Assessments of mental capacity: upholding the rights of the vulnerable or the misleading comfort of pseudo objectivity?

Purpose The purpose of this paper is to present findings from a research project which investigated the approaches of different groups of assessors to the mental capacity assessments which are required to be conducted as part of Deprivation of Liberty Safeguards (DOLS) Design/Methodology/Approach Four case study vignettes were given to participants.Three groups involved in the DOLS assessment process were interviewed by telephone about the factors that may influence their capacity assessments. Findings Most assessors did not refer to the required two stage test of capacity or the 'causative nexus' which requires that assessors must make clear that it is the identified 'diagnostic' element which is leading to the inability to meet the 'functional' requirements of the capacity test. The normative element of capacity assessments is acknowledged by a number of assessors who suggest that judging a person's ability to 'weigh' information, in particular, is a subjective and value based exercise, which is given pseudo objectivity by the language of the MCA. A number of elements of good practice were also identified. Research limitations. In this exploratory study, participant numbers were small (n= 21), and we relied on self-report rather than actual observations of practice or audit of completed assessments Practical Implications The findings are of relevance to all of those working in health and social care who undertake assessments of mental capacity, and will be helpful to all of those tasked with designing and delivering training in relation to the Mental Capacity Act 2005 (MCA). They also have relevance to policy makers in the UK who are involved with reforms to DOLS regulations, and to those in other countries which have legislation similar to the MCA. Originality/Value Much existing literature exhorts further training around the MCA. We suggest that an equally important task is for practitioners to understand and be explicit about the normative elements of the process, and the place of ethics and values alongside the more cognitive and procedural aspects of capacity assessments

Why are relatives of care home residents reluctant to ‘rock the boat’? Is there a culture of acceptance?

Purpose - The purpose of this paper is to explore whether relatives of care home residents are best placed to act as ‘champions’ or advocates for their family members, as is often the expectation. Design/methodology/approach - Focus groups and interviews were conducted with 25 relatives of residents in four care homes for older people in the South East of England. Two rounds of focus groups were held in each participating care home: the first was to discuss any issues arising from the care received, or concerns about the home itself; the second was to enable a deeper exploration of the key themes that arose from the first round and explore why relatives, in this case, failed to complain. Findings - Thematic analysis revealed a complex range of emotions experienced by relatives that contributed to a conflict between what they believed to be the correct response and how they behaved in reality, which led to a culture of acceptance. Analysis revealed some relatives were reluctant to ‘interfere’ for fear of possible negative repercussions, thus they downplayed issues in an attempt not to ‘rock the boat’. Originality/value - This paper discusses the flaws in the policy emphasis on personalisation and the reliance on family members as advocates, and concludes with suggestions on how care homes may foster an environment where relatives, and indeed residents, feel comfortable to raise issues and concerns

Planning for incapacity by people with bipolar disorder under the Mental Capacity Act 2005

The Mental Capacity Act 2005 provided a variety of legal mechanisms for people to plan for periods of incapacity for decisions relating to personal care, medical treatment, and financial matters. Little research has however been done to determine the degree to which these are actually implemented, and the approach to such advance planning by service users and professionals. This paper looks at the use of advance planning by people with bipolar disorder, using qualitative and quantitative surveys both of people with bipolar disorder and psychiatrists. The study finds that the mechanisms are under-used in this group, despite official policy in support of them, largely because of a lack of knowledge about them among service users, and there is considerable confusion among service users and professionals alike as to how the mechanisms operate. Recording is at best inconsistent, raising questions as to whether the mechanisms will be followed

Restraining Good Practice: Reviewing evidence of the effects of restraint from the perspective of service users and mental health professionals in the United Kingdom (UK)

Safeguarding, balancing the concept of risk with the need for public protection and its implication for the lives of individuals, is an important facet of contemporary mental health care. Integral to safeguarding is the protection of human rights; the right to live free from torture, inhuman or degrading treatment, and having the right to liberty, security, respect and privacy. Professionals are required to recognise all of these rights when delivering care to vulnerable people. In the United Kingdom (UK) there has been growing public concern regarding abusive practices in institutions, with a number of unacceptable methods of restraint being identified as a feature of care, particularly in mental health care. In keeping with the service user movement, and following a review of the literature, this paper discusses the evidence regarding restraint from the perspectives of service users and professionals within mental health services and considers the implications for future practice and research. In reviewing the literature findings revealed restraint can be a form of abuse, it’s inappropriate use often being a consequence of fear, neglect and lack of using de-escalation techniques. Using restraint in this way can have negative implications for the well-being of service users and mental health professionals alike

A critical realist evaluation of advance care planning in care homes

Aims: To evaluate care planning in advance of end-of-life care in care homes. Design: A qualitative study. Methods: Qualitative data were collected from January 2018–July 2019 (using focus groups and semi-structured interviews) from three care homes in the South West of England. The data were analysed using thematic analysis followed by Critical Realist Evaluation. Results: Participants comprised of registered nurses (N = 4), care assistants (N = 8), bereaved relatives (N = 7), and domiciliary staff (N = 3). Although the importance of advance care planning was well recognized, the emotional labour of frequently engaging in discussions about death and dying was highlighted as a problem by some care home staff. It was evident that in some cases care home staff's unmet emotional needs led them to rushing and avoiding discussions about death and dying with residents and relatives. A sparsity of mechanisms to support care home staff's emotional needs was noted across all three care homes. Furthermore, a lack of training and knowledge appeared to inhibit care home staff's ability to engage in meaningful care planning conversations with specific groups of residents such as those living with dementia. The lack of training was principally evident amongst non-registered care home staff and those with non-formal caring roles such as housekeeping. Conclusion: There is a need for more focused education to support registered and non-registered care home staff to effectively engage in sensitive discussions about death and dying with residents. Furthermore, greater emotional support is necessary to help build workforce resilience and sustain change. Impact: Knowledge generated from this study can be used to inform the design and development of future advance care planning interventions capable of supporting the delivery of high-quality end-of-life care in care homes

A critical realist evaluation of advance care planning in care homes

Aims: To evaluate care planning in advance of end-of-life care in care homes. Design: A qualitative study. Methods: Qualitative data were collected from January 2018–July 2019 (using focus groups and semi-structured interviews) from three care homes in the South West of England. The data were analysed using thematic analysis followed by Critical Realist Evaluation. Results: Participants comprised of registered nurses (N = 4), care assistants (N = 8), bereaved relatives (N = 7), and domiciliary staff (N = 3). Although the importance of advance care planning was well recognized, the emotional labour of frequently engaging in discussions about death and dying was highlighted as a problem by some care home staff. It was evident that in some cases care home staff's unmet emotional needs led them to rushing and avoiding discussions about death and dying with residents and relatives. A sparsity of mechanisms to support care home staff's emotional needs was noted across all three care homes. Furthermore, a lack of training and knowledge appeared to inhibit care home staff's ability to engage in meaningful care planning conversations with specific groups of residents such as those living with dementia. The lack of training was principally evident amongst non-registered care home staff and those with non-formal caring roles such as housekeeping. Conclusion: There is a need for more focused education to support registered and non-registered care home staff to effectively engage in sensitive discussions about death and dying with residents. Furthermore, greater emotional support is necessary to help build workforce resilience and sustain change. Impact: Knowledge generated from this study can be used to inform the design and development of future advance care planning interventions capable of supporting the delivery of high-quality end-of-life care in care homes

Pain and delirium in people with dementia in the acute general hospital setting

YesBackground: Pain and delirium are common in people with dementia admitted to hospitals. These are often under-diagnosed and under-treated. Pain is implicated as a cause of delirium but this association has not been investigated in this setting. Objective: To investigate the relationship between pain and delirium in people with dementia, on admission and throughout a hospital admission. Design: Exploratory secondary analysis of observational prospective longitudinal cohort data. Setting: Two acute hospitals in the UK. Methodology: Two-hundred and thirty participants aged ≥70 years were assessed for dementia severity, delirium ((Confusion Assessment Method (CAM), pain (Pain Assessment in Advanced Dementia (PAINAD)) scale and prescription of analgesics. Logistic and linear regressions explored the relationship between pain and delirium using cross-sectional data. Results: Pain at rest developed in 49%, and pain during activity for 26% of participants during their inpatient stay. Incident delirium developed in 15%, of participants, and 42% remained delirious for at least two assessments. Of the 35% of participants who were delirious and unable to self-report pain, 33% of these participants experienced pain at rest, and 56 experienced pain during activity. The odds of being delirious were 3.26 times higher in participants experiencing pain at rest (95% Confidence Interval 1.03–10.25, P = 0.044). Conclusion: An association between pain at rest and delirium was found, suggesting pain may be a risk factor for delirium. Since pain and delirium were found to persist and develop during an inpatient stay, regular pain and delirium assessments are required to manage pain and delirium effectively.The Impact of Acute Hospitalisation on People with Dementia: The Behaviour and Pain (BepAID Study (jointly funded by the Alzheimer’s Society and BUPA foundation (Grant reference number: 131). Dr Sampson’s, Dr White’s, Dr Kupeli’s and Miss Vickerstaff ’s posts are supported by Marie Curie core funding, grant (MCCC-FCO-16-U)

The challenges in monitoring and preventing patient safety incidents for people with intellectual disabilities in NHS acute hospitals: evidence from a mixed-methods study.

BACKGROUND: There has been evidence in recent years that people with intellectual disabilities in acute hospitals are at risk of preventable deterioration due to failures of the healthcare services to implement the reasonable adjustments they need. The aim of this paper is to explore the challenges in monitoring and preventing patient safety incidents involving people with intellectual disabilities, to describe patient safety issues faced by patients with intellectual disabilities in NHS acute hospitals, and investigate underlying contributory factors. METHODS: This was a 21-month mixed-method study involving interviews, questionnaires, observation and monitoring of incident reports to assess the implementation of recommendations designed to improve care provided for patients with intellectual disabilities and explore the factors that compromise or promote patient safety. Six acute NHS Trusts in England took part. Data collection included: questionnaires to clinical hospital staff (n = 990); questionnaires to carers (n = 88); interviews with: hospital staff including senior managers, nurses and doctors (n = 68) and carers (n = 37); observation of in-patients with intellectual disabilities (n = 8); monitoring of incident reports (n = 272) and complaints involving people with intellectual disabilities. RESULTS: Staff did not always readily identify patient safety issues or report them. Incident reports focused mostly around events causing immediate or potential physical harm, such as falls. Hospitals lacked effective systems for identifying patients with intellectual disabilities within their service, making monitoring safety incidents for this group difficult.The safety issues described by the participants were mostly related to delays and omissions of care, in particular: inadequate provision of basic nursing care, misdiagnosis, delayed investigations and treatment, and non-treatment decisions and Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) orders. CONCLUSIONS: The events leading to avoidable harm for patients with intellectual disabilities are not always recognised as safety incidents, and may be difficult to attribute as causal to the harm suffered. Acts of omission (failure to give care) are more difficult to recognise, capture and monitor than acts of commission (giving the wrong care). In order to improve patient safety for this group, the reasonable adjustments needed by individual patients should be identified, documented and monitored

The acceptability and feasibility of using the Adult Social Care Outcomes Toolkit (ASCOT) to inform practice in care homes

Background: The Adult Social Care Outcomes Toolkit (ASCOT) measures social care related quality of life (SCRQoL) and can be used to measure outcomes and demonstrate impact across different social care settings. This exploratory study built on previous work by collecting new inter-rater reliability data on the mixed-methods version of the toolkit and exploring how it might be used to inform practice in four case study homes. Method: We worked with two care home providers to agree an in-depth study collecting SCRQoL data in four case-study homes. Data was collected about residents’ age, ethnicity, cognitive impairment, ability to perform activities of daily living and SCRQoL in the four homes. Feedback sessions with staff and managers were held in the homes two weeks after baseline and follow-up data collected three months later. Interviews with managers explored their views of the feedback and recorded any changes that had been made because of it. Results: Participant recruitment was challenging, despite working in partnership with the homes. Resident response rates ranged from 23 to 54 % with 58 residents from four care homes taking part in the research. 53 % lacked capacity to consent. Inter-rater reliability for the ASCOT ratings of SCRQoL were good at time one (IRR = 0.72) and excellent at time two (IRR = 0.76). During the study, residents’ ability to perform activities of daily living declined significantly (z = -2.67, p < .01), as did their expected needs in the absence of services (z = -2.41, p < .05). Despite these rapid declines in functionings, residents’ current SCRQoL declined slightly but not significantly (Z = -1.49, p = .14). Staff responded positively to the feedback given and managers reported implementing changes in practice because of it. Conclusion: This exploratory study faced many challenges in the recruitment of residents, many of whom were cognitively impaired. Nevertheless, without a mixed-methods approach many of the residents living in the care homes would have been excluded from the research altogether or had their views represented only by a representative or proxy. The value of the mixed-methods toolkit and its potential for use by providers is discussed