RESUMO
Background: Amyotrophic lateral sclerosis (ALS) is currently an incurable and fatal disease, which often comes with a high symptom burden at the end-of-life stage. Little is known about nurses' experiences in this context. Objective: To explore the experience of nurses caring for people with ALS at end-of-life. Design: A qualitative multiple-case study design. Method: Individual semi-structured interviews were conducted between February and August 2022 with nurses from Quebec, Canada, who had provided care to at least one person living with ALS at the end-of-life in the past 12 months. The content analysis method was used for data analysis and within-case and cross-case analyses were conducted, as well as comparative analyses according to the type of position held by the participants that determined the cases: (1) home care, (2) hospital and (3) palliative care home. Results: Participating in the study were 24 nurses: 9 were from home care, 8 from hospitals and 7 from palliative care homes. Five main themes were identified: (1) identifying the end-of-life period, (2) communication issues, (3) supporting the need for control, (4) accompanying in the fight culture and (5) the extent of the need for care. A sixth theme was also added in order to report the need expressed by nurses to improve their care of patients living with ALS at end-of-life. Conclusions: Although nurses' experiences varied among the different settings, the study identifies the pressing need for better education and, above all, more resources when caring for a person living with ALS at end-of-life. Future research should explore the experiences of other members of the healthcare team and test interventions designed to improve the quality of life and end-of-life of people living with ALS.
RESUMO
BACKGROUND: In June 2016, the Parliament of Canada passed federal legislation allowing eligible adults to request Medical Assistance in Dying (MAID). Since its implementation, there likely exists a degree of hesitancy among some healthcare providers due to the law being inconsistent with personal beliefs and values. It is imperative to explore how nurses in Quebec experience the shift from accompanying palliative clients through "a natural death" to participating in "a premeditated death." RESEARCH QUESTION/AIM/OBJECTIVES: This study aims to explore how Quebec nurses personally and professionally face the new practice of MAID and their role evolution. RESEARCH DESIGN: A grounded theory design was used. PARTICIPANTS AND RESEARCH CONTEXT: We recruited 37 nurses who participated in or coordinated at least one MAID. Semi-structured interviews and focus groups were conducted and audiotaped. Data collection and analysis followed Strauss and Corbin steps. ETHICAL CONSIDERATIONS: Ethics approval was received from the investigator's affiliated University. Participants were informed regarding the research goal, signed a written consent, and were assigned pseudonyms. FINDINGS/RESULTS: Results show that nurses experienced the wide range of paradoxe during MAID centering around the following eight elements: 1) confrontation abouth death, 2) choice, 3) time of death, 4) emotional load, 5) new Bill, 6) relationship with the person, 7) communication skills, and 8) healthcare setting. The shifting of views and values in this new role is presented by the contradiction of opposites. CONCLUSIONS: A better understanding of the paradox experienced by nurses involved with MAID paves the way for the development of interventions.
