Out-of-hours GPs and palliative care-a qualitative study exploring information exchange and communication issues

Abstract Background Out-of-hours general practitioners (GPs) cover the community over a significant proportion of a given week, and palliative care patients are seen as a priority. Little is known about how well these GPs feel supported in their line of work and whether communication exchanges work well for the proportion of their patients who have palliative care needs. For this study, GPs who provide out-of-hours care were interviewed in order to explore factors that they identified as detrimental or beneficial for good communication between themselves, patients, relatives and other professionals, specifically to palliative care encounters. Methods Nine GPs were interviewed using face-to-face semi-structured interviews. All nine GPs worked regular out-of-hours sessions. Data from transcripts was analysed using Interpretative Phenomenological Analysis. Results A predominant theme expressed by GPs related to constraints within the system provided by the local private company owned out-of-hours provider. A strong feeling of 'being alone out there' emerged, with some GPs more willing to call for help than others, and others expressing their concern at access to pharmacies and medication being very inconsistent. Out-of-hours GPs felt left alone on occasion, unable to access daytime services and not knowing who to call for advice. Information hand-over systems from in-hours to out-of-hours with regard to palliative care were felt to be inadequate. Out-of-hours doctors interviewed felt left out of the care loop; handover sheets from specialist palliative care providers were a rarity. Conclusions Out-of-hours services need to be mindful of the needs of the GPs they employ, in particular relating to the palliative care they provide in this setting. Other healthcare professionals should aim to keep their local out-of-hours service informed about palliative care patients they may be called to see.</p

Methods of assessing late radiotherapy effects on bowel function

Purpose of review Pelvic radiation disease in the form of chronic radiation-induced consequences of treatment is under recognized by healthcare professionals and under reported by patients. Gastrointestinal symptoms are not routinely assessed, and may not be causally associated with previous radiotherapy. These symptoms are therefore often under treated.Recent findings A literature search was conducted in Ovid Medline, which included Epub Ahead of Print, In-Process & Other Non-Indexed Citations and Ovid Embase for articles published between 2016 and April 2018. A total of 11 articles were selected for review. A wide range of patient reported outcome measure instruments are used in research and practice. Clinical symptom grading is restricted to a fewer number of tools but may not always capture issues, such as urgency, that are important to the patient. Clinician and patient concordance in the assessment of outcomes is limited. Initiatives to prompt communication of the relative risks of the late consequences of treatment and comparative effectiveness of treatments decisions are developing, as are new techniques to limit irradiation of healthy tissue.Summary Nonstandardized outcome measurement reduces the ability to aggregate toxicity and patient outcomes across clinical trials. The development of standardized screening and treatment algorithms for gastrointestinal symptoms can systematically locate and treat gastrointestinal late effects of treatment

“It still haunts me whether we did the right thing”: a qualitative analysis of free text survey data on the bereavement experiences and support needs of family caregivers

Background Research suggests that there may be bereavement experiences and support needs which are specific to family caregivers providing end of life care (EoLC), although this remains an under-researched area. This paper focuses on themes relating to bereavement which were derived from an analysis of free text survey responses collected in a research priority setting exercise for palliative and EoLC. Methods The priority setting exercise involved a public survey, designed to generate research priorities. Rather than identify research topics, many people instead described their experiences and raised more general questions relating to palliative and end of life care. To explore these experiences and perspectives a supplementary thematic analysis was conducted on the survey responses. 1403 respondents took part, including patients, current and bereaved carers, health and social care professionals, volunteers and members of the public. Results Several grief issues were identified, which seem specific to the experiences of family caregivers. Responses demonstrated a relationship between death experiences, feelings of guilt and bereavement outcomes for some family caregivers, as well as caregiver experiences of a “void” created by the withdrawal of professional support after death. Communication and support needs were also identified by participants. Conclusion This analysis provides further evidence of some of the specific effects that caring for a loved one at the end of life can have on bereavement experiences. Finding ways of improving communication around the time of death and effective follow up approaches post death could help to address some of these issues

Palliative care as progressive journey : the interplay of hope and social death in nurse-patient encounters across three care settings

In this study I examine the care trajectory of terminally ill patients across three different sites in the hospice setting: home care, day therapy unit and in-patient unit. I will focus on the patients' journey and the nurses' ways of working in each setting as the continuum of care progresses towards the end of life. Much of this work is accomplished through talk, so by focusing the analysis on nurse-patient encounters, this study aims to fill a gap in this sensitive area of health and social care. The study is rooted in the prevailing philosophy of palliative care which aims to address 'total pain', that is, social, emotional, and spiritual, as well as physically occurring phenomena. Upon diagnosis of terminal illness, it will be argued, the patient undergoes a shift in the conceptualisation of 'self. The focus of my analyses will therefore be the interlocking themes of social death and hope vis-a-vis the biological event. I will argue that the concept of social death mediates the interactional trajectories, while hope and 'healing', in the palliative sense, may be seen as counterpoints to the inevitability of the end-of-life journey. The process of social death can be viewed as a continuum as patients experience physical losses and deterioration that will in most cases lead to the institutional setting of the in-patient unit. Palliative care nurses and patients have the opportunity to intersect the continuum with interactional strategies that have the potential to promote hope in order to deflect from the suffering of total pain. The main findings can be captured in terms of the contextual differences across the three care settings as the care process occurs at different stages of the patient's terminal journey. For the purposes of demonstrating the complex interplay of these experiential domains, I adopt a theme- oriented discourse analysis

The challenge pathway: a mixed methods evaluation of an innovative care model for the palliative and end-of-life care of people with dementia (innovative practice)

An innovative service for the palliative and end-of-life care of people with dementia was introduced at a UK hospice. This evaluation involved analysis of audit data, semi-structured interviews with project staff (n=3) and surveys of family carers (n=15) and professionals (n=20). The service has increased access to palliative, end-of-life care and other services. Improvements were reported in the knowledge, confidence and care skills of family carers and professionals. Carers felt better supported and it was perceived that the service enabled more patients to be cared for at home or in their usual place of care

Why do patients decline surgical trials? Findings from a qualitative interview study embedded in the Cancer Research UK BOLERO trial (Bladder cancer: Open versus Lapararoscopic or RObotic cystectomy)

Background Surgical trials have typically experienced recruitment difficulties when compared with other types of oncology trials. Qualitative studies have an important role to play in exploring reasons for low recruitment, although to date few such studies have been carried out that are embedded in surgical trials. The BOLERO trial (Bladder cancer: Open versus Lapararoscopic or RObotic cystectomy) is a study to determine the feasibility of randomisation to open versus laparoscopic access/robotic cystectomy in patients with bladder cancer. We describe the results of a qualitative study embedded within the clinical trial that explored why patients decline randomisation. Methods Ten semi-structured interviews with patients who declined randomisation to the clinical trial, and two interviews with recruiting research nurses were conducted. Data were analysed for key themes. Results The majority of patients declined the trial because they had preferences for a particular treatment arm, and in usual practice could choose which surgical method they would be given. In most cases the robotic option was preferred. Patients described an intuitive ‘sense’ that favoured the new technology and had carried out their own inquiries, including Internet research and talking with previous patients and friends and family with medical backgrounds. Medical histories and lifestyle considerations also shaped these personalised choices. Of importance too, however, were the messages patients perceived from their clinical encounters. Whilst some patients felt their surgeon favoured the robotic option, others interpreted ‘indirect’ cues such as the ‘established’ reputation of the surgeon and surgical method and comments made during clinical assessments. Many patients expressed a wish for greater direction from their surgeon when making these decisions. Conclusion For trials where the ‘new technology’ is available to patients, there will likely be difficulties with recruitment. Greater attention could be paid to how messages about treatment options and the trial are conveyed across the whole clinical setting. However, if it is too difficult to challenge such messages, then questions should be asked about whether genuine and convincing equipoise can be presented and perceived in such trials. This calls for consideration of whether alternative methods of generating evidence could be used when evaluating surgical techniques which are established and routinely available

Virtual consultations: the experience of oncology and palliative care healthcare professionals

Objectives: To maintain continuity of care during the Covid-19 pandemic, virtual consultations (VC) became the mainstay of patient-healthcare practitioner interactions. The aim of this study was to explore the views of oncology and palliative care healthcare professionals (HCPs) regarding the medium of VC. Method: A cross sectional mixed methodology observational study of oncology and palliative care HCPs, analysed via an inductive thematic approach. This was undertaken in accordance with relevant guidelines and regulations. Results: 87 surveys were completed. Three master themes were identified. Personal, professional, and familial factors including patient age, illness and VC skillset all influenced practitioner’s experience of VC. Relationships and connection were highlighted by survey respondents as important influences, with a perception that VC could reduce usual relationships with patients, compared to previous face-to-face consults. There was a perceived loss in these domains with VC. Sharing bad news and having challenging conversations was seen as particularly difficult via VC. Many survey respondents emphasized that they preferred to have first time consultations face-to-face, and not virtually. Within the domain of logistical and practical implications reduced travel and increased accessibility were seen as a significant benefit of VC. The inability to examine patients and concerns regarding missing clinical signs was emphasised as a significant worry, alongside the challenges faced with occasionally failing technology. Conclusion: VC were felt to have a role for those patients who are already known to professionals, where there was an established relationship. VC for difficult discussions and for unstable patients were felt to be inadequate. Triaging patient suitability prior to offering VC, with emphasis on the importance of patient choice, was seen as a priority in this new era of VC

Managing, making sense of and finding meaning in advanced illness: a qualitative exploration of the coping and wellbeing experiences of patients with lung cancer

Coping plays an essential role in maintaining the wellbeing of patients with cancer. A number of different coping responses and strategies have been identified in the literature. The value and relevance of meaning based coping theory has also been emphasised, including Antonovosky’s (1979) Sense of Coherence (SoC) theory. Ten patients with advanced lung cancer were interviewed up to three times. A total of twenty in depth interviews were carried out, fully transcribed and data were analysed following a methodology of Interpretative Phenomenological Analysis. Three broad domains were identified to categorise the core life concerns of participants; making sense of and managing one’s illness; maintaining daily life and relationships and confronting the future. Within these domains multiple coping themes are identified, which to varying degrees help to maintain patient wellbeing and quality of life. This paper considers the relevance of SoC theory for understanding the coping experiences of patients with advanced cancer, and identifies resources and factors likely to support patient coping, with implications for health and social care services