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.
BackgroundGPs have a central role in decisions about prescribing anticipatory medications to help control symptoms at the end of life. Little is known about GPs’ decision-making processes in prescribing anticipatory medications, how they discuss this with patients and families, or the subsequent use of prescribed drugs.AimTo explore GPs’ decision-making processes in the prescribing and use of anticipatory medications for patients at the end of life.Design and settingA qualitative interview study with GPs working in one English county.MethodSemi-structured interviews were conducted with a purposive sample of 13 GPs. Interview transcripts were analysed inductively using thematic analysis.ResultsThree themes were constructed from the data: something we can do, getting the timing right, and delegating care while retaining responsibility. Anticipatory medications were a tangible intervention GPs felt they could offer patients approaching death (something we can do). The prescribing of anticipatory medications was recognised as a harbinger of death for patients and their families. Nevertheless, GPs preferred to discuss and prescribe anticipatory medications weeks before death was expected whenever possible (getting the timing right). After prescribing medications, GPs relied on nurses to assess when to administer drugs and keep them updated about their use (delegating care while retaining responsibility).ConclusionGPs view anticipatory medications as key to symptom management for patients at the end of life. The drugs are often presented as a clinical recommendation to ensure patients and families accept the prescription. GPs need regular access to nurses and rely on their skills to administer drugs appropriately. Patients’ and families’ experiences of anticipatory medications, and their preferences for involvement in decision making, warrant urgent investigation.
A wave of scholarship about legal consciousness has demonstrated how law shapes the everyday lives of ordinary people (
Arising in the late 1960s and early 1970s—in conjunction with the development of sociology of law and the Law and Society Association—gap studies dominated much of sociolegal scholarship for a time, providing multiple examples of the ways in which law on the books is inconsistent with law in action. These gaps, in turn, spurred calls for legal reform. By the 1980s, however, gap studies came in for criticism, not only for the presumption that law was purposively rational but also for scholars' beliefs that they could identify law's aims. To some, the findings were naïve or undertheorized. Nonetheless, gap studies have illuminated many legal practices and have helped to identify pathways by which law may have an impact. Even as sociolegal scholarship has become increasingly decentered from law, one still sees the tendrils of gap studies in research exploring discrepancies between expectations and actuality in law and legality.
Using a regression model of pooled time series data from the 50 states in the United States in the period 1990 to 2001, we look at the political, demographic, and social movement factors that provide the impetus for the enactment of state laws that proscribe the celebration of marriages involving lesbian and gay couples. In doing so, we consider the validity of existing indicators that have been previously associated with the introduction of policies concerning sexual orientation at the state and local level, as well as introduce new factors that might apply uniquely to the area of same‐sex marriage laws.
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