S. Duke

Review: A narrative review of the published ethical debates in palliative care research and an assessment of their adequacy to inform research governance

The quality of research, and the resulting quality of evidence available to guide palliative care, is dependent on the ethical decisions underpinning its design, conduct and report. Whilst much has been published debating the ethics of palliative care research, an assessment of the quality and synthesis of the central debates is not available. Such a review is timely to inform research governance. The methodology of this study is based on the principles of systematic reviews. Fifty-seven papers were reviewed following a thorough search, and were critically appraised for their literary quality, the knowledge on which they drew and the research standards they addressed. The debates identified address vulnerability, moral appropriateness, consent, gate-keeping and inclusion and research culture. The quality of debate and the sources of knowledge varied. The debate was rich in quality and knowledge with respect to the protection of the dignity, rights and safety of research participants, but less developed in relation to those of researchers and other staff. There is also little debate about the ethics of reporting of research and the ethics underpinning research leadership. A framework is offered that reconciles the ethical issues raised with potential methodological strategies identified from the review.

Supporting carers to manage pain medication in cancer patients at the end of life: A feasibility trial

Background: Carers of people with advanced cancer play a significant role in managing pain medication, yet they report insufficient information and support to do so confidently and competently. There is limited research evidence on the best ways for clinicians to help carers with medication management. Aims: To develop a pain medicines management intervention (Cancer Carers Medicines Management) for cancer patients’ carers near the end of life and evaluate feasibility and acceptability to nurses and carers. To test the feasibility of trial research procedures and to inform decisions concerning a full-scale randomised controlled trial. Design: Phase I-II clinical trial. A systematic, evidence-informed participatory method was used to develop CCMM: a nurse-delivered structured conversational process. A two-arm, cluster randomised controlled feasibility trial of Cancer Carers Medicines Management was conducted, with an embedded qualitative study to evaluate participants’ experiences of Cancer Carers Medicines Management and trial procedures. Setting: Community settings in two study sites. Participants: Phase I comprises 57 carers, patients and healthcare professionals and Phase II comprises 12 nurses and 15 carers. Results: A novel intervention was developed. Nurses were recruited and randomised. Carer recruitment to the trial was problematic with fewer than predicted eligible participants, and nurses judged a high proportion unsuitable to recruit into the study. Attrition rates following recruitment were typical for the study population. Cancer Carers Medicines Management was acceptable to carers and nurses who took part, and some benefits were identified. Conclusion: Cancer Carers Medicines Management is a robustly developed medicines management intervention which merits further research to test its effectiveness to improve carers’ management of pain medicines with patients at the end of life. The study highlighted aspects of trial design that need to be considered in future research.

The networks of care surrounding cancer palliative care patients

Objectives This paper explicates the nature and extent of the networks of care surrounding patients with cancer palliative care needs. Method Twenty-four patients with 15 different types/sites of cancer were recruited in one city in England, UK. During one in-depth interview patients identified who was ‘involved in their care’ and any known pathways of communication between them. One hundred of these people (35 doctors, 32 nurses, 17 professions allied to medicine, 8 family members and 8 others) were also interviewed. Maps of people/teams and the connections between them for each patient were then reconstructed using social networking software (PAJEK). Results The 24 patients identified a total of 619 people or teams (mean 26, median 22, range 9–45 per patient) contributing to their care. Selected care network maps are displayed, illustrating the extent and nature of the care networks supporting palliative care patients. Common members of care networks for patients with palliative care needs are revealed, but their individual and unique nature is also apparent. Conclusions The possible clinical utility and challenges of mapping care networks are discussed. Exploring the care networks surrounding individual patients can be useful for illuminating the extent and complexity of individual patients care networks; clarifying who is involved and who they communicate with; providing opportunities to see interaction routes that may otherwise be hidden, revealing potentially missing or weak connections; and highlighting overlaps or gaps in provision.

Palliative care patients’ perceptions of the work involved in understanding and managing the network of care provision surrounding them

Objective To explore the work carried out for cancer palliative care patients in understanding and dealing with the often large network of care provision surrounding them. Method Qualitative thematic analysis of interviews with 24 patients (aged 48–85 years) with 15 different types/sites of cancer and palliative care needs. Results The main theme of ‘patient work—their strategies and project management’ is presented. Subthemes included: being organised and keeping records; planning ahead and coordinating care; information gathering; understanding the hierarchy and knowing who the key people are; strategies to remember names and roles; understanding and ‘working the system’. Insights are given into the work carried out on patients’ behalf by family, although it was unclear who would do this work if no family was available. Some of the challenges faced by patients and families are identified. These included limited information; uncertainty when care is transferred between different teams or locations; deciding who to contact and how; and negotiating through gatekeepers. Conclusions The number and variety of people contributing to the care of a cancer palliative care patient can be difficult for patients and family to comprehend. Work is required by patients or family on their behalf to achieve the level of understanding required to become accomplished at navigating the system and project managing their care organisation, and is probably influenced by role expectations and previous experience. Much of this additional, often hidden, workload for patients and family could probably be reduced with clear, timely information provision by health professionals.

Cancer Carers Medicines Management: a study to develop and test an educational intervention for carers of cancer patients approaching end of life at home [Abstract]

Background: Oral mucositis (OM) is a common debiliating adverse effect following high dose chemotherapy prior to bone marrow transplantation. OM often interferes with food intake and lead to malnutrition, weight loss and impaired quality of life. These adverse effects may require intravenous morphine for pain alleviation, Although uncomfortable to the patient, oral cryotherapy with ice chips has been shown to reduce the grade and extent of OM. Purpose: The purpose of the present study is to evaluate whether an intraoral cooling device has the same effectiveness as ice chips when it comes to cooling the oral mucosa. Method: Five healthy volunteers (mean age 36.2 years) chewed ice under surveillance for 30 minutes. Before the start of and immediately after the termination of the ice chewing, the intraoral mucosal temperature was measured using a modified thermometer. The same protocol was used to asses the cooling efficacy obtained by the newly developed intraoral device. Results: No statistical significant differences in cooling of teh oral mucosa (p=0.12) were obtained. The mean surface temperature following cooling was 25.7 degrees Celcius with ice chips and 24.7 degrees Celcius with the cooling device. Conclucion: The cooling device is as effective as ice chips in terms of cooling the oral mucosa. The next step in this research is to use the cooling devise to establish the highest surface temperature of the oral mucosa, during infusion of chemotherapy, that will still result in prevention of oral mucositis.Introduction Lifestyle interventions might be useful in the management of adverse effects of androgen deprivation therapy (ADT) in men with prostate cancer. Objectives To examine the effects of dietary and exercise interventions on quality of life (QoL), metabolic risk factors and androgen deficiency symptoms in men with prostate cancer undergoing ADT. Methods CINAHL, Cochrane library, Medline and PsychINFO were searched to identify randomised controlled trials published from January, 2004 to October, 2014. Data extraction and methodological quality assessment was independently conducted by two reviewers. Meta-analysis was conducted using RevMan® 5.3.5. Results Of 2183 articles retrieved, 11 studies met the inclusion criteria and had low risk of bias.Nine studies evaluated exercise (resistance and/or aerobic and/or counselling) and three evaluated dietary supplementation. Median sample size =79 (33–121) and median intervention duration was 12 weeks (12–24). Exercise improved QoL measures (SMD 0.26, 95%CI −0.01 to 0.53) but not body composition, metabolic risk or vasomotor symptoms. Qualitative analysis indicated soy (or isoflavone) supplementation did not improve vasomotor symptoms; however, may improve QoL. Conclusions Few studies have evaluated the efficacy of lifestyle interventions in the management of adverse effects of ADT. We found inconclusive results for exercise in improving QoL and negative results for other outcomes. For soy-based products, we found negative results for modifying vasomotor symptoms and inconclusive results for improving QoL. Future work should investigate the best mode of exercise for improving QoL and other interventions such as dietary counselling should be investigated for their potential to modify these outcomes.

Experiences and support needs of older care givers caring for family members (or friends) with cancer

Background 77% of cancer deaths occur in people aged 65 years and over. However, research has largely focused on younger adults, leading to a lack of understanding of the complex needs of older adults with cancer and their family care givers. Aims To explore the experience and support needs of older family care givers in end of life care. Methods A longitudinal study using indepth interviews and structured measure of service use (OMFAQ). 25 pairs were recruited via specialist palliative care nurses, comprising one person with cancer and their lay care giver, all aged 65 years and over. Mean age was 78 years. Mean length of relationships was 44 years. 25 indepth interviews were conducted; 19 second interviews two to four weeks later and 11 final interviews 6 months after the first. Data analysis was based on the process of microanalysis, constant comparison and theory development described by Strauss and Corbin (1998, 2008). Results A theoretical model of family caregiving was developed which suggests that the experience of family caregiving is characterised by a sense of anticipated loss in the context of which ties of duty and loyalty exert a strong influence. Arising from this central experience are a range of caregiving strategies, notably care management, maintaining the household and negotiating relationships with health and social care professionals, that focus on achieving a sense of equilibrium or containment across physical, functional and emotional domains. Conclusions The pressure to keep up with the responsibilities of caregiving leads to a strict scheduling of day-to-day life. Maintaining a sense of good governance within this concentrated and condensed physical and metaphysical space can be difficult. Supportive interventions are needed for care givers and should focus on providing relief from the difficulty of accommodating caregiving demands, and the tendency towards an increasingly tightly boundaried day-to-day life.