ORCID Profile
0000-0002-6777-8816
Current Organisation
University of Oxford
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Publisher: Springer Science and Business Media LLC
Date: 29-10-2018
Publisher: Wiley
Date: 04-2017
DOI: 10.1111/IMJ.13389
Abstract: The routine implementation of Advance Care Planning (ACP) is now a prominent feature of policy directed at improving end of life care in Australia. However, while complex ACP interventions may modestly reduce medical care at the end of life and enable more people to die at home or outside of acute hospital settings, existing legal, organisational, cultural and conceptual barriers limit the implementation and utility of ACP. We suggest that meaningful improvements in end of life care will not result from the institutionalisation of ACP but from more significant changes to the design and delivery of care.
Publisher: Elsevier BV
Date: 02-2018
DOI: 10.1016/J.JPAINSYMMAN.2017.09.008
Abstract: Research has begun to focus on whether Advance Care Planning (ACP) has the capacity to influence care, and to examine whether ACP can be effective in meeting patients' wishes at the end of their lives. Little attention has been paid, however, to the validity and clinical relevance of existing measures. A search of Medline and CINHAL identified ACP studies measuring concordance between end-of-life (EoL) preferences and the care received. Databases were searched from 2000 to August 2016. We developed a checklist to evaluate the quality of included studies. Data were collected on the proportion of patients who received concordant care, extracted from manuscript tables or calculated from the text. Of 2941 papers initially identified, nine eligible studies were included. Proportions of patients who received concordant care varied from 14% to 98%. Studies were heterogeneous and methodologically poor, with limited attention paid to bias/external validity. Studies varied with regards to design of measures, the meaning of relevant terms like "preference" "EoL care" and "concordance," and the completeness of reported data. Methodological variations and weaknesses compromise the validity of study results, and prevent meaningful comparisons between studies or synthesis of the results. Effectively evaluating whether ACP interventions enhance a patient's capacity to receive the care they want requires harmonization of research. This demands standardization of methods across studies, validating of instruments, and consensus based on a consistent conceptual framework regarding what constitutes a meaningful outcome measure.
Publisher: Mark Allen Group
Date: 02-12-2017
DOI: 10.12968/IJPN.2017.23.12.596
Abstract: Advance care planning (ACP) is defined in a variety of ways, although it is widely understood as a process undertaken by patients, when they have capacity, to define and communicate their treatment preferences for future care. Few studies have explored the meaning and importance patients place on their ability to participate in directing their medical care. This study aimed to explore how cancer patients and their family members value autonomy at the end of life (EoL) and understand how this may impact on the way they develop and act on EoL decisions and planning. Data were collected through in-depth semi-structured interviews with patients and family members of people with cancer. Participants were recruited from metropolitan cancer centres in Sydney, Australia. Interviews were analysed using thematic analysis. Findings from 11 participant interviews (five patients with cancer and six family members) were organised into four themes: ‘the threat of death and cancer’ ‘patients seek trust and safety at the end of life’ ‘doctors are human and the healthcare system has limitations’ and ‘the role of ACP’. Participants experienced cancer and death as a ‘threat’, to self and others and as something ‘uncontrollable’. ACP was seen to have the potential to enhance EoL care by contributing to decreasing uncertainty, enhancing comfort, helping to achieve ‘the small things’, and in helping the family ‘know what to do’. However, participants were, in general, distrustful of documentation and cognisant of uncertainty around medical outcomes and the legal limitations of their capacity to influence care. These findings suggest that models of ACP which are constructed around patients' ‘rights’ to determine what happens to their bodies may do little to enhance the quality of EoL care, as patients value veracity, trust and comfort at the EoL more than autonomy. Quality EoL care should focus on paying increased attention to the relational and social aspects of care.
Publisher: Springer Science and Business Media LLC
Date: 07-03-2022
DOI: 10.1038/S41431-022-01058-1
Abstract: There is evidence to suggest that host genomic factors may account for disease response variability in COVID-19 infection. In this paper, we consider if and how host genomics should influence decisions about vaccine allocation. Three potential host genetic factors are explored: vulnerability to infection, resistance to infection, and increased infectivity. We argue for the prioritisation of the genetically vulnerable in vaccination schemes, and evaluate the potential for ethical de-prioritisation of in iduals with genetic markers for resistance. Lastly, we discuss ethical prioritisation of in iduals with genetic markers for increased infectivity (those more likely to spread COVID-19).
Publisher: Free Neuropathology
Date: 2020
Publisher: Springer Science and Business Media LLC
Date: 28-08-2017
Publisher: F1000 Research Ltd
Date: 03-06-2020
DOI: 10.12688/WELLCOMEOPENRES.15806.1
Abstract: Background : Going forward, the routine implementation of genomic surveillance activities and outbreak investigation is to be expected. We sought to systematically identify the emerging ethical challenges and to systematically assess the gaps in ethical frameworks or thinking and identify where further work is needed to solve practical challenges. Methods : We systematically searched indexed academic literature from PubMed, Google Scholar, and Web of Science from 2000 to April 2019 for peer-reviewed articles that substantively engaged in discussion of ethical issues in the use of pathogen genome sequencing technologies for diagnostic, surveillance and outbreak investigation. Results : 28 articles were identified nine United States, five United Kingdom, five The Netherlands, three Canada, two Switzerland, one Australia, two South Africa, and one Italy. Eight articles were specifically about the use of sequencing in HIV. Eleven were not specific to a particular disease. Results were organized into four themes: tensions between public and private interests difficulties with translation from research to clinical and public health practice the importance of community trust and support equity and global partnerships and the importance of context. Conclusion : While pathogen sequencing has the potential to be transformative for public health, there are a number of key ethical issues that must be addressed, particularly around the conditions of use for pathogen sequence data. Ethical standards should be informed by public values, and further empirical work investigating stakeholders’ views are required. Development in the field should also be under-pinned by a strong commitment to values of justice, in particular global health equity.
Publisher: BMJ
Date: 09-2015
Publisher: BMJ
Date: 12-2016
Publisher: Wiley
Date: 20-09-2015
DOI: 10.1002/PON.3926
Abstract: Patients with advanced cancer may benefit from end of life (EOL) planning, but there is evidence that their willingness and desire to engage in advance care planning (ACP) varies. The reasons for this remain poorly understood. Previous reviews on ACP most commonly report outcome measures related to medical interventions and type of care. Synthesis of the literature, which aims to illuminate the salient characteristics of ACP and investigates the psychological and social features of preparation for the EOL, is required. We searched Medline, EMBASE, PsychINFO, CINAHL, and the Cochrane Central Register of Controlled Trials for studies on perceptions or experiences regarding ACP of adults with cancer, family, friends, or professionals caring for this group. Databases were searched from earliest records to 19 November 2014. A thematic analysis of the literature generated conceptual themes. Of the 2483 studies identified, 40 were eligible for inclusion. Studies addressed the relational nature of ACP, fear surrounding ACP, the conceptual complexity of autonomy, and the influence of institutional culture and previous healthcare experiences on ACP. The complex social and emotional environments within which EOL planning is initiated and actioned are not sufficiently embedded within standardized ACP. The notion that ACP is concerned principally with the 'right' to self-determination through control over treatment choices at the EOL may misrepresent the way that ACP actually occurs in cancer care and ultimately conflict with the deeper concerns and needs of patients, who experience ACP as relational, emotional, and social.
Publisher: Springer Science and Business Media LLC
Date: 15-03-2019
Publisher: BMJ
Date: 15-10-2020
DOI: 10.1136/MEDETHICS-2020-106266
Abstract: Doctors form an essential part of an effective response to the COVID-19 pandemic. We argue they have a duty to participate in pandemic response due to their special skills, but these skills vary between different doctors, and their duties are constrained by other competing rights. We conclude that while doctors should be encouraged to meet the demand for medical aid in the pandemic, those who make the sacrifices and increased efforts are owed reciprocal obligations in return. When reciprocal obligations are not met, doctors are further justified in opting out of specific tasks, as long as this is proportionate to the unmet obligation.
Publisher: BMJ
Date: 09-2015
Location: United Kingdom of Great Britain and Northern Ireland
Location: United Kingdom of Great Britain and Northern Ireland
Location: United Kingdom of Great Britain and Northern Ireland
No related grants have been discovered for Stephanie Johnson.