scholarly journals MORECare research methods guidance development: Recommendations for ethical issues in palliative and end-of-life care research

2013 ◽  
Vol 27 (10) ◽  
pp. 908-917 ◽  
Author(s):  
Marjolein Gysels ◽  
Catherine J Evans ◽  
Penney Lewis ◽  
Peter Speck ◽  
Hamid Benalia ◽  
...  
Keyword(s):  
End Of Life ◽  
Research Methods ◽  
End Of Life Care ◽  
Ethical Issues ◽  
Life Care ◽  
Care Research ◽  
Guidance Development

The promise of big data for palliative and end-of-life care research

2021 ◽  
pp. 026921632110483
Author(s):  
Lucas Morin ◽  
Bregje D Onwuteaka-Philipsen
Keyword(s):  
Big Data ◽  
End Of Life ◽  
End Of Life Care ◽  
Life Care ◽  
Care Research

Situating requests for medical aid in dying within the broader context of end-of-life care: ethical considerations

2018 ◽  
Vol 45 (2) ◽  
pp. 106-111 ◽  
Author(s):  
Lori Seller ◽  
Marie-Ève Bouthillier ◽  
Veronique Fraser
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Ethical Issues ◽  
Retrospective Chart Review ◽  
Median Number ◽  
Life Care ◽  
Ethical Considerations ◽  
Term Care ◽  
Medical Aid ◽  
Aid In Dying

BackgroundMedical aid in dying (MAiD) was introduced in Quebec in 2015. Quebec clinical guidelines recommend that MAiD be approached as a last resort when other care options are insufficient; however, the law sets no such requirement. To date, little is known about when and how requests for MAiD are situated in the broader context of decision-making in end-of-life care; the timing of MAiD raises potential ethical issues.MethodsA retrospective chart review of all MAiD requests between December 2015 and June 2017 at two Quebec hospitals and one long-term care centre was conducted to explore the relationship between routine end-of-life care practices and the timing of MAiD requests.ResultsOf 80 patients requesting MAiD, 54% (43) received the intervention. The median number of days between the request for MAiD and the patient’s death was 6 days. The majority of palliative care consults (32%) came less than 7 days prior to the MAiD request and in another 25% of cases occurred the day of or after MAiD was requested. 35% of patients had no level of intervention form, or it was documented as 1 or 2 (prolongation of life remains a priority) at the time of the MAiD request and 19% were receiving life-prolonging interventions.InterpretationWe highlight ethical considerations relating to the timing of MAiD requests within the broader context of end-of-life care. Whether or not MAiD is conceptualised as morally distinct from other end-of-life options is likely to influence clinicians’ approach to requests for MAiD as well as the ethical importance of our findings. We suggest that in the wake of the 2015 legislation, requests for MAiD have not always appeared to come after an exploration of other options as professional practice guidelines recommend.

scholarly journals The Selection and Use of Outcome Measures in Palliative and End-of-Life Care Research: The MORECare International Consensus Workshop

2013 ◽  
Vol 46 (6) ◽  
pp. 925-937 ◽  
Author(s):  
Catherine J. Evans ◽  
Hamid Benalia ◽  
Nancy J. Preston ◽  
Gunn Grande ◽  
Marjolein Gysels ◽  
...  
Keyword(s):  
End Of Life ◽  
Outcome Measures ◽  
End Of Life Care ◽  
Life Care ◽  
International Consensus ◽  
Care Research

Ethical issues in palliative and end-of-life care

2018 ◽  
pp. 91-118
Author(s):  
Anne Halli-Tierney ◽  
Amy Albright ◽  
Deanna Dragan ◽  
Megan Lippe ◽  
Rebecca S. Allen
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Ethical Issues ◽  
Life Care

Palliative and end-of-life care in Egypt: overview and recommendations for improvement

2020 ◽  
Vol 26 (6) ◽  
pp. 284-291 ◽  
Author(s):  
Sameh Eltaybani ◽  
Ayumi Igarashi ◽  
Noriko Yamamoto-Mitani
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Cultural Context ◽  
Ethical Issues ◽  
Clear Picture ◽  
Life Care ◽  
Health And Illness ◽  
Care Situation ◽  
Country Specific ◽  
Made In

Background: The literature on the situation of palliative and end-of-life care in the Arab and Islamic world, including Egypt, is limited and does not present a clear picture of the cultural context. This report aims to portray the palliative and end-of-life care situation in Egypt, focusing on the nursing viewpoint. First, we describe health- and illness-related cultural, religious, and ethical issues. Second, we present an overview of the healthcare and nursing system in Egypt. Third, we discuss the situation of palliative and end-of-life care, highlighting the shortcomings of existing literature. Finally, we delineate country-specific recommendations to improve the palliative and end-of-life care situation at the level of policy, education, and research. Countries with similar healthcare, cultural, legal, religious, economic, or ethical contexts may benefit from the recommendations made in this study.

scholarly journals The bioethics of end-of-life care in Internal Medicine: decision making and setting of care

2013 ◽  
pp. 133-138
Author(s):  
Giancarlo Traisci
Keyword(s):  
Internal Medicine ◽  
Decision Making ◽  
End Of Life ◽  
End Of Life Care ◽  
Ethical Issues ◽  
Present Report ◽  
Clinical Care ◽  
Terminal Phase ◽  
Life Care ◽  
Physician Patient Relationship

Introduction In the field of Internal Medicine, the management of the terminal phase of an illness raises important issues involving clinical care, with particular reference to the physician-patient relationship. The present report describes the professional code of conduct relative to the assessments and decision making involved in end-of-life care. Materials and methods The article summarizes and discusses Italian common deontological low and the current positions of national and international experts in the field of end-of-life care. Results The ethical issues regarding euthanasia, withdrawal/withholding of health care, and medical treatment that uselessly prolongs the life of a terminal patient are defined and analyzed in conjunction with the outcomes suggested by the palliative medicine. Discussion Physicians caring for patients at the end of their lives must give consideration to bioethical approach.

scholarly journals The use of behavioural theories in end-of-life care research: A systematic review

2018 ◽  
Vol 32 (6) ◽  
pp. 1055-1077 ◽  
Author(s):  
Anne-Lore Scherrens ◽  
Kim Beernaert ◽  
Lenzo Robijn ◽  
Luc Deliens ◽  
Nele S Pauwels ◽  
...  
Keyword(s):  
Systematic Review ◽  
End Of Life ◽  
Transtheoretical Model ◽  
End Of Life Care ◽  
Reasoned Action ◽  
Data Extraction ◽  
Life Care ◽  
Care Research ◽  
Behavioural Theories

Background: It is necessary to understand behaviours that contribute to improvement in the quality of end-of-life care; use of behavioural theories allows identification of factors underlying end-of-life care behaviour, but little is known about the extent to which, and in what manner, these theories are used in an end-of-life care research context. Aim: To assess the number of end-of-life care studies that have used behavioural theories, which theories were used, to what extent main constructs were explored/measured and which behavioural outcomes were examined. Design: We conducted a systematic review. The protocol was registered on PROSPERO (CRD42016036009). Data sources: The MEDLINE (PubMed), PsycINFO, EMBASE, Web of Science and CINAHL databases were searched from inception to June 2017. We included studies aimed at understanding or changing end-of-life care behaviours and that explicitly referred to individual behavioural theories. Results: We screened 2231 records by title and abstract, retrieved 43 full-text articles and included 31 studies – 27 quantitative (of which four (quasi-)randomised controlled trials) and four qualitative – for data extraction. More than half used the Theory of Planned Behaviour (9), the Theory of Reasoned Action (4) or the Transtheoretical Model (8). In 9 of 31 studies, the theory was fully used, and 16 of the 31 studies focussed on behaviours in advance care planning. Conclusion: In end-of-life care research, the use of behavioural theories is limited. As many behaviours can determine the quality of care, their more extensive use may be warranted if we want to better understand and influence behaviours and improve end-of-life care.

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