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The Nuffield Council on Bioethics was established in 1991 and seeks to examine ethical issues raised by new developments in biology and medicine.
They are funded by the Nuffield Foundation, the Medical Research Council and the Welcome Trust.
After setting up an exploratory workshop in March 2007, the Council formed a Working Party in December 2007 to examine the ethical issues raised by dementia. This timely report is based on public consultation and meetings with stakeholders including people with dementia, carers, health professionals and other members of the public.
Key recommendations from the report
1. People should have access to good quality assessment and support from the time they, or their families, become concerned about symptoms of dementia.
2. Many of the services needed by people with dementia are classed as ‘social’, which are often not available until a crisis occurs. In allocating resources, it should make no difference whether the care is classified as ‘health’ or ‘social’.
3. Families should be treated as ‘partners in care’ by professionals. Trust is a key part of such a caring partnership.
4. Protecting people from harm is important, but minimising the risk of harm to a person with dementia may reduce their quality of life. ‘Risk assessments’ should be replaced by ‘risk-benefit assessments’ that take into account the well-being of the person with dementia.
5. More guidance for carers is needed on when restraint might count as ‘proportionate’. Carers need more support to help minimise the need for restraint at home.
6. The UK Departments of Health should consider how all those involved in the care of people with dementia can access education and support to help them deal with the many ethical difficulties that they face.
7. The Equality and Human Rights Commission should highlight the legal duties of service providers, such as shops and restaurants, to ensure people with dementia can use their services.
8. More guidance is needed on how to apply mental capacity legislation in practice, for example, how people with dementia can be involved in decisions about their care and treatment, and how past and present wishes should be taken into account where these conflict. The process of appointing a welfare attorney should be easy and free of charge for everyone.
9. There should be more funding for dementia research, including research into how people with dementia can be supported to live the best possible lives.
References
Cooper C, Selwood A, Blanchard M et al. (2009) Abuse of people with dementia by family carers: representative cross sectional study British Medical Journal 338: b155.
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The report entitled ‘Dementia: ethical issues’ was published in October 2009 and can be downloaded.
An ethical framework for dementia
The Council sets out 6 components to help those faced with day-to-day issues in dementia care. These include adopting a ‘case-based’ approach to ethical decisions. They recommend comparing ‘the situation’ with other ‘similar situations’ to find ethically relevant similarities or differences.
The report suggests that with good care and support, people with dementia can expect to have a ‘good quality of life throughout’ the course of their illness and also highlights the importance of promoting the interests of both the person with dementia and of those who care for them.
Finally, the ethical framework states that ‘the person with dementia remains the same, equally valued, person throughout the course of their illness’. The framework recognises extensive changes occur in mental abilities and other functions and this may include changes to personality.
An ethical approach to a care pathway for people with dementia
The recent emphasis on early intervention and diagnosis highlighted in the National Dementia Strategy (www.dh.gov.uk/ - search “National Dementia Strategy”) raises the issue of whether an early diagnosis may be harmful to the individual. This is more poignant given that a diagnosis may not be followed by an offer of available treatment, due to restrictive NICE guidelines on the prescribing of anti-dementia medications, or even certain other social care resources. Healthcare professionals should seek and respect the decisions of sufferers and their families with regard to seeking an early diagnosis or not, but we should try to ensure such decisions are well informed and that they are aware of the potential benefits of early diagnosis.
The report recommends that the Department of Health (DoH) encourages more research on the reasons why there is variation between cultures in readiness to come forward for diagnosis and the role that misinformation and misunderstanding plays in these reasons. In addition, they recommend the GMC and relevant Royal Colleges promote an approach of disclosure of a diagnosis of dementia that acknowledges the role of those close to the person with dementia.
In current practice, people are sometimes presented with a diagnosis of dementia and simply told to come back in a year’s time. The Council isof the view that this approach is morally wrong. Increased support, both practical and emotional, should be available and they welcome the proposal in the National Dementia Strategy to pilot models of ‘dementia care advisers’ to fulfil this role and aid in ‘sign-posting’ to suitable services.
End of life palliative care for people with dementia is often poor compared with people who do not have dementia. Both the National Dementia Strategy and the National Council for Palliative Care recognise the need to improve end of life patient care for people with dementia, highlighting the need for better links between those responsible for dementia care and those responsible for end of life care.
Dementia and society
The Council believe that for dementia to be ‘truly normalised’ it needs to become an accepted part of our society, in the same way that physical disability is increasingly recognised as part of the norm. They also recognise the way services are divided into ‘social’ and ‘health’ services and the detrimental effect this can have on accessing care. The method of allocating resources must be improved to prevent such unnecessary delays in the provision of care.
Making decisions
The Mental Capacity Act 2005 (MCA) provides a robust framework for supporting and protecting the best interests of people with dementia. The Act also makes specific provision to make ‘advance decisions’ to refuse treatment, even if that treatment may be life-saving. Past and present wishes should be discussed with relatives whenever possible and the Council recommend that the Act be amended to emphasise the importance of good communication and supportive relationships with families.
It is now possible for a person with capacity to nominate a ‘welfare attorney’ who will be empowered to take health or welfare decisions on their behalf after they lose capacity to do so themselves. This option provides more flexibility than an advance refusal of treatment but involves significant bureaucracy and fees to register with the Office of the Public Guardian (considerably higher than the previous fees for an Enduring Power of Attorney pre-MCA). Welfare attorneys are obliged by law to act in the individual’s best interests and where conflict arises between professionals and the attorney, a professional may override the attorney by applying to the court of protection. Such an intervention should only take place if the professional has grave concerns about the welfare of the incapacitated person, and not simply because they take a different view of best interests.
Dilemmas in care
Ethical dilemmas arise frequently for all those providing care for people with dementia. Education of those in professional roles is important but carers should also have access to the ongoing education needed to aid them to respond appropriately. The Council recommend that the DoH, as part of the National Dementia Strategy, consider how carers can access appropriate education and support in ethical decision-making.
The uses of restraint, including the use of medication to calm and control a person’s behaviour should only be considered where it is ‘proportionate’ to the risk of harm without such restraint. The Council recommend that more is done by the DoH and the Office of the Public Guardian to guide carers and professionals in what is and isn’t ‘proportionate’.
Abuse by family and friends
A recent survey in the UK among carers of people with dementia found that 1 per cent physically hurt or hit the person they cared for and 33 per cent had screamed or swore at them within the preceding 3 months (Cooper, 2009). Although all allegations and evidence of abuse must always be thoroughly investigated, it must be recognised that abuse and neglect may be the result of unmanageable pressure on the carer.
The needs of carers
Most people would wish their carer’s interests to be considered as well as their own. The autonomy of the person with dementia should therefore be seen in ‘relational’ terms in that it is necessary to support the whole family and social structure. Healthcare professionals should consider the needs of carers and understand that their needs are incorporated into what is in the person with dementia’s ‘best interests.’ Confidential information may be shared with carers if it is in the best interests of the person who lacks capacity to do so. The Council believes the current Mental Capacity Act Code of Practice is too restrictive on when this may be and suggests that there should be an assumption that the carer involved in making decisions should have the same level of information as any other member of the care team.
Research
When compared with other conditions, funding for dementia research is poor, especially given the prevalence and burden of the disease. The Council recommend that major research funders develop a reasoned basis for the division of their funds between research areas and that this should lead to significant increases in research funding for dementia. The report highlights the importance of social research in dementia, aiming at providing an evidence base to underpin better ways of supporting people with dementia and their carers. Particular difficulties arise when involving people in research if they lack the capacity to consent to the research. This may be overcome by developing an advance statement on research participation and allowing welfare attorneys to consent on the participants’ behalf (currently only possible in Scotland). Early diagnosis should allow dementia care advisers to discuss the issue of research and help arrange an advance decision for those that wish.
Richard McCollum and Martin Curtice
Old Age Psychiatrists
Birmingham
BGS Newsletter, February 2010
Issue 25 ISSN 1748-634000 25 |