Charlotte Emmett

Planning for tomorrow whilst living for today: the views of people with dementia and their families on advance care planning

BACKGROUND Advance care planning (ACP) is increasingly prominent in many countries; however, the evidence base for its acceptability and effectiveness is limited especially in conditions where cognition is impaired, as in dementia. METHOD This qualitative study used semi-structured interviews with people with mild to moderate dementia (n = 17) and family carers (n = 29) to investigate their views about planning for their future generally and ACP specifically. RESULTS People with dementia and their families make a number of plans for the future. Most people undertook practical, personal, financial, and legal planning. However participants did not make formal advance care plans with the exception of appointing someone to manage their financial affairs. Five barriers to undertaking ACP were identified: lack of knowledge and awareness, difficulty in finding the right time, a preference for informal plans over written documentation, constraints on choice around future care, and lack of support to make choices about future healthcare. CONCLUSIONS Health and social care professionals can build on peoples preferences for informal planning by exploring the assumptions underlying them, providing information about the possible illness trajectory and discussing the options of care available. Health and social care professionals also have a role to play in highlighting the aspects of ACP which seem to be most relevant to the wishes and aspirations of people with dementia.

Homeward bound or bound for a home? Assessing the capacity of dementia patients to make decisions about hospital discharge: comparing practice with legal standards

BACKGROUND This article stems from a larger project which considers ways of improving assessments of capacity and judgements about best interests in connection with people with dementia admitted to acute hospitals with respect to decisions about place of residence. AIMS Our aim is to comment on how assessments of residence capacity are actually performed on general hospital wards compared with legal standards for the assessment of capacity set out in the Mental Capacity Act, 2005 (MCA). METHOD Our findings are grounded in ethnographic ward-based observations and in-depth interviews conducted in three hospital wards, in two hospitals (acute and rehabilitation), within two NHS healthcare trusts in the North of England over a period of nine months between 2008 and 2009. Twenty-nine patient cases were recruited to the study. We also draw from broader conceptions of capacity found in domestic and international legal, medical, ethical and social science literature. RESULTS Our findings suggest that whilst professionals profess to be familiar with broad legal standards governing the assessment of capacity under the MCA, these standards are not routinely applied in practice in general hospital settings when assessing capacity to decide place of residence on discharge from hospital. We discuss whether the criteria set out in the MCA and the guidance in its Code of Practice are sufficient when assessing residence capacity, given the particular ambiguities and complexities of this capacity. CONCLUSIONS We conclude by suggesting that more specific legal standards are required when assessing capacity in this particular context.

Going home? An ethnographic study of assessment of capacity and best interests in people with dementia being discharged from hospital

BackgroundA significant proportion of patients in an acute hospital is made up of older people, many of whom have cognitive impairment or dementia. Rightly or wrongly, if a degree of confusion is apparent, it is often questioned whether the person is able to return to the previous place of residence. We wished to understand how, on medical wards, judgements about capacity and best interests with respect to going home are made for people with dementia and how decision-making around hospital discharge for people with dementia and their families might be improved. Our research reflects the jurisdiction in which we work, but the importance of residence capacity rests on its implications for basic human rights.MethodsThe research employed a ward-based ethnography. Observational data were captured through detailed fieldnotes, in-depth interviews, medical-record review and focus groups. Themes and key issues were identified using constant comparative analysis of 29 cases. Theoretical sampling of key stakeholders was undertaken, including patients with dementia (with and without residence capacity), their relatives and a range of practitioners. The research was carried out in three hospital wards (acute and rehabilitation) in two hospitals within two National Health Service (NHS) healthcare trusts in the North of England over a period of nine months between 2008 and 2009.ResultsOur analysis highlights the complexity of judgements about capacity and best interests in relation to decisions about place of residence for people with dementia facing discharge from hospital. Five key themes emerged from data: the complexity of borderline decisions; the requirement for better understanding of assessment approaches in relation to residence capacity; the need for better documentation; the importance of narrative; and the crucial relevance of time and timing in making these decisions.ConclusionsWe need: more support and training for practitioners, as well as support for patients and families; clarity about the information to be imparted to the person with dementia; more advocacy for people with dementia; appropriate assessments embedded in routine clinical practice; the patient with dementia to be centre-stage; and properly resourced step-down or rehabilitation units to facilitate timely and good decision-making about place of residence.

Value judgements and conceptual tensions: decision-making in relation to hospital discharge for people with dementia

We reflect, using a vignette, on conceptual tensions and the value judgements that lie behind difficult decisions about whether or not the older person with dementia should return home or move into long-term care following hospital admission. The paper seeks, first, to expose some of the difficulties arising from the assessment of residence capacity, particularly around the nature of evaluative judgements and conceptual tensions inherent in the legal approach to capacity. Secondly, we consider the assessment of best interests around place of residence, which demonstrates significant conceptual tensions. In addition, ‘best interests’ raise issues around the perception of risk and the perceptions of the family and crucially involve the notions of autonomy and trust. Finally, we not only gesture at some practical considerations based on insights from values-based medicine, but also make the suggestion that we require tighter functional assessments of residence capacity coupled with broader judgements about best interests.

Two important legal events that may radically shape the future delivery of dementia care in England and Wales

Dementia care environments are now home to thousands of people with complex mental and physical health needs and questionable capacity. This often creates situations where restrictive practises are used, such as restraining someone in order to provide personal care. Increasingly, those who work in dementia care are being called upon to sanction restrictive practices and need to be alive to the various legal rights and liabilities of those concerned. A poor understanding of the laws that govern the work we do risks exposing older people to an inappropriate and disproportionate use of restraint and those concerned to civil and criminal liability. Two important events earlier this year illustrate the need for a better understanding of the legal frameworks that govern this area: In February, the House of Lords’ Select Committee published its post-legislative report on the Mental Capacity Act 2005 (MCA) indicating (amongst other things) a widespread lack of understanding of the Act amongst professionals and service users and a need to ‘embed’ it more in practice. The MCA is the statutory framework that sanctions certain acts in connection with the care of incapacitated adults, including restraint (in narrowly prescribed circumstances), where those acts are proportionate and in an incapacitated person’s ‘best interests’. A separate common law framework governs the treatment of people with dementia who retain decisional capacity who can give informed consent and make autonomous choices; treating competent adults without their consent will expose professionals to legal liability. As many people with dementia have residual or fluctuating capacity, professionals must be familiar with both the MCA and its Code of Practice and common law framework relating to capable adults. Also, in March 2014, the Supreme Court ruling in the Cheshire West case clarified, but significantly broadened, the concept of a deprivation of liberty (DOL) in health and social care settings. When the state is responsible for caring for individuals in circumstances that amount to a DOL, the detention must be authorised (as being necessary and in their best interests) in order to avoid contravening article 5 European Convention on Human Rights. The court’s ‘acid test’ of whether a DOL exists is whether someone is under ‘under continuous supervision and control’ and is ‘not free to leave’ the place where they reside. Clearly, this can apply to many people with dementia in hospitals, care homes or community settings (including their own homes) who will have to have their DOL authorised by the MCA DOL Safeguards or the Court of Protection. The resource issues for health trusts and local authorities will be substantial. And of course, difficult judgements about when a ‘restriction’ of liberty constitutes a DOL need to be made. Clinicians working into community settings need to be particularly aware of the legal frameworks which should inform their practice as they become part of a care team that might make decisions, which would be non-defensible in law The legal issues that arise when restrictive care practices are employed are multifarious and complex. We advocate that better ‘practice based’ legal training for practitioners is needed around the use of restraint in dementia care so that the human rights of the vulnerable are protected and care we deliver is legally (and ethically) defensible.

Legal implications of restrictive physical interventions in people with dementia

Dementia care environments are now home to thousands of people who have complex mental and physical health needs. Many of these people have lost capacity or have fluctuating capacity to make decisions about their care. There can be times when restrictive physical interventions are necessary to protect a persons wellbeing and to administer required treatment and care. However, nurses working in care settings may not be aware of their rights and liabilities, and those of care staff, when such interventions are used for therapeutic purposes. This article seeks to address areas of uncertainty and clarify the legal responsibilities of care teams by exploring the issues raised through a fictitious case vignette.

Resuscitation decisions at the end of life: medical views and the juridification of practice

Background Concerns about decision making related to resuscitation have led to two important challenges in the courts resulting in new legal precedents for decision-making practice. Systematic research investigating the experiences of doctors involved in decisions about resuscitation in light of the recent changes in law remains lacking. Aim To analyse the practice of resuscitation decision making on hospital wards from the perspectives of doctors. Design The data presented in this paper were collected as part of a wider research study of end-of-life care in an acute hospital setting. Data collection comprised ethnographic non-participant observation on two acute hospital wards and individual interviews with patients, relatives and healthcare professionals caring for patients thought to be approaching the end of life. Data were analysed using a constructivist grounded theory approach. Results Discussions and decision making about resuscitation present many challenges for those involved on acute medical wards. The data highlight the potential for multiple interpretations of legal precedents, creating misunderstandings that may impact patient care in less positive ways. Conclusions This paper provides unique insights into how doctors respond to the changing medico-legal culture and the subsequent effects on patient care. It demonstrates how the juridification of medical practice can occur. It highlights the potential benefit of a structure to support clinicians, patients and relatives in discussing and navigating decisions around care at the end of life in line with the patient’s wishes and preferences. Recommendations for future research are made and legal ramifications are discussed.

Care home placement and human rights.

In their editorial examining the pros and cons of different places of living for older people, Bally and Jung considered who enters residential and nursing (care) homes and how care in these settings might be improved.1 Research cited drew attention to factors that have a bearing on quality of life and respecting people’s wishes.2 GPs should be able to identify those who may benefit from a care home,3 …

Legal implications of restrictive physical interventions in people with dementia: Using a case study, Louisa Jackman and colleagues examine the rights and responsibilities of staff in care homes

Dementia care environments are now home to thousands of people who have complex mental and physical health needs. Many of these people have lost capacity or have fluctuating capacity to make decisions about their care. There can be times when restrictive physical interventions are necessary to protect a persons wellbeing and to administer required treatment and care. However, nurses working in care settings may not be aware of their rights and liabilities, and those of care staff, when such interventions are used for therapeutic purposes. This article seeks to address areas of uncertainty and clarify the legal responsibilities of care teams by exploring the issues raised through a fictitious case vignette.

Legal implications of restrictive interventions in residents with dementia

Dementia care environments are now home to thousands of people who have complex mental and physical health needs. Many of these people have lost capacity or have fluctuating capacity to make decisions about their care. There can be times when restrictive physical interventions are necessary to protect a persons wellbeing and to administer required treatment and care. However, nurses working in care settings may not be aware of their rights and liabilities, and those of care staff, when such interventions are used for therapeutic purposes. This article seeks to address areas of uncertainty and clarify the legal responsibilities of care teams by exploring the issues raised through a fictitious case vignette.