BackgroundDysphagia 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.MethodsLongitudinal 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.ConclusionsIssues 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.

BackgroundInequalities 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.ObjectiveTo 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.DesignSystematic literature review and narrative synthesis.MethodSearches 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.ResultsAn 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.ConclusionBarriers 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.

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An 11-year-old girl presented to the Paediatric department with a non-blanching rash, which was vasculitic in appearance and tender to touch, but not pruritic. The typical feature was hyperaesthesia, starting on her left forearm. The child was well and afebrile, with no history of: musculoskeletal problems; red eyes; mouth ulcers; trauma or insect bites. The girl lived with her parents and two siblings, and had neither a past medical history nor family history of vasculitis.At initial presentation, the paediatrician corroborated the GP’s working diagnosis of shingles with neuropathic pain; the patient was given an extended course of acyclovir, plus amitriptyline. During follow up, the patient reported improved pain, whilst the rash had completely subsided.However, two weeks later, the girl returned with a similar painful rash. Upon dermatological review, she received IV antibiotics for suspected chronic meningococcemia. Over the next eight months, the rash waxed and waned, and often healed completely.She received, at various stages, diagnoses of: shingles with neuropathic pain; chronic meningococcemia; segmented pigmented dermatosis; cutaneous vasculitis; atypical Henoch-Schönlein purpura; and potential urticarial vasculitis.Altogether, this patient had 13 paediatric outpatient appointments, one admission, two reviews in the acute paediatric unit and two tertiary dermatology referrals.She had 29 blood tests, and numerous urine dipsticks. Her full blood count, coagulation screen, inflammatory markers and autoimmune screen were normal.She received three courses of acyclovir, one course of antibiotics, regular analgesia, amitriptyline and six weeks of prednisolone.She also had two skin biopsies, which reported an element of purpura without any vasculitis.Given purpura without vasculitis, the revelation that our patient was a teenager going through a stressful period at school caused us to consider and discuss an exogenous cause (deliberate self-infliction). The rash’s subsequent complete resolution within a few months strengthens this hypothesis.Clinicians frequently care for children with complex or unconventional presentations. In an era of defensive medicine, we request a plethora of investigations and specialist opinions before diagnoses like self-inflicted injuries are considered. This case raises ethical questions about how far we should go in our pursuit of an intellectually satisfying definitive diagnosis.