The Catch-22 of Neuroimaging, Disorders of Consciousness, and End-of-Life Decisions

2017 ◽  
Vol 74 (5) ◽  
pp. 501 ◽  
Author(s):  
Emanuel Cabral ◽  
Judy Illes
Keyword(s):  
End Of Life ◽  
Disorders Of Consciousness ◽  
End Of Life Decisions ◽  
Catch 22 ◽  
Life Decisions

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

BMC Neurology ◽  
2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Manju Sharma-Virk ◽  
Willemijn S. van Erp ◽  
Jan C. M. Lavrijsen ◽  
Raymond T. C. M. Koopmans
Keyword(s):  
End Of Life ◽  
Healthcare Professionals ◽  
Disorders Of Consciousness ◽  
Post Injury ◽  
End Of Life Decisions ◽  
Rehabilitation Outcomes ◽  
Chain Of Care ◽  
Life Decisions ◽  
The Impact

Abstract 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.

End-Of-Life Decisions in Chronic Disorders of Consciousness: Sacrality and Dignity as Factors

Neuroethics ◽  
2016 ◽  
Vol 9 (1) ◽  
pp. 85-102
Author(s):  
Rocco Salvatore Calabrò ◽  
Antonino Naro ◽  
Rosaria De Luca ◽  
Margherita Russo ◽  
Lory Caccamo ◽  
...  
Keyword(s):  
End Of Life ◽  
Disorders Of Consciousness ◽  
End Of Life Decisions ◽  
Chronic Disorders ◽  
Life Decisions ◽  
Chronic Disorders Of Consciousness

scholarly journals Attitudes of the Equestrian Public towards Equine End-of-Life Decisions

Animals ◽  
2021 ◽  
Vol 11 (6) ◽  
pp. 1776
Author(s):  
Catherine Bell ◽  
Suzanne Rogers
Keyword(s):  
End Of Life ◽  
Affective State ◽  
Principal Component ◽  
Peer Pressure ◽  
Negative Attitudes ◽  
End Of Life Decisions ◽  
Life Decisions ◽  
End Of Life Decision ◽  
Physical Reasons ◽  
Horse Owners

A key welfare concern for the equine population in the U.K. has been identified as delayed death, leading to prolonged suffering of horses. Reasons why some horse owners fail to have their horses euthanised include financial cost, emotional attachment, peer pressure, negative attitudes towards killing and poor recognition of behavioural indicators of equine pain and stress. The Five Freedoms framework of welfare was used to build a Likert-style survey to investigate the factors underlying attitudes of horse owners towards welfare measures in an end-of-life decision. Participants were asked to respond to hypothetical welfare scenarios and to give details of any horses they had had euthanised. The survey was conducted predominantly via equestrian Facebook groups and obtained 160 participant responses. Reliability of the scale was acceptable, with Cronbach’s α=0.89. Principal Component Analysis was used to load the hypothetical scenarios onto seven factors containing 62.2% of the variance. The first four factors could be categorized according to “Ethology-informed Management”, “Traditional Horse Management”, “Emotional Issues” and “Physical Issues”. Participants were more likely to consider euthanasia for physical issues, compared with issues relating to affective state and/or ethology, although it was not clear whether this was due to disregard for welfare issues relating to mental health or failure to recognise them as such. A large number of responses stated that the scenario had no bearing on whether a horse should be euthanised, again suggesting a lack of recognition of welfare issues and their implications. When asked to state their reasons for euthanising their horses, participants cited almost exclusively physical reasons, with the exception of those citing dangerous behaviour. Only a small number of responses also included consideration of affective and/or ethological factors, suggesting that welfare issues concerning affective state and/or behaviour are at risk of omission from end-of-life decisions.

Moral distress in end-of-life decisions: A qualitative study of intensive care physicians

2021 ◽  
Vol 62 ◽  
pp. 185-189
Author(s):  
Una St Ledger ◽  
Joanne Reid ◽  
Ann Begley ◽  
Peter Dodek ◽  
Daniel F. McAuley ◽  
...  
Keyword(s):  
Intensive Care ◽  
Qualitative Study ◽  
End Of Life ◽  
Moral Distress ◽  
End Of Life Decisions ◽  
Life Decisions

scholarly journals European Resuscitation Council Guidelines 2021: Ethics of resuscitation and end of life decisions

Resuscitation ◽  
2021 ◽  
Author(s):  
Spyros D. Mentzelopoulos ◽  
Keith Couper ◽  
Patrick Van de Voorde ◽  
Patrick Druwé ◽  
Marieke Blom ◽  
...  
Keyword(s):  
End Of Life ◽  
European Resuscitation Council ◽  
End Of Life Decisions ◽  
Life Decisions
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