Current controversies and irresolvable disagreement: the case of Vincent Lambert and the role of ‘dissensus’

Wilkinson, Dominic; Savulescu, Julian

doi:10.1136/medethics-2019-105622

Cited by 15 publications

(18 citation statements)

References 24 publications

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“…Therefore, Englaro's case is as a watershed event in the Italian discourse. From 2016 onwards, the level of discourse grew again correlated with the parliamentarian debate about the Living‐Will Law (approved in December 2017), and discussions of the British and French cases of Alfie Evans and Vincent Lambert (Ciliberti et al., 2018; Wilkinson & Savulescu, 2019).…”

Section: Resultsmentioning

confidence: 99%

Understanding a liminal condition: Comparing emerging representations of the “vegetative state”

Zulato

Montali

Bauer

2021

Euro J Social Psych

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Our research explored the social representations of the 'vegetative state' across different cultural (India, Italy, and the UK) and social milieus (left-leaning, right-leaning, and religious/tabloid newspapers). The aim was to discover how public discourse engages liminality between life and death. Qualitative and quantitative text analyses were conducted on news headlines and full-texts from British (n = 300), Indian (n = 300), and Italian (n = 300) newspapers published between January 1990 and June 2019. Our study shows three results: (a) the vegetative state is a potentially global issue that remains discussed with local timing and characteristics; (b) it is commonly represented in eight frames of different resonance across cultural milieus; (c) the news flows are organised on different dimensions (quality, political, and ideological). Results shed light on how liminality is discursively managed by the interplay of cultural resources and social positionings. In particular, this suggests a hitherto unrecognised function of the objectification process: personification as position-taking.

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Section: Resultsmentioning

confidence: 99%

Understanding a liminal condition: Comparing emerging representations of the “vegetative state”

Zulato

Montali

Bauer

2021

Euro J Social Psych

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“…Besides the aforementioned issues in a recovery-targeted treatment, controversies regarding EOLD and the process of dying in PDOC attract frequent worldwide media attention [34][35][36][37]. The views on (dis) continuation of life sustaining treatment (LST) vary widely in different cultural and geographical settings [12].…”

Section: End-of-life Decisions Ethical Dilemmas and Dying In Pdocmentioning

confidence: 99%

Intensive neurorehabilitation for patients with prolonged disorders of consciousness: protocol of a mixed-methods study focusing on outcomes, ethics and impact

et al. 2021

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Background Prolonged disorders of consciousness (PDOC) are amongst the severest sequelae of acquired brain injury. Evidence regarding epidemiology and rehabilitation outcomes is scarce. These knowledge gaps and psychological distress in families of PDOC patients may complicate clinical decision-making. The complex PDOC care and associated moral dilemmas result in high workload in healthcare professionals. Since 2019, all PDOC patients in the Netherlands have access to intensive neurorehabilitation up to 2 years post-injury provided by one rehabilitation center and four specialized nursing homes. Systematic monitoring of quantitative rehabilitation data within this novel chain of care is done in a study called DOCTOR. The optimization of tailored PDOC care, however, demands a better understanding of the impact of PDOC on patients, their families and healthcare professionals and their views on rehabilitation outcomes, end-of-life decisions and quality of dying. The True Outcomes of PDOC (TOPDOC) study aims to gain insight in the qualitative outcomes of PDOC rehabilitation and impact of PDOC on patients, their families and healthcare professionals. Methods Nationwide multicenter prospective cohort study in the settings of early and prolonged intensive neurorehabilitation with a two-year follow-up period, involving three study populations: PDOC patients > 16 years, patients’ family members and healthcare professionals involved in PDOC care. Families’ and healthcare professionals’ views on quality of rehabilitation outcomes, end-of-life decisions and dying will be qualitatively assessed using comprehensive questionnaires and in-depth interviews. Ethical dilemmas will be explored by studying moral deliberations. The impact of providing care to PDOC patients on healthcare professionals will be studied in focus groups. Discussion To our knowledge, this is the first nationwide study exploring quality of outcomes, end-of-life decisions and dying in PDOC patients and the impact of PDOC in a novel chain of care spanning the first 24 months post-injury in specialized rehabilitation and nursing home settings. Newly acquired knowledge in TOPDOC concerning quality of outcomes in PDOC rehabilitation, ethical aspects and the impact of PDOC will enrich quantitative epidemiological knowledge and outcomes arising from DOCTOR. Together, these projects will contribute to the optimization of centralized PDOC care providing support to PDOC patients, families and healthcare professionals.

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“…The NHMRC Guidelines are also potentially problematic because they suggest resources are part of the definition of "overly burdensome treatment." While resources could be a factor in decision-making for persons with disorders of consciousness, this should be treated as a separate and distinct rationale from the patient's interests (Wilkinson and Savulescu 2019). This part of the NHMRC Guidelines blurs this line.…”

Section: Lack Of Practical Guidance About Resource Allocationmentioning

confidence: 99%

“…In response to recent high-profile disputes, clinicians and ethicists have argued that limited medical resources are relevant to decisions to withhold or withdraw lifesustaining treatment (Truog 2017;Wilkinson and Savulescu 2019), a view shared by some members of the public (Brick et al 2019). Although most doctorinitiated decisions to limit life-sustaining treatment are based on the rationale that ongoing active treatment is "futile" or "non-beneficial" (and therefore not in the patient's best interests), distributive justice affords a distinct ethical justification for non-treatment, particularly in publicly funded healthcare systems (Truog 2017;Wilkinson and Savulescu 2019). Interventions at the end of life that provide little or no benefit consume scarce healthcare resources, which could be used more efficiently by others (Huynh et al 2014;Carter et al 2017).…”

Section: Introductionmentioning

confidence: 99%

Balancing Patient and Societal Interests in Decisions About Potentially Life-Sustaining Treatment

White

Willmott

2020

Bioethical Inquiry

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Background This paper investigates the content of Australian policies that address withholding or withdrawing life-sustaining treatment to analyse the guidance they provide to doctors about the allocation of resources. Methods All publicly available non-institutional policies on withholding and withdrawing life-sustaining treatment were identified, including codes of conduct and government and professional organization guidelines. The policies that referred to resource allocation were isolated and analysed using qualitative thematic analysis. Eight Australian policies addressed both withholding and withdrawing life-sustaining treatment and resource allocation. Results Four resource-related themes were identified: (1) doctors' ethical duties to consider resource allocation; (2) balancing ethical obligations to patient and society; (3) fair process and transparent resource allocation; and (4) legal guidance on distributive justice as a rationale to limit life-sustaining treatment. Conclusion Of the policies that addressed resource allocation, this review found broad agreement about the existence of doctors' duties to consider the stewardship of scarce resources in decision-making. However, there was disparity in the guidance about how to reconcile competing duties to patient and society. There is a need to better address the difficult and confronting issue of the role of scarce resources in decisions about lifesustaining treatment.

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Current controversies and irresolvable disagreement: the case of Vincent Lambert and the role of ‘dissensus’

Cited by 15 publications

References 24 publications

Understanding a liminal condition: Comparing emerging representations of the “vegetative state”

Understanding a liminal condition: Comparing emerging representations of the “vegetative state”

Intensive neurorehabilitation for patients with prolonged disorders of consciousness: protocol of a mixed-methods study focusing on outcomes, ethics and impact

Balancing Patient and Societal Interests in Decisions About Potentially Life-Sustaining Treatment

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