A survey of hospice day services in the United Kingdom & Republic of Ireland : how did hospices offer social support to palliative care patients, pre-pandemic?

INTRODUCTION: Social support is described by patients and other stakeholders to be a valuable component of palliative day care. Less is known about the range of hospice services that have been used in practice that facilitate social support. An online survey aimed to gain an overview of all hospice day services that facilitated social support for adults outside of their own homes. METHODS: An online survey was distributed via email to people involved in managing hospice day services. Questions were asked on hospice characteristics, including staff and volunteer roles. Respondents were asked to identify services they felt offered social support to patients. Data collection took place between August 2017 and May 2018. RESULTS: Responses were received from 103 hospices in the UK and ROI (response rate 49.5%). Results provide an overview of hospice day and outpatient services that offer social support to patients. These are: multi-component interventions, activity groups, formal support groups, befriending, and informal social activities. Multi-component interventions, such as palliative day care, were the most commonly reported. Their stated aims tend to focus on clinical aspects, but many survey respondents considered these multicomponent interventions to be the 'most social' service at their hospice. The survey also identified a huge variety of activity groups, as well as formal therapeutic support groups. Informal 'social-only' activities were present, but less common. Over a third of all the services were described as 'drop in'. Most responding hospices did not routinely use patient reported outcome measures in their 'most social' services. CONCLUSIONS: The survey documents hospice activity in facilitating social support to be diverse and evolving. At the time of data collection, many hospices offered multiple different services by which a patient might obtain social support outside of their own home and in the presence of other patients.

Effectiveness of palliative care interventions offering social support to people with life-limiting illness-A systematic review.

Individuals managing the challenges of life-limiting illness require adequate social support to maintain quality of life. Qualitative research reports that patients value highly the social support obtained in palliative care interventions such as day care and group therapies. This systematic review aims to summarise existing quantitative evidence on palliative care interventions that facilitate social support. Research literature was systematically searched using electronic databases and key journals. Searches returned a total of 6,247 unique titles of which sixteen were eligible for inclusion. Interventions include group therapies, group practical interventions and palliative day care. Outcome measures and study designs were heterogeneous. Only one study used a validated outcome measure of social support. Benefits were influenced by participant characteristics such as baseline distress. Partial economic evaluation was attempted by two studies. Methodological challenges include attrition and use of outcome measures that were insensitive to change. Statistically significant results were reported in psychological and physical domains. Evidence is limited due to methodological issues and a scarcity of quantitative research, particularly regarding long-term benefits and cost-effectiveness. Interventions may be more beneficial to some groups than others.

Burden, emotional distress and quality of life among informal caregivers of lung cancer patients: An exploratory study.

This study was conducted to explore the interrelationships among caregiver burden, emotional status and quality of life (QoL) in caregivers of lung cancer patients, and to identify whether caregiver burden and health status are associated with patient emotional status and QoL. Forty-three dyads of lung cancer patients and their caregivers were included for analysis. Caregiver-reported outcomes were measured by Caregiver Burden Scale (CBS), Caregivers Quality of Life Index-Cancer (CQOLC) and Hospital Anxiety and Depression Scale (HADS), while patient-reported outcomes were collected by HADS and Lung Cancer Symptom Scale (LCSS). The majority of the CBS and CQOLC scores were significantly higher in anxious and depressed caregivers than non-anxious and non-depressed caregivers (p < .01 or .05). Caregivers of depressed patients experienced significantly greater emotional distress than those of non-depressed patients (p < .01). Significantly positive associations were identified among most of the CBS, CQOLC and caregiver HADS scores. Patient LCSS scores were positively correlated with the CBS and caregiver HADS scores, and patient HADS scores were also positively related to caregiver HADS scores. The close interrelationships between caregiver and patient health outcomes provide evidence that lung cancer patients and their caregivers should be viewed as a unit in future supportive service models.

Participation in a randomised controlled feasibility study of a complex intervention for the management of the Respiratory Symptom Distress Cluster in lung cancer: patient, carer and research staff views.

This paper reports finding from a nested qualitative study designed to elicit the views and perceptions of those who participated in a randomised controlled feasibility trial testing a non-pharmacological intervention, Respiratory Distress Symptom Intervention (RDSI), for the management of the breathlessness-cough-fatigue symptom cluster in lung cancer. Semi-structured interviews were conducted with 11 lung cancer patients, three caregivers and seven researchers involved in recruitment, consent, RDSI training and delivery and participant follow-up. Thematic analysis identified key considerations including: the importance of informed consent emphasising commitment to completion of paperwork and raising awareness of potential sensitivities relating to content of questionnaires; ensuring screening for the presence of symptoms reflects the language used by patients; appreciation of the commitment required from participants to learn intervention techniques and embed them as part of everyday life; conduct of interviews with patients who decline to participate; and conduct of serial interviews with those receiving RDSI to further inform its routine implementation into clinical practice. This study will inform the development of a fully powered follow-on trial testing the hypothesis that RDSI plus usual care is superior to usual care alone in the effective management of this symptom cluster in lung cancer.

Development and evaluation of an intervention to support family caregivers of people with cancer to provide home-based care at the end of life: a feasibility study.

PURPOSE: To design and evaluate an intervention to address carers' needs for practical information and support skills when caring for a person with cancer at end of life. METHOD: Phase I 29 carers were interviewed about need for practical information, support skills and their preferences for information delivery. The preferred format was a booklet. Phase 2 evaluated the booklet. 31 carers and 14 district nurses participated. Validated questionnaires: on perceptions of caregiving and carer health before and after the booklet was used and interviews with both carers and nurses were untertaken.24 carers completed both interviews. Quantitative data were coded using scale manuals and analysed using SPSSv20 and interview data was analysed thematically. RESULTS: Carers were aged 31-82 and cared for people aged 50-92; 8 carers were male and 23 female; 20 cared for a partner, 8 for a parent and 1 for a sibling (2 undisclosed). Carers were positive about the booklet, however many carers would have liked the booklet earlier. Carers reported feeling more positive about caregiving, and more reassured and competent in their role. District nurses found the booklet useful and reported receiving fewer phone calls from study carers than others in similar situations. CONCLUSIONS: The booklet intervention was a source of reassurance to carers and it has the potential to be incorporated into everyday practice. The challenge is in when and how to distribute the booklet and more work is required on the timing of delivery in order to maximise the usefulness of booklet to carers.

The effectiveness and cost-effectiveness of acupressure for the control and management of chemotherapy-related acute and delayed nausea: Assessment of Nausea in Chemotherapy Research (ANCHoR), a randomised controlled trial.

BACKGROUND: Chemotherapy-induced nausea and vomiting remain difficult symptoms to manage in clinical practice. As standard antiemetic drugs do not fully eliminate these symptoms, it is important to explore the adjuvant role of non-pharmacological and complementary therapies in antiemetic management approaches. Acupressure is one such treatment showing highly suggestive evidence so far of a positive effect, meriting further investigation. OBJECTIVES: The primary objective was to assess the effectiveness and cost-effectiveness of self-acupressure using wristbands compared with sham acupressure wristbands and standard care alone in the management of chemotherapy-induced nausea. Secondary objectives included assessment of the effectiveness and cost-effectiveness of the wristbands in relation to vomiting and quality of life and exploration of any age, gender and emetogenic risk effects. DESIGN: Randomised three-arm sham-controlled trial (Assessment of Nausea in Chemotherapy Research or ANCHoR) with an economic evaluation. Arms include the wristband arm, the sham wristband arm and the standard care only arm. Randomisation consisted of minimisation with a random element balancing for gender, age (16-24, > 24-50, >50 years) and three levels of emetogenic chemotherapy (low, moderate and high). Qualitative interviews were incorporated to shed more light on the quantitative findings. SETTING: Outpatient chemotherapy clinics in three regions in the UK involving 14 different cancer units/centres. PARTICIPANTS: Chemotherapy-naive cancer patients receiving chemotherapy of low, moderate and high emetogenic risk. INTERVENTION: The intervention was acupressure wristbands pressing the P6 point (anterior surface of the forearm). MAIN OUTCOME MEASURES: The Rhodes Index for Nausea/Vomiting, the Multinational Association of Supportive Care in Cancer (MASCC) Antiemesis Tool and the Functional Assessment of Cancer Therapy - General (FACT-G). At baseline participants completed measures of anxiety/depression, nausea/vomiting expectation and expectations from using the wristbands. RESULTS: In total, 500 patients were randomised in the study arms (166 standard care, 166 sham acupressure and 168 acupressure) and data were available for 361 participants for the primary outcome. The primary outcome analysis (nausea in cycle 1) revealed no statistically significant differences between the three arms, although the median nausea experience in patients using wristbands (both real and sham ones) was somewhat lower than that in the antiemetics only group (median nausea experience scores for the four cycles: standard care arm 1.43, 1.71, 1.14, 1.14; sham acupressure arm 0.57, 0.71, 0.71, 0.43; acupressure arm 1.00, 0.93, 0.43, 0). A gender effect was evident (p= 0.002), with women responding more favourably to the use of sham acupressure wristbands than men (odds ratio 0.35 for men and 2.02 for women in the sham acupressure group; 1.27 for men and 1.17 for women in the acupressure group). This suggests a placebo effect. No significant differences were detected in relation to vomiting outcomes, anxiety and quality of life. Some transient adverse effects were reported, including tightness in the area of the wristbands, feeling uncomfortable when wearing them and minor swelling in the wristband area (n= 6).There were no statistically significant cost differences associated with the use of real acupressure bands (£70.66 for the acupressure group, £111.13 for the standard care group and £161.92 for the sham acupressure group). In total, 26 subjects took part in qualitative interviews. The qualitative data suggested that participants perceived the wristbands (both real and sham) as effective and helpful in managing their nausea during chemotherapy. CONCLUSIONS: There were no statistically significant differences between the three arms in terms of nausea, vomiting and quality of life, although apparent resource use was less in both the real acupressure arm and the sham acupressure arm compared with standard care only; therefore; no clear conclusions can be drawn about the use of acupressure wristbands in the management of chemotherapy-related nausea and vomiting. However, the study provided encouraging evidence in relation to an improved nausea experience and some indications of possible cost savings to warrant further consideration of acupressure both in practice and in further clinical trials. TRIAL REGISTRATION: ISRCTN87604299. SOURCE OF FUNDING: This project was funded by the NIHR Health Technology Assessment programme and will be published in full in Health Technology Assessment; Vol. 17, No. 26. See the HTA programme website for further project information.

Palliative care for dementia--time to think again?

It is estimated that there are 35.6 million people with dementia worldwide and this is projected to increase to over 115 million by the year 2050. Dementia is a progressive neurodegenerative disease that significantly reduces survival. End-of-life care received by this group is often poor and does not equate to that offered in other life limiting illnesses. This review highlights results from a large UK study of informal carers of people with dementia to explore what are determinants of care for people with dementia and their family carers. New perspectives as to models of care for end-of-life care for patients with dementia are discussed together with how these may be implemented and delivered within wider community settings and contexts, where many people with dementia may be cared for in the future.

Chronic heart failure guidelines: do they adequately address patient need at the end-of-life?

INTRODUCTION: A number of international guidelines have been developed to support primary care clinicians improve the quality of care for patients with chronic heart failure at the end of life. The objective of this study was to undertake a systematic evaluation of such guidelines in relation to end-of-life care. METHODS: A systematic literature search of research databases and guideline clearing houses was undertaken. The selected guidelines were independently assessed by two researchers using the AGREE II quality criteria. A data-extraction framework was devised based on the holistic needs assessment tool of the Gold Standards Framework. The content of each guideline was then analysed using an approach similar to that used for thematic analysis. RESULTS: A total of 19 guidelines were included. Those guidelines with lower overall AGREE II scores covered fewer domains on the holistic needs assessment. Across all guidelines the lowest scoring domain was applicability and stakeholder involvement. Qualitative assessment showed that some guidelines adopt an unwavering disease orientated approach to assessing patient need. Guidance around continuity of care, out of hours care and after care was particularly poor in several guidelines. There was considerable heterogeneity in the evidence presented even amongst those guidelines that achieved high AGREE II scores. CONCLUSION: Combined quantitative and qualitative assessment demonstrates the importance of rigorous guideline development. Whilst the variation in evidence presented could be a result of methodological heterogeneity in the development of guidelines, it raises important questions about the processes by which evidence, information and knowledge become transformed into clinical guidelines.

Coping with and factors impacting upon the experience of lung cancer in patients and primary carers.

There is a paucity of research exploring patients' and their informal carers' experience of coping with and factors impacting on the lung cancer experience. This study aims to explore how patients and their informal carers cope with a diagnosis of lung cancer and describe the key factors that mediate distress in this population in order that they may be better supported in the future. This was a qualitative study employing semi-structured interviews and framework analysis to elicit the experience of 37 patients with lung cancer and 23 primary carers regarding their coping with and factors influencing patient/carer distress. The findings illustrate that participants used both emotional- and problem-focused coping strategies, including accepting the reality of lung cancer, adopting a positive attitude/fighting spirit, denial, avoidance and distraction and information seeking. Maintaining normality was also important. Key factors that mediate the lung cancer experience were also identified including hope, social network, prior experience of cancer and other chronic illnesses, the competing coping strategies of patients and their primary carers, the unpredictable nature of patients' behaviour, changing symptomatology, the perceived attitudes of health professionals and the impact of perceived delays in diagnosis. This study provides important insights into how patients with lung cancer and their primary carers might be better supported.

Revisiting depression in palliative care settings: the need to focus on clinical utility over validity.

OBJECTIVE: To review the literature on depression in palliative care patients to identify implications for development of clinical practice and individual patient care. METHOD: A qualitative review of depression prevalence studies in palliative care settings. We explore the utility of existing prevalence studies for clinical practice through testing two hypotheses: that high prevalence rates are associated with increased risk factors in study samples, and that poor methodological quality of the studies artefactually inflate prevalence estimates. Eighteen studies were identified in the search and included in this review. RESULTS: Risk factors may contribute to depression prevalence but through a complex interaction of factors making individual risk levels hard to determine. Measurement artefact cannot, alone, account for elevated levels of depression in this population but may contribute to imprecision. The importance of organic decline as a potential confounding variable is highlighted. CONCLUSION: Future research into the causes and prevalence of depression should adopt longitudinal approaches using large samples, and consider the impact of organic disorder as an important confounding factor. Clinical practice and care of individual patients may be better supported by development of a prognostic index considering the predictive power of depressive symptoms and risk factors on well-being.

Attitudes of preclinical medical students towards caring for chronically ill and dying patients: does palliative care teaching make a difference?

INTRODUCTION: Students entering medical school today will encounter an ageing population and a higher incidence of diseases affecting the elderly-for example, chronic respiratory and cardiac disease and malignancy. PURPOSE: This study was carried out to determine the attitudes of preclinical medical students towards the care of patients for whom a cure is not possible. METHODS: All students were invited to complete a 23 item questionnaire prior to initial teaching and again following the second teaching session in palliative care. RESULTS: Overall, 149 of the 186 students (80%) completed the pre-teaching questionnaire (59 males and 90 females; median age 20 years, range 19-27 years), and 66 students (35%) completed the post-teaching questionnaire. Attitudes towards chronically ill and dying patients were generally positive. It was found that increasing age was associated with a more positive view of caring for patients with chronic or terminal illness, a more positive view of listening to patients reminisce, and a more positive view of patients dying at home (p = 0.014). The only notable result was that after palliative care teaching students had a significantly more positive view of hospices. CONCLUSION: Caring for patients at the end of life can be one of the most rewarding aspects of being a doctor. This study suggests that the majority of medical students have a positive attitude towards patients with chronic incurable illness, and the trend for encouraging older students to enter medicine may be an influencing factor.

End-of-life decision making--have we got it right?

There are wide-spread misconceptions about palliative care. Various treatments used in palliative care have a potential to shorten, and at times even prolong life. However, such treatments are used with a view to enhance quality of life and/or death. Withholding and withdrawal of life-prolonging treatments are not equivalent to assisting death. It is important that patients who are approaching death are sensitively encouraged to make informed choices about such treatments. At the same time, there is no obligation on part of a health professional to provide a futile treatment. This personal view of two palliative care physicians aims to explore some of the difficulties surrounding end-of-life care.

An analysis of calls to an out-of-hours palliative care advice line.

An advice line was set up by a specialist palliative care hospice to improve the provision of out-of-hours palliative care to primary care teams, i.e. from 17.00 to 09.00 h during the week and at weekends and bank holidays. A senior member of nursing staff or medical staff answered all calls. During the first year of operation, 98 calls were received. The majority of callers were GPs (55%) and community nurses (34%). The advice requested was largely related to management of pain and the use of opiates, e.g. breakthrough dose of opiates and conversion of drugs to syringe drivers. Recommendations from this study include the provision of continuing education on management of terminally ill patients, and improved communication between primary care teams, providers of out-of-hours primary care and specialist palliative care teams.

Senior house officers' experience of a six month post in a hospice.

BACKGROUND: Hospices provide care for patients with a terminal prognosis--a very small number of hospices employ Senior House Officers. METHOD: A survey was carried out to determine the experiences of SHOs working in hospices and their perceptions of the learning opportunities available. Perceived stress was measured by a Visual Analogue scale and psychological distress by the GHQ 12. RESULTS: Of the 38 posts identified 23 SHOs (60%) responded and the majority had qualified during the last five years. Formal teaching was limited, but experiential teaching was very positively described. Many SHOs described their posts as stressful and cited staff conflict and caring for young patients as particularly stressful. Median stress scores as measured on the VAS was 55 mm (range 0-98 mm). Five respondents 22% scored for identifiable psychological distress on the GHQ 12. CONCLUSION: Conclusions include the need to acknowledge the important learning opportunities provided within hospices but also the need for consultant staff to be aware of the sources of stress for SHOs and their need for support.

An analysis of the validity of the Hospital Anxiety and Depression scale as a screening tool in patients with advanced metastatic cancer.

Depression is difficult to diagnose in the terminally ill patient. As a result, it frequently is not treated. This has can have an adverse effect on quality of life and make the palliation of physical symptoms more difficult. In an effort to improve the detection of depression, many palliative care teams are using the Hospital Anxiety and Depression (HAD) scale as a screening tool. The HAD was devised for use in general medical settings and has not been validated for use in palliative care patients. One hundred patients receiving palliative care with an estimated prognosis of 6 months or less were invited to complete the HAD and a semi-structured psychiatric interview, the Present State Examination. The depression and anxiety subscales of the HAD showed poor efficacy for screening when used alone. The optimum threshold was at a combined cut-off of 19, which had a sensitivity of 68% and specificity of 67%. The major construct of the HAD is anhedonia, which may be present at the end of life due to increasing physical illness and may not be pathognomic of a depressive illness in this population. We recommend, therefore, that if the HAD is used as a screening tool in palliative care, it should be as a combined scale, but low sensitivity and specificity may lead to poor efficacy as a screening tool.