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.

A qualitative study of physicians’ conscientious objections to medical aid in dying

2019 ◽  
Vol 33 (9) ◽  
pp. 1212-1220 ◽  
Author(s):  
Marie-Eve Bouthillier ◽  
Lucie Opatrny
Keyword(s):  
Qualitative Study ◽  
End Of Life ◽  
End Of Life Care ◽  
Descriptive Analysis ◽  
Life Care ◽  
Structured Interviews ◽  
Emotional Burden ◽  
Medical Aid ◽  
Aid In Dying ◽  
Support Policy

Background: Under Quebec’s Act respecting end-of-life care, physicians may refuse to provide medical aid in dying because of personal convictions, also called conscientious objections. Before legalisation, the results of our survey showed that the majority of physicians were in favour of medical aid in dying (76%), but one-third (28%) were not prepared to perform it. After 18 months of legalisation, physicians were refusing far more frequently than the pre-Act survey had anticipated. Aim: To explore the conscientious objections stated by physicians so as to understand why some of them refuse to get involved in their patients’ medical aid in dying requests. Design/participants: An exploratory qualitative study based on semi-structured interviews with 22 physicians who expressed a refusal after they received a request for medical aid in dying. Thematic descriptive analysis was used to analyse physicians’ motives for their conscientious objections and the reasons behind it. Results: The majority of physicians who refused to participate did not oppose medical aid in dying. The reason most often cited is not based on moral and religious grounds. Rather, the emotional burden related to this act and the fear of psychological repercussions were the most expressed motivations for not participating in medical aid in dying. Conclusion: The originality of this research is based on what the actual perception is of doing medical aid in dying as opposed to merely a conceptual assent. Further explorations are required in order to support policy decisions such as access to better emotional supports for providers and interdisciplinary support.

scholarly journals Challenges Related to Informal Care Partners’ Involvement in End-of-Life-Care in Assisted Living

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 16-17
Author(s):  
Molly Perkins ◽  
Ann Vandenberg ◽  
Candace Kemp ◽  
Mary Ball ◽  
Joanna Jungerman ◽  
...  
Keyword(s):  
End Of Life ◽  
Informal Care ◽  
Caregiver Burden ◽  
Assisted Living ◽  
End Of Life Care ◽  
Life Care ◽  
Term Care ◽  
Care Partners ◽  
Relational Factors

Abstract Limited empirical evidence suggests that caregiver burden is greater for informal care partners (family and friends) in assisted living (AL) compared with other long-term care settings, particularly within context of end of life. Using qualitative data from a larger 5-year, 7-site study of end-of-life care in AL funded by the National Institute on Aging (R01AG047408), we investigate informal care partners’ involvement in end-of-life care and identify challenges related to informal caregiving that might contribute to care burden. Grounded theory analysis of ethnographic data and in-depth interviews (average interview length = 97 minutes) with 59 racially and ethnically diverse informal care partners (mean age = 60) shows that informal care partner involvement in end-of-life care varies across participants and over time and is shaped by multiple intersecting social and structural determinants. At individual levels, these include many personal, situational, and relational factors. Personal factors include but are not limited to care partners’ own physical and mental health and material resources (e.g., ability to pay for supplementary care). Situational and relational factors include care partners’ awareness (or lack thereof) of residents’ impending death and the quality of the caregiving relationship. AL and wider community-level factors include understaffing, staff turnover, inadequate hospice support, and lack of access to these services. We find that informal care partners navigate these caregiving challenges through a basic social process we conceptualize as “negotiating risks.” Strategies for easing caregiver burden and improving informal care partner and resident quality of life at end of life are implicated.

scholarly journals Cost of shifting from healthcare to long-term care in later life across major diseases: analysis of end-of-life care during the last 24 months of life

2018 ◽  
Vol 13 (1) ◽  
pp. 40-47 ◽  
Author(s):  
Tomoko Terada ◽  
Keiko Nakamura ◽  
Kaoruko Seino ◽  
Masashi Kizuki ◽  
Naohiko Inase
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Long Term Care ◽  
Later Life ◽  
Life Care ◽  
Term Care

scholarly journals Advance care planning preferences in Chinese nursing home residents: results from two cross-sectional studies in Hong Kong and Taiwan

2021 ◽  
Vol 20 (1) ◽  
Author(s):  
Xinyi Xu ◽  
Shu-Wen Tu ◽  
Chia-Chin Lin
Keyword(s):  
Hong Kong ◽  
Nursing Home ◽  
End Of Life ◽  
Advance Directive ◽  
End Of Life Care ◽  
Nursing Home Residents ◽  
Completion Rate ◽  
Life Care ◽  
Term Care

Abstract Background The proportion of hospital deaths has declined in the past few decades, while the proportions of nursing home deaths have increased. This trend of increasing deaths in long-term care facilities underlines the importance of improving end-of-life care provisions in these settings to meet individual preferences and needs. Under these circumstances, a comprehensive understanding of end-of-life care preferences in local nursing home residents can help healthcare professionals and policymakers develop strategies to increase the advance directive completion rate and quality of care. This study aimed to explore and compare advance directive and end-of-life care preferences of nursing home residents in Hong Kong and Taiwan. Methods A structured questionnaire was developed by the research team to investigate advance directive and end-of-life care preferences in older Chinese nursing home residents. Nursing home residents with frail or pre-frail status and over the age of 64 were invited to participate in the study, and information on demographics, functional status, advance directive experiences, and end-of-life care expectations was collected through questionnaire interviews. Results A total of 325 eligible participants from 32 facilities completed the survey, including 238 older residents in Hong Kong and 87 in Taiwan. A significantly lower proportion of the Hong Kong residents had completed an advance directive compared with the Taiwanese (3 vs. 13%, p = 0.001). Among participants who did not have an advance directive, 46% of the Taiwanese participants said they would consider completing one in the future, compared with 20% of the Hong Kong participants (p < 0.001). A total of 79% of the Hong Kong participants and 80% of the Taiwanese participants responded that prolonging life in the given hypothetical dying scenario was “not important” (p = 0.76). Only 14% of participants in Hong Kong and 18% of participants in Taiwan reported prior occurrence of end-of-life care discussions with family members or health professionals (p = 0.37). Conclusions This paper adds evidence in support of improving end-of-life communication and the advance directive completion rate in nursing homes in Hong Kong and Taiwan. Further research is necessary to explore cross-cultural differences in end-of-life preferences and its applications in predicting decision-making and the quality of end-of-life care.

scholarly journals Exploration of the Factor Structure of the Burden Experienced by Individuals Providing End-of-Life Care at Home

2018 ◽  
Vol 2018 ◽  
pp. 1-9 ◽  
Author(s):  
Chizuru Nagata ◽  
Hironori Yada ◽  
Junko Inagaki
Keyword(s):  
Factor Analysis ◽  
End Of Life ◽  
Factor Structure ◽  
Caregiver Burden ◽  
End Of Life Care ◽  
Convergent Validity ◽  
Life Care ◽  
Term Care ◽  
Care At Home ◽  
At Home

In Japan, the number of elderly people who require long-term care is increasing as a result of the country’s aging population. Consequently, the burden experienced by caregivers who provide end-of-life care at home has become a social problem. This study aimed to confirm the factor structure of such caregiver burden by analyzing the Japanese version of the Zarit Caregiver Burden Interview (J-ZBI). The J-ZBI was administered to 389 caregivers providing end-of-life care, and 247 answers were analyzed, with exploratory factor analysis performed on the results. Consequently, a four-factor structure emerged (sacrificing life, personal strain, severe anxiety, and captivity); these four factors, constituting 15 items, were cumulatively named “J-ZBI_15.” In regard to reliability, Cronbach’sαcoefficient for each factor was high; in terms of validity, a confirmatory factor analysis was conducted to examine the four-factor structure, and the goodness of model fit was determined to be satisfactory. Further, the convergent validity was also high. The care burden experienced by those providing end-of-life care at home differs from the burden of caregivers of individuals with other diseases, such as Alzheimer’s. For assessing the burden felt by this population, the 15-item four-factor ZBI model is more appropriate than the single-factor 22-item ZBI, and we also determined that J-ZBI_8 is unsuitable for this task. Thus, measurement of family caregivers’ burden in regard to providing end-of-life care at home should be performed using the 15-item four-factor J-ZBI model.

scholarly journals END-OF-LIFE CARE PREFERENCES AND WELL-BEING IN LONG-TERM CARE RESIDENTS

2019 ◽  
Vol 3 (Supplement_1) ◽  
pp. S669-S669
Author(s):  
Kelly Shryock ◽  
Jacinta Dickens ◽  
Anisha Thomas ◽  
Suzanne Meeks
Keyword(s):  
Quality Of Life ◽  
Positive Affect ◽  
End Of Life ◽  
End Of Life Care ◽  
Long Term Care ◽  
Well Being ◽  
Life Care ◽  
Term Care

Abstract Research on end-of-life care in nursing homes comes largely from the viewpoint of staff or family members. We examined patient perspectives on end-of-life care, preferences for care, and quality of life in long-term care settings. We hypothesized that fulfillment of the Self Determination Theory (SDT) needs of autonomy, competence, and relatedness would be related to better well-being and that the degree to which end-of-life care preferences are seen as possible in the setting would be related to SDT need fulfillment and well-being. Preliminary data, collected from older individuals at the end of life (over 55, presence of significant chronic disease, in long term care setting) (n= 72), demonstrated that autonomy, competence, and relatedness measures were moderately and significantly correlated with well-being as measured by life satisfaction, higher positive affect, lower negative affect, and overall quality of life measures The degree to which residents believed that their end-of-life care preferences could be honored in the setting was also significantly correlated with autonomy, competence, relatedness, positive affect, and psychological quality of life. These results are consistent with SDT and suggest that if long term care settings can promote autonomy, connection, and competence in making end of life decisions, possibly by discovering and fulfilling preferences for end of life care, individuals who end their lives on those settings have potential for greater satisfaction and happiness. These results suggest that SDT is a useful framework for ongoing research on how to improve the end of life experiences of older adults in long term care.

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