Hospice care access inequalities: a systematic review and narrative synthesis.

BACKGROUND: Inequalities in access to hospice care is a source of considerable concern; white, middle-class, middle-aged patients with cancer have traditionally been over-represented in hospice populations. OBJECTIVE: To identify from the literature the demographic characteristics of those who access hospice care more often, focusing on: diagnosis, age, gender, marital status, ethnicity, geography and socioeconomic status. DESIGN: Systematic literature review and narrative synthesis. METHOD: Searches of Medline, PsycINFO, CINAHL, Web of Science, Assia and Embase databases from January 1987 to end September 2019 were conducted. Inclusion criteria were peer-reviewed studies of adult patients in the UK, Australia, New Zealand and Canada, receiving inpatient, day, outpatient and community hospice care. Of the 45 937 titles retrieved, 130 met the inclusion criteria. Narrative synthesis of extracted data was conducted. RESULTS: An extensive literature search demonstrates persistent inequalities in hospice care provision: patients without cancer, the oldest old, ethnic minorities and those living in rural or deprived areas are under-represented in hospice populations. The effect of gender and marital status is inconsistent. There is a limited literature concerning hospice service access for the LGBTQ+ community, homeless people and those living with HIV/AIDS, diabetes and cystic fibrosis. CONCLUSION: Barriers of prognostic uncertainty, institutional cultures, particular needs of certain groups and lack of public awareness of hospice services remain substantial challenges to the hospice movement in ensuring equitable access for all.

Planning for an uncertain future in progressive neurological disease: a qualitative study of patient and family decision-making with a focus on eating and drinking.

BACKGROUND: Dysphagia and other eating and drinking difficulties are common in progressive neurological diseases. Mealtimes can become a major source of difficulty and anxiety for patients and their families. Decisions about eating, drinking and care can become challenging as disease progresses, and the person in question loses the capacity to participate in decisions about their own care. We sought to investigate how patients and their family members make decisions about their future care as their condition deteriorates, with a particular focus on mealtimes, eating and drinking. METHODS: Longitudinal qualitative in-depth interviews were undertaken with patients and their family members (N = 29) across a range of disease groups, including: dementia, Parkinson's Disease, Huntington's Disease, Progressive Supranuclear Palsy, Motor Neurone Disease, Multiple Sclerosis. Patients had varying degrees of eating and drinking difficulties, and levels of decision-making capacity. Interviews were 'participant led' and undertaken in the patients' own homes or a place of their choosing. Follow-up interviews were three months to one year later depending upon disease trajectory. Interviews were audio recorded and analysed in NVivo using a Thematic Analysis approach. RESULTS: Twenty-nine participants were interviewed between 2015 and 2017. Two key themes emerged from the analysis: 1) Health Literacy: the extent to which patients and relatives appeared to know about the condition and its treatment. Patients and their family members varied in their ability to speak and communicate about their condition and prognosis. 2) Planning style: the extent to which participants appeared to value involvement in advance care-planning. Patients and their family members varied in the way in which they made decisions: some preferred to 'take each day as it comes', while others wished to plan extensively for the future. CONCLUSIONS: Issues with eating and drinking are often overlooked. Clinicians need to understand both the patient's level of health literacy and their style of planning before communicating with patients and their families about these sensitive issues.

A Review of the Efficacy and Role of the Card Sort Exercise in the Treatment of Bipolar Disorder.

The current card sort exercise described by Agius et al. in 2006 provides a tool for patients and their families to characterise the temporal pattern of occurrence of both stereotyped and idiosyncratic prodromal symptoms that serve as early warning signs predicting a relapse. This 'individual relapse signature' is highly specific for bipolar relapse, and aids identification of a relapse such that patients can be channeled into appropriate early intervention pathways. This review examines the role of the card sort exercise in the treatment of bipolar disorder, and evaluates the evidence for its efficacy. Few studies involve the card sort exercise, and those that do paired it with other early therapeutic interventions, such that it was difficult to assess the true contribution of the card sort exercise alone to outcome measures such as time-to-relapse or hospitalisation avoidance. We went back to first principles and evaluated the literature concerning various factors necessary for the card sort exercise to be useful. We concluded that there is good evidence that replicable relapse signatures exist as early warning signs for bipolar relapse, and that a certain subgroup of patients and their families can reliably use these signs to seek help and activate therapeutic interventions to abort the relapse episode. Early intervention is both possible and efficacious, which makes early identification of relapse yet more important. The card sort is of less use for depressive relapses, where prodromal symptoms are harder to pinpoint. The card sort exercise is useful in elucidating the relapse signature for each patient, which can then be used in psychoeducation or identification of future relapse episodes. However, more research is needed directly assessing the usefulness of the card sort exercise in helping patients and their families gain insight into the possibility of an imminent relapse.