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1.  Alternative forms of hydration in patients with cancer in the last days of life: study protocol for a randomised controlled trial 
Trials  2015;16:464.
The provision of clinically assisted hydration at the end of life is one of the most contentious issues in medicine, and indeed within the general population. The reasons for contention include: a) the lack of evidence for or against; b) the disparate opinions of healthcare professionals; and c) the generally positive opinions of patients and their carers about clinically assisted hydration.
The study is a cluster randomised trial to assess the feasibility of conducting an adequately powered, randomised controlled trial of clinically assisted hydration in patients with cancer in the last days of life. Twelve sites, four National Health Service (NHS) hospitals and eight NHS/voluntary sector hospices in the United Kingdom, will be randomised to give either standard intervention A: continuance of oral intake and regular mouth care, or standard intervention B: continuance of oral intake, regular mouth care and clinically assisted hydration. Patients will be included if they: i) have a diagnosis of cancer; ii) are aged ≥ 18 yr; iii) have an estimated prognosis of ≤ 1 week and iv) are unable to maintain sufficient oral intake (1 L per day, measured/estimated); and v) are able to give informed consent. Patients will be excluded if they have contra-indications to receiving clinically assisted hydration. The primary endpoint of interest is the frequency of hyperactive delirium (‘terminal agitation‘), and this will be assessed using the Modified Richmond Agitation and Sedation Scale (administered every four hours). Other data to be collected include the frequency of pain, respiratory secretions (‘death rattle‘), dyspnoea, nausea and vomiting, adverse effects to clinically assisted hydration and overall survival. In addition, data will be collected on the use of anti-psychotic drugs, sedative drugs, analgesics, anti-secretory drugs and other end-of-life medication. The study has obtained full ethical approval.
A randomised controlled trial of clinically assisted hydration in end-of-life care is urgently required. This feasibility study will allow methodological and ethical issues to be understood and addressed to ensure that a robust, adequately powered, randomised controlled trial is designed.
Trial registration NCT02344927 (registered 4 June 2014).
Electronic supplementary material
The online version of this article (doi:10.1186/s13063-015-0988-3) contains supplementary material, which is available to authorized users.
PMCID: PMC4607172  PMID: 26466809
End-of-life care; Clinically assisted hydration; Palliative care
2.  The experiences of detained mental health service users: issues of dignity in care 
BMC Medical Ethics  2014;15:50.
When mental health service users are detained under a Section of the Mental Health Act (MHA), they must remain in hospital for a specific time period. This is often against their will, as they are considered a danger to themselves and/or others. By virtue of being detained, service users are assumed to have lost control of an element of their behaviour and as a result their dignity could be compromised. Caring for detained service users has particular challenges for healthcare professionals. Respecting the dignity of others is a key element of the code of conduct for health professionals. Often from the service user perspective this is ignored.
This paper reports on the experiences of 19 adult service users who were, at the time of interview, detained under a Section of the MHA. These service users had experienced coercive interventions and they gave their account of how they considered their dignity to be protected (or not), and their sense of self respected (or not).
The service users considered their dignity and respect compromised by 1) not being ‘heard’ by staff members, 2) a lack of involvement in decision-making regarding their care, 3) a lack of information about their treatment plans particularly medication, 4) lack of access to more talking therapies and therapeutic engagement, and 5) the physical setting/environment and lack of daily activities to alleviate their boredom.
Dignity and respect are important values in recovery and practitioners need time to engage with service user narratives and to reflect on the ethics of their practice.
PMCID: PMC4114162  PMID: 24972627
Detained; Mental health; Service users; Dignity; Ethics; Nursing; Respect
3.  Perspectives on medicine adherence in service users and carers with experience of legally sanctioned detention and medication: a qualitative study 
To explore and analyze perceptions of service users and caregivers on adherence and nonadherence to medication in a mental health care context.
Mental health medication adherence is considered problematic and legal coercion exists in many countries.
This was a qualitative study aiming to explore perceptions of medication adherence from the perspective of the service user (and their caregiver, where possible).
Eighteen mental health service users (and six caregivers) with histories of medication nonadherence and repeated compulsory admission were recruited from voluntary sector support groups in England.
Data were collected between 2008 and 2010. Using qualitative coding techniques, the study analyzed interview and focus group data from service users, previously subjected to compulsory medication under mental health law, or their caregivers.
The process of medication adherence or nonadherence is encapsulated in an explanatory narrative. This narrative constitutes participants’ struggle to negotiate acceptable and effective routes through variable quality of care. Results indicated that service users and caregivers eventually accepted the reality of their own mental illness and their need for safety and treatment. They perceived the behavior of professionals as key in their recovery process. Professionals could be enabling or disabling with regard to adherence to medication.
This study investigated service user and caregiver perceptions of medication adherence and compulsory treatment. Participants described a process perceived as variable and potentially doubly faceted. The behavior of professionals was seen as crucial in collaborative decision making on medication adherence.
PMCID: PMC3749064  PMID: 23990714
medication; mental health service users; medication adherence; service user perspectives; grounded theory
4.  Dignity in the care of older people – a review of the theoretical and empirical literature 
BMC Nursing  2008;7:11.
Dignity has become a central concern in UK health policy in relation to older and vulnerable people. The empirical and theoretical literature relating to dignity is extensive and as likely to confound and confuse as to clarify the meaning of dignity for nurses in practice. The aim of this paper is critically to examine the literature and to address the following questions: What does dignity mean? What promotes and diminishes dignity? And how might dignity be operationalised in the care of older people?
This paper critically reviews the theoretical and empirical literature relating to dignity and clarifies the meaning and implications of dignity in relation to the care of older people. If nurses are to provide dignified care clarification is an essential first step.
This is a review article, critically examining papers reporting theoretical perspectives and empirical studies relating to dignity. The following databases were searched: Assia, BHI, CINAHL, Social Services Abstracts, IBSS, Web of Knowledge Social Sciences Citation Index and Arts & Humanities Citation Index and location of books a chapters in philosophy literature. An analytical approach was adopted to the publications reviewed, focusing on the objectives of the review.
Results and discussion
We review a range of theoretical and empirical accounts of dignity and identify key dignity promoting factors evident in the literature, including staff attitudes and behaviour; environment; culture of care; and the performance of specific care activities. Although there is scope to learn more about cultural aspects of dignity we know a good deal about dignity in care in general terms.
We argue that what is required is to provide sufficient support and education to help nurses understand dignity and adequate resources to operationalise dignity in their everyday practice. Using the themes identified from our review we offer proposals for the direction of future research.
PMCID: PMC2483981  PMID: 18620561

Results 1-4 (4)