Qualitative investigation of patient and carer experiences of everyday legal needs towards end of life.

BACKGROUND: Legal issues are common in chronic illness. These include matters of daily life, such as problems with employment, finances and housing, where rights or entitlements are prescribed by law. They also include planning ahead, for example, making a Lasting Power of Attorney. However, the nature, impact and management of legal needs in the context of end of life care are not known. This study investigated these from the perspectives of patients and carers. METHODS: Patients, with estimated prognosis 12 months or less, and carers were recruited from two sites: day services within an urban hospice and primary care in an area of deprivation in North-East England. Semi-structured interviews explored the nature and impact of legal issues, access to appropriate support and unmet needs. Thematic analysis of data was undertaken. RESULTS: Twenty-seven interviews were conducted with 14 patients (10/14 hospice) and 13 carers (7/13 hospice). Five were patient-carer dyads. All participants had experienced problems raising legal issues, which generated significant practical and psychological challenges. All had struggled to access support for social welfare legal issues, describing not knowing what, who, or when to ask for help. All participants accessed some support, however routes, timing and issues addressed were variable. Facilitators included serendipitous triggers and informed healthcare professionals who offered support directly, or signposted elsewhere. A range of professionals and organisations provided support; resolution of issues conferred substantial benefit. The majority of participants identified unresolved legal issues, predominantly related to planning ahead. The challenge of facing increased dependency and death proved a key barrier to this; informed and compassionate healthcare professionals were important enablers. CONCLUSION: Everyday legal needs are a common and distressing consequence of life-limiting illness, affecting patients and carers alike. This study identified inconsistent approaches but practical and psychological benefit when needs were met. Healthcare professionals were central to meeting social welfare legal needs and facilitating effective planning, with important roles as 'critical noticers', trusted intermediaries and compassionate communicators. Increased awareness, clearer pathways to support and closer service integration are needed to meet legal needs as a component of holistic care.

Legal Issues in Life-Limiting Illness: Can Cross-Agency, Interprofessional Education Support Integration of Care?

Legal issues are prevalent in life-limiting illness, relating to social welfare needs as well as delivery of legally compliant care. Yet the broad range of agencies delivering care is fragmented, risking unmet needs. This mixed-methods research explored the potential of cross-agency, interprofessional education to raise awareness and understanding of legal needs in this context and promote closer service integration. Four identical workshops, run in north-east England, brought together 99 participants from health, social, legal, advice, charitable, public and private sectors. Participants were overwhelmingly positive about the value of learning together with 97% wanting more sessions. Learning priorities included greater awareness of services and referral routes as well as areas of law relating to advance care planning and mental capacity. Interprofessional education, spanning the breadth of relevant agencies and supported by national strategy, was identified as a route to integrating services.

Meeting social welfare legal needs in end-of-life care: co-creation of a system-wide research partnership.

Background: Social welfare legal needs (matters of daily life, such as finances, housing and employment with legal rights, entitlements or protections) are prevalent towards end of life, creating significant difficulties for both patients and carers. Most people do not know where to go, although a range of services provide advice and support for addressing social welfare legal problems. Navigating this complex and fragmented system across health, social care and social welfare legal support is very challenging. Healthcare professionals are often the first contact for social welfare legal needs, although these are often overlooked and their impact on health and well-being unrecognised. Interprofessional learning can increase awareness of social welfare legal needs and build connections between service providers, offering a more holistic and cohesive multiagency response to the complex needs around end of life. The aim of the research was to co-create a robust foundation for cross-agency research investigating the impact of interprofessional learning on social welfare legal needs towards end of life in the North East England region. Objectives: Convene a research partnership group across academics, multiagency service providers and members of the public with lived experience. Consider and agree key issues for successful place-based multiagency research in this area. Co-create a complexity-appropriate research proposal with interprofessional learning as an intervention. Methods: A series of research activities was implemented to convene a multiagency partnership group and consider the key issues for successful place-based multiagency research. Data were collected from two online workshops, an optional reflective workbook, and a modified Delphi technique. Initial participants were selectively recruited from our established stakeholder and patient and public involvement groups. Increasing diversity of the partnership continued throughout the project, using contacts provided by group members. Representation of services supporting underserved groups was a priority. Results: All invited participants were recruited to the partnership, although contribution to research activities was variable. The partnership bridged knowledge gaps between services and united diverse perspectives, expertise and experience. A greater understanding of the barriers and opportunities for place-based multiagency working was generated, such as considering the importance of language in facilitating collaboration and responding to concerns around capacity. A non-hierarchical partnership was meaningful, with both personal and professional insights viewed as equally important. Facilitators to engagement with interprofessional learning were identified including the need for leadership endorsement. A non-traditional, mixed-method approach to interprofessional learning evaluation was favoured, with both qualitative and quantitative measures at three levels: patient and carer, professional learners and organisations. Important outcomes included raising awareness, connectedness and space to reflect. Limitations: The partnership group expanded throughout the course of the project. While this extended diversity, variable participation hindered depth of discussion, with participants engaging at different points and with different understanding levels of the project. Supplementary materials provided some mitigation. Capacity and funding constraints limited engagement for some participants. Conclusions: Convening a multiagency partnership generated insights into the benefits, barriers and facilitators to research co-design and potential measures of success of interprofessional learning. Future work: Learning from this project has informed a complexity-appropriate research proposal to evaluate the impact of interprofessional learning as an intervention across different stakeholders. Funding: This article presents independent research funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme as award number NIHR135276.

Social welfare legal issues, such as unsuitable housing, job difficulties and money concerns, are common in the last 12 months of a person's life and they affect carers too. Getting the right help can be difficult as it is hard to know where to go. Organisations and services often work separately from each other. Healthcare professionals are often the first contact for social welfare legal needs, but they may not be able to provide the required support. Interprofessional learning brings professionals together to learn from each other and connect services better. We think this will make it easier for people to get the help they need when the same is required. We set up a group of professionals and four people with personal experience. This partnership group started with people and organisations we knew already but more joined during the project. By the end, 37 different services, representing a range of health, advice and community services, had joined the research group. All services had experience of social welfare legal issues in the last 12 months of life. The group discussed running research together and how interprofessional learning could be tested in our next research project. Research activities were: two online meetings to discuss key questions a workbook which gave time to think about the questions we were asking a survey which asked participants their views about measuring success of interprofessional learning. Group members brought a variety of experiences and opinions. Some had difficulty taking part, mainly because of time. We learnt that professional and personal experiences are as important as each other and that it is important to avoid jargon. Testing if interprofessional learning makes a difference needs to look at people using services, professionals and organisations. We have written a funding application, based on what we have learnt in this project.

Legal needs of adults with life-limiting illness: what are they and how are they managed? A qualitative multiagency stakeholder exercise.

Objective: Little is known about legal needs in the context of life-limiting illness, particularly the need for advice concerning legal arrangements, rights and entitlements. This UK-based multiagency stakeholder engagement exercise scoped legal needs associated with life-limiting illness and identified support structures, gaps and opportunities for practice improvement. Method and analysis: Snowball sampling generated a stakeholder group from a wide range of regional and national organisations involved in care of people with life-limiting illness, spanning health, social care, legal support, advice, charities, prison services as well as patient and carer representatives. A coproduced survey of three open questions generated qualitative data, interpreted by thematic analysis. Results: Stakeholders reported a broad spectrum of problems and needs raising legal issues, with no consistency of definition. A classification is proposed, identifying matters concerning rights and entitlements of patients/carers in day-to-day life and decisions around care, both immediate and in the future, as well as professional responsibilities in delivering personalised care. The support structures identified were predominantly online literature, although there was some availability of remote and face-to-face services. Limited awareness of the issues, variable service configuration, fragmentation of care and inequitable access were identified as barriers to support. Stakeholders recognised the need for education and closer multiagency working. Conclusions: 'Legal needs' incorporate wide-ranging issues, but there is inconsistency in perceptions among stakeholders. Practice is variable, risking unmet need. Opportunities for improvement include more formal integration of social welfare legal services in the health context, generating clearer pathways for assessment and management.

A questionnaire study of the approach to the anorexia-cachexia syndrome in patients with cancer by staff in a district general hospital.

GOALS OF WORK: This questionnaire study was designed to investigate understanding, assessment and management of cancer-related anorexia-cachexia syndrome (ACS) amongst hospital staff. METHODS: Qualified nurses and doctors on general medical and surgical wards within a district general hospital were asked to complete a questionnaire enquiring about understanding of the term cachexia, routine assessment of commonly associated symptoms and approaches to management of three commonly associated symptoms (poor appetite, early satiety and dry mouth). MAIN RESULTS: One hundred seventeen questionnaires were distributed with 100 returned (86% response rate). Cachexia was most frequently described as weight loss (79%) and anorexia (49%). Some symptoms (including altered appetite, constipation, nausea and vomiting) were routinely assessed during admission or review of these patients. Some common symptoms (including mouth problems, early satiety) were much less likely to be enquired about. Management of the three key symptoms demonstrated a range of approaches with little consistency. Early satiety was particularly poorly managed, with 29% of staff being unable to recognise or treat it. CONCLUSIONS: The study highlights the variable understanding of ACS and the lack of standardised assessment and management tools amongst staff in an acute hospital setting. This is likely to lead to inconsistent, and perhaps inadequate, care of patients with palliative care needs. Greater awareness and basic pathways of care may help to improve the experience of ACS for patients with cancer.

Quantifying the impact of standardized assessment and symptom management tools on symptoms associated with cancer-induced anorexia cachexia syndrome.

The objective of this study was to quantify the impact of standardized assessment and management tools on patient symptom scores in cancer-induced anorexia cachexia syndrome (ACS) using a within-group study design. Baseline assessments included the Patient Generated Subjective Global Assessment (PG-SGA) tool and an amended Symptoms and Concerns Checklist (SCC). Symptom management strategies, written for this project, were instigated. Follow-up SCC scores were collected at 2 and 4 weeks. Forty out of 79 patients referred were recruited; 29/79 (36.7%) were too unwell or had died prior to consent. At baseline, the PG-SGA tool revealed 250 active symptoms associated with ACS. Total PG-SGA score was above 9 for all patients. Predominant interventions involved simple dietary advice and prescription of artificial saliva, mouthwash and prokinetic antiemetics. Median total SCC score improved sequentially from 11 at baseline, to 7 and 4 at first and second review, respectively (visit 1 to 2, p = 0.001; visit 1 to 3, p < 0.001; and visit 2 to 3, p = 0.02). We conclude that patients with ACS are recognised late in their disease and have a considerable burden of active symptoms. A structured approach to assessment and management has a significant impact on symptom burden.

Audit of symptoms and prescribing in patients with the anorexia-cachexia syndrome.

OBJECTIVE: To audit the profile of symptoms related to the anorexia-cachexia syndrome (ACS) in patients with cancer, and current prescribed medication. SETTING: Cancer patients within both primary and secondary care in north Durham. METHOD: Patients with cancer and symptoms of ACS were referred to the specialist pharmacist. Symptom profile was assessed using the Patient Generated Subjective Global Assessment (PG-SGA) tool and current drug history was recorded. Changes to prescribed medication recommended by the specialist pharmacist were communicated to the responsible clinician. Management strategies were standardised according to the evidence base or best practice in the absence of evidence. MAIN OUTCOME MEASURE: Quantified symptom burden and analysis of patterns of prescribing in this cohort of patients. RESULTS: Twenty-three out of thirty-two patients referred were well enough for assessment. Hundred and nineteen active symptoms were identified by the PG-SGA tool in those 23 patients. Patients were prescribed a median of eight drugs, excluding nutritional supplements. Side effects of prescribed medication may have been contributory factors to dry mouth and constipation, reported by 21 (91%) and 12 (52%) patients respectively. Many active symptoms were not managed by prescribed medication, most commonly dry mouth, anorexia and early satiety. Eighty-nine recommended changes to prescribed medication were made by the specialist pharmacist, most frequently treatment of dry mouth and prescription of prokinetic antiemetics. CONCLUSION: ACS in patients with cancer is associated with a significant number of active symptoms, many unmanaged by prescription medication. The potential for standardised assessment and management is raised.