, 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 carecommissioned 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_101 684.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 doesnt).