Objectives: To gain preliminary data regarding the prevalence of proximal deep vein thrombosis (DVT) in those with non-malignant conditions admitted to specialist palliative care units (SPCUs).
Methods: Data were collected as part of a prospective longitudinal observational study in five SPCUs in England, Wales and Northern Ireland (Registration: ISRCTN97567719) to estimate the prevalence of proximal femoral vein DVT in people admitted to SPCUs. The primary outcome for this exploratory substudy was the prevalence of DVT in patients with non-malignant palliative conditions. Consecutive consenting adults underwent bilateral femoral vein ultrasonography within 48 hours of admission. Data were collected on symptoms associated with venous thromboembolism. Patients were ineligible if the estimated prognosis was <5 days. Cross-sectional descriptive analysis was conducted on baseline data and prevalence estimates presented with 95% CIs.
Results: 1390 patients were screened, 28 patients had non-malignant disease and all were recruited. The mean age 68·8 (SD 12·0), range 43–86 years; men 61%; survival mean 86 (SD 108.5) range 1–345 days. No patient had a history of venous thromboembolism. Four (14%) were receiving thromboprophylaxis. Of 22 evaluable scans, 8 (36%, 95% CI: 17% to 59%) showed femoral vein DVT. The level of reported relevant symptoms (leg oedema, leg pain, chest pain and breathlessness) was high irrespective of the presence of DVT.
Conclusions: Our exploratory data indicate one in three people admitted to an SPCU with non-malignant disease had a femoral vein DVT. Although definitive conclusions cannot be drawn, these data justify a larger prospective survey.
Recruitment challenges to clinical research studies in palliative care settings, particularly in hospices, are well documented. However, a recent study (Hospice Inpatient Deep vein thrombosis Detection (HIDDen) study) performed across five hospices in the UK recruited above target and on time. We describe strategies that aided successful recruitment in this study, and the lessons learnt for improving future studies. A recent review suggested that the 'Social Marketing Mix Framework' (SMMF) could help researchers with recruitment strategies in palliative care. We describe the recruiting strategies employed through the Social Marketing Mix lens and consider if it would be a useful framework for future researchers to use at the planning stage. Successful recruitment strategies employed in HIDDen study included: (i) addressing particular study-related factors, (ii) ensuring all patients were screened and offered participation if eligible, (iii) reducing impact on the clinical team through dedicated research nurses at sites, (iv) addressing research team issues with cross-cover between sites, where geographically possible, and (v) regular video conferencing meetings for support and collaborative solving of challenges. Limited pre-existing research infrastructure at most of the recruiting hospices created particular challenges. The SMMF provides a potential structure to help researchers to plan recruitment. However, to fully streamline trial set up and in order for hospice involvement in research to be realised systematically, a centralised approach to governance, organisational culture change whereby hospices embrace research as a legitimate purpose and consistent access to research staff are identified as key strategic elements promoting recruitment to studies in hospices.
BACKGROUND: Internationally, it is widely accepted that holistic care is as an integral part of the care for people with motor neurone disease (MND), and their informal carers. However the optimal role of generalist and specialist palliative care, and how it integrates with specialist neurology services, is not fully established. Using a qualitative approach we sought to examine end of life care for people with MND in Northern Ireland, and the role of specialist and generalist palliative care.
METHODS: Qualitative study involving a convenience sample of 13 bereaved carers recruited using the Northern Ireland MND Register. Data collection consisted of semi-structured interviews with the bereaved carers of patients who had died 3-24 months previously with a diagnosis of MND. Data were analysed using thematic analysis.
RESULTS: Findings illuminated variations in relation to the levels of holistic care provided to this cohort of patients. Unmanaged respiratory and psychological symptoms caused perceived distress amongst patients. Participants' experiences additionally highlighted reluctance amongst patients with MND to engage with services such as specialist palliative care. Conversely, for those who received input from specialist palliative care services carers portrayed these services to be of great benefit to the patient.
CONCLUSIONS: Patients with MND in Northern Ireland may have many unmet holistic care needs. Key areas that require particular focus in terms of service development include neuromuscular respiratory physiotherapy and psychological services for patients. Future research must explore an optimal model of holistic care delivery for patients with MND and how this can be effectively integrated to best meet this patient cohorts palliative care needs.
Background: The prevalence of deep venous thrombosis in patients with advanced cancer is unconfirmed and it is unknown whether current international thromboprophylaxis guidance is applicable to this population. We aimed to determine prevalence and predictors of femoral deep vein thrombosis in patients admitted to specialist palliative care units (SPCUs).
Methods: We did this prospective longitudinal observational study in five SPCUs in England, Wales, and Northern Ireland (four hospices and one palliative care unit). Consecutive adults with cancer underwent bilateral femoral vein ultrasonography on admission and weekly until death or discharge for a maximum of 3 weeks. Data were collected on performance status, attributable symptoms, and variables known to be associated with venous thromboembolism. Patients with a short estimated prognosis (<5 days) were ineligible. The primary endpoint of the study was the prevalence of femoral deep vein thrombosis within 48 h of SPCU admission, analysed by intention to treat. This study is registered with the ISRCTN registry, number ISRCTN97567719.
Findings: Between June 20, 2016, and Oct 16, 2017, 343 participants were enrolled (mean age 68·2 years [SD 12·8; range 25–102]; 179 [52%] male; mean Australian-modified Karnofsky performance status 49 [SD 16·6; range 20–90]). Of 273 patients with evaluable scans, 92 (34%, 95% CI 28–40) had femoral deep vein thrombosis. Four participants with a scan showing no deep vein thrombosis on admission developed a deep vein thrombosis on repeat scanning over 21 days. Previous venous thromboembolism (p=0·014), being bedbound in the past 12 weeks for any reason (p=0·003), and lower limb oedema (p=0·009) independently predicted deep vein thrombosis. Serum albumin concentration (p=0·43), thromboprophylaxis (p=0·17), and survival (p=0·45) were unrelated to deep vein thrombosis.
Interpretation: About a third of patients with advanced cancer admitted to SPCUs had a femoral deep vein thrombosis. Deep vein thrombosis was not associated with thromboprophylaxis, survival, or symptoms other than leg oedema. These findings are consistent with venous thromboembolism being a manifestation of advanced disease rather than a cause of premature death. Thromboprophylaxis for SPCU inpatients with poor performance status seems to be of little benefit.
BACKGROUND: Education has been highlighted as fundamental in equipping healthcare professionals with essential knowledge and skills to provide good end-of-life care. Multiprofessional educational programmes have a positive influence on knowledge, attitude and confidence but few have sought to understand the longer term impact on care delivery. The European Certificate in Essential Palliative Care is an 8-week home-study-based programme for healthcare professionals and is currently run in nine centres. Successful candidates have undertaken the course from their own countries around the world. This article describes the evaluation of the European Certificate in Essential Palliative Care which has been evolving over 15 years.
AIMS: To evaluate the impact an educational intervention has on participants' confidence in palliative care, to determine whether this is sustained over time and explore participants' perception of the influence of the course on confidence.
DESIGN: A mixed-method longitudinal approach.
SETTING/PARTICIPANTS: A survey using a self-efficacy scale was emailed to 342 candidates who received an educational intervention and semi-structured interviews to a sub-sample of 15 candidates at baseline, 3 and 6 months.
RESULTS: At 3 months, candidates had almost 20 times higher odds of being above any given level of confidence than at baseline which was sustained at 6 months. Qualitative analysis identified examples of increased competence and confidence improving palliative care delivery.
CONCLUSION: Findings suggest that the European Certificate in Essential Palliative Care improves confidence in palliative care and that this is sustained over time with evidence of confidence in symptom control, communication and a holistic approach in clinical practice.
BACKGROUND: Observational pain tools (OPTs) are widely recommended in health care policies, clinical guidelines, and recommendations for pain assessment and management. However, it is unclear whether and how these tools are used for patients with advanced dementia approaching the end of life.
AIM: To explore hospice, secondary, and primary care physicians' and nurses' use of OPTs with patients dying with advanced dementia and their perspectives on practice development and training needs.
METHODS: Twenty-three physicians and 24 nurses with experience of caring for people dying with advanced dementia were recruited from primary care surgeries (n = 5), hospitals (n = 6), hospices (n = 4), and nursing homes (n = 10). Semistructured, face-to-face interviews were conducted. Interviews were digitally recorded, transcribed verbatim, and thematic analysis applied to identify core themes.
RESULTS: Three key themes emerged: (1) use of OPTs in this vulnerable patient population, (2) barriers to the use of OPTs and lack of perceived "added value", and (3) perspectives on practice development and training in pain assessment in advanced dementia at end of life. Just over one-quarter of participants (n = 13) routinely used OPTs. Reasons for nonuse included perceived limitations of such tools, difficulties with their use and integration with existing practice, and lack of perceived added value. Most participants strongly emphasised a need for ongoing training and development which facilitated transfer of knowledge and multidisciplinary skills across professions and specialties.
CONCLUSIONS: Health professionals require ongoing support in developing and integrating change to existing pain assessment protocols and approaches. These findings have important implications for health education, practice, and policy.
BACKGROUND: Patient held records need to be evaluated in palliative care settings.
OBJECTIVES: To evaluate how patients, families and professionals in a specialist palliative setting use a patient held record created through close consultation with patients and carers.
METHODS: A mixed methods prospective longitudinal cohort study in the UK-adult patients under community specialist palliative care nurse review or attending day hospice were given questionnaires at record introduction and after 4-6 weeks. Hospice staff completed a questionnaire and focus group after 8 months.
RESULTS: From Sept 2016 to June 2017, 550 patients were screened, 347 (63.1%) were offered records and 259 accepted (74.6%). 238 accepted a research pack, 105 returned questionnaire 1 (44.1% response rate) and 26 returned questionnaire 2 (24.8% of initial respondents). Questionnaire 1 (patients): 40% found it burdensome repeating information, and almost 70% were interested in a record to reduce this. Questionnaire 2 (patients): 74% found the record easy to use, but few (4, 15.4%) used it regularly. Over 60% stated the record was useful and would recommend it to others, despite not using it themselves. Professionals indicated that it was mainly patients and relatives who used the record, not non-palliative professionals.
CONCLUSIONS: While initial uptake of the record was high, use appeared low. While people saw real value in the record for others, they did not generally use it themselves. This evaluation demonstrates that patient held records are unlikely to be used by palliative care patients even though they see value in the concept.
Clare White, Clare McVeigh, Sue Foster, Lynn Dunwoody and Max Watson describe research that assessed the effectiveness of a distance learning course run by the Northern Ireland Hospice that is designed to enhance health care professionals’ practice in caring for patients with dementia.
Background: Pain management is a cornerstone of palliative care. The clinical issues encountered by physicians when managing pain in patients dying with advanced dementia, and how these may impact on prescribing and treatment, are unknown.
Aim: To explore physicians’ experiences of pain management for patients nearing the end of life, the impact of these on prescribing and treatment approaches, and the methods employed to overcome these challenges.
Design: Qualitative, semi-structured interview study exploring barriers to and facilitators of pain management, prescribing and treatment decisions, and training needs. Thematic analysis was used to elicit key themes.
Setting/participants: A total of 23 physicians, responsible for treating patients with advanced dementia approaching the end of life, were recruited from primary care (n = 9), psychiatry (n = 7) and hospice care (n = 7).
Results: Six themes emerged: diagnosing pain, complex prescribing and treatment approaches, side effects and adverse events, route of administration, importance of sharing knowledge and training needs. Knowledge exchange was often practised through liaison with physicians from other specialities. Cross-speciality mentoring and the creation of knowledge networks were believed to improve pain management in this patient population.
Conclusion: Pain management in end-stage dementia is complex, requiring cross-population of knowledge between palliative care specialists and non-specialists, in addition to collateral information provided by other health professionals and patients’ families. Regular, cost- and time-effective mentoring and ongoing professional development are perceived to be essential in empowering physicians to meet clinical challenges in this area.
BACKGROUND: Constipation is an important issue for patients receiving palliative care within specialist palliative care settings. Questions and ambiguity, however, persist about international best practice and management.
AIM: To synthesise the current evidence base on the assessment and management of constipation for palliative care patients within a specialist palliative care setting.
DESIGN: This is a systematic review.
DATA SOURCES: MEDLINE, Embase, CINAHL, Scopus and Cochrane databases were systematically searched in April 2017 for empirical studies, written in English, on the assessment and management of constipation in specialist palliative care settings, published between 2007 and 2017. Two researchers independently reviewed and critically appraised all studies, conducted data extraction, and undertook a thematic analysis.
RESULTS: In total, 13 studies were included in the review comprising randomised trials (n = 3), observational (n = 4) and descriptive studies (n = 6). Most research was conducted in specialist palliative care units, targeting either healthcare professionals or patients. The analysis highlighted a lack of standard definition of constipation, raising questions on the existence and comparability of baseline prevalence figures, the physical and psychological impact on patients, resource impact on staff and service, the subjective and objective methods of assessing constipation, and key aspects of constipation management, including a lack of focus on non-pharmacological management in this setting.
CONCLUSION: The results of this review are being used to inform the development of an educational intervention targeting healthcare professionals. Gaps in the evidence base include lack of consistent definition of constipation, constipation prevention, non-pharmacological management, and the consideration of the management of constipation for the dying patient.
Il existe peu de preuves concernant les médicaments personnels du patient et l'administration de ces médicaments directement depuis les tables de chevet dans les unités de soins palliatifs. Le centre de soins palliatifs d'Irlande du Nord a mené une étude pour évaluer l'utilisation des médicaments personnels des patients alliée à un système de tables de chevet sécurisées dans une unité de soins. Le temps passé par les infirmières à administrer ces médicaments a diminué, ainsi que le coût de l'hospitalisation des patients et des médicaments prescrits à la sortie du patient, de même que le nombre d'oublis de prise de traitement. L'administration des médicaments personnels des patients depuis leur table de chevet présente un potentiel de bénéfices mesurables dans un établissement de soins palliatifs. [d'après résumé revue]
La prescription électronique offre plusieurs avantages, y compris une réduction des erreurs de médication, mais les systèmes disponibles ne sont pas adaptés aux centres spécialisés comme les unités de soins palliatifs. Les auteurs ont mené une enquête auprès de médecins de soins palliatifs, d'infirmières et de pharmaciens en Irlande du Nord concernant leur système idéal de prescription électronique.
Cette enquête, réalisée auprès de 110 chefs de services de soins palliatifs au Royaume-Uni et en Irlande, a démontré que de nombreuses ressources budgétaires étaient attribuées aux pratiques de réanimation cardio-pulmonaire mais que les politiques et pratiques varient considérablement d'un service à l'autre.
La prévalence du diabète est plus élevée en soins palliatifs et sa prise en charge peut s'avérer difficile. Les auteurs présentent les différents traitements et modes de prise en charge pour les diabètes en fin de vie.
Les auteurs présentent le Princess Alice Hospice Certificate in Essential Palliative Care, CEPC (Certificat de soins palliatifs de base du Princess Alice Hospice) conçu pour répondre aux besoins de formation en soins palliatifs des professionnels de santé.
La présence de dentistes dans les équipes de soins palliatifs est reconnue. Une bonne prise en charge bucco-dentaire suppose une connaissance des pathologies buccales par les soignants. Les pathologies rencontrées sont entre autres, la xérostomie, les infections fongiques, les problèmes de prothèses, les ulcères de la bouche, les douleurs, les caries dentaires et la parodontolyse. Les auteurs insistent sur la nécessité d'une formation pour les soignants et montrent que l'attention portée aux soins dentaires fait partie intégrante d'une prise en charge globale.