Talking about the end of life: communication patterns in amyotrophic lateral sclerosis – a scoping review

Erdmann, Anke; Spoden, Celia; Hirschberg, Irene; Neitzke, Gerald

doi:10.1177/26323524221083676

Cited by 4 publications

(3 citation statements)

References 115 publications

(323 reference statements)

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“…During the COVID-19 pandemic we also offered interviews via video-chat ( Table 1 ). We used an interview guide ( S1 Table ) based on our literature review [ 17 , 18 ], which contained the following themes: 1) present life with the illness, 2) past illness experiences, 3) future plans and 4) informational and counselling needs for life-sustaining treatment, decision-making and options regarding death. The interviews were audio-recorded and transcribed verbatim, transcripts were shared with participants upon request.…”

Section: Methodsmentioning

confidence: 99%

Coping and end-of-life decision-making in ALS: A qualitative interview study

Spoden,

Wenzel,

Erdmann

et al. 2024

PLoS ONE

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How do people with amyotrophic lateral sclerosis (PALS) deal with their diagnosis and engage in end-of-life decision-making? What informational or supportive needs do they have for counselling about life-sustaining treatment and end-of-life care? Which correlating conditions and influences relate to these needs and how do they connect to the wish to die or wish to live? We conducted a qualitative interview study with 13 people with ALS in Germany from March 2019 to April 2021. Data collection and analysis followed a grounded theory-based approach and revealed close relationships between coping, informational needs and the preparedness for decision-making. We identified the coping strategies ‘avoid thinking about end-of-life’ and its counterpart, ‘planning ahead to be well-prepared,’ and differentiated the latter into the patterns ‘withdrawing from life and taking precautions against life-prolongation’ and ‘searching for a new meaning in life and preparing for life-sustaining treatment’. The approaches are based on individual perceptions, attitudes and motives and can be positively/negatively reinforced by healthcare professionals (HCP), family and other interpersonal networks, but also by disease progression and in reaction to health care services. Type and degree of needs concerning information and counselling differed according to coping strategies. These strategies may vary over time, resulting in different support needs. Our findings signify that deep insight is needed into PALS‘ coping processes to understand their decision-making about life-sustaining treatment. Healthcare professionals should be sensitive to illness experiences beyond medical aspects and foster coping as a biographical process to better support people with ALS.

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Section: Methodsmentioning

confidence: 99%

Coping and end-of-life decision-making in ALS: A qualitative interview study

Spoden,

Wenzel,

Erdmann

et al. 2024

PLoS ONE

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“…These reviews focused on different aspects of the wish to hasten death, namely: (i) the feeling of being a burden and its relation to a wish to hasten death [ 30 ]; (ii) meaning in life interventions implemented in patients with advanced diseases and their context, mechanisms, and outcomes about a wish to hasten death [ 5 ]; (iii) existing instruments for assessing the wish to hasten death [ 29 ]; (iv) stakeholders’ perspectives about the wish to hasten death [ 21 ]; and (v) reasons and meanings behind a wish to hasten death [ 4 , 19 ]. Other reviews explored the wish to hasten death in specific medical conditions (e.g., amyotrophic lateral sclerosis) or care settings (e.g., long-term care facilities) [ 31 , 32 ]. To the best of our knowledge, none of these reviews performed an in-depth appraisal and analysis of the meanings behind the wish to hasten death and/or desire to die in relation to or based on the above-mentioned ethical principles of autonomy, dignity, and vulnerability.…”

Section: Introductionmentioning

confidence: 99%

A bioethical perspective on the meanings behind a wish to hasten death: a meta-ethnographic review

Borges,

Hernández-Marrero,

Martins Pereira

2024

BMC Med Ethics

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Background The expressions of a “wish to hasten death” or “wish to die” raise ethical concerns and challenges. These expressions are related to ethical principles intertwined within the field of medical ethics, particularly in end-of-life care. Although some reviews were conducted about this topic, none of them provides an in-depth analysis of the meanings behind the “wish to hasten death/die” based specifically on the ethical principles of autonomy, dignity, and vulnerability. The aim of this review is to understand if and how the meanings behind the “wish to hasten death/die” relate to and are interpreted in light of ethical principles in palliative care. Methods We conducted a meta-ethnographic review according to the PRISMA guidelines and aligned with Noblit and Hare’s framework. Searches were performed in three databases, Web of Science, PubMed, CINAHL, with no time restrictions. Original qualitative studies exploring the meanings given by patients, family caregivers and healthcare professionals in any context of palliative and end-of-life care were included. A narrative synthesis was undertaken. PROSPERO registration CRD42023360330. Results Out of 893 retrieved articles, 26 were included in the analysis, accounting for the meanings of a total of 2,398 participants. Several factors and meanings associated with the “wish to hasten death” and/or “wish to die” were identified and are mainly of a psychosocial and spiritual nature. The ethical principles of autonomy and dignity were the ones mostly associated with the “wish to hasten death”. Ethical principles were essentially inferred from the content of included articles, although not explicitly stated as bioethical principles. Conclusions This meta-ethnographic review shows a reduced number of qualitative studies on the “wish to hasten death” and/or “wish to die” explicitly stating ethical principles. This suggests a lack of bioethical reflection and reasoning in the empirical end-of-life literature and a lack of embedded ethics in clinical practice. There is a need for healthcare professionals to address these topics compassionately and ethically, taking into account the unique perspectives of patients and family members. More qualitative studies on the meanings behind a wish to hasten death, their ethical contours, ethical reasoning, and implications for clinical practice are needed.

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“…Starting a discussion concerning end-of-life treatment might be difficult for physicians with regard to the right timing of appropriate information according to patients' needs, which may thus be determined not only by physicians' training, but also by professional and life experience [7]. Also not all the patients are eager to undertake such discussions, halted at times by their avoidant type of coping strategies with the fatal disease [8,19,21], which are known to be protective to secure QoL for a certain amount of time [38]. Patients' ultimate choices may thus be influenced by legal regulations (advance directives, power of attorney given to the CG, withdrawing life-sustaining therapies on request and assisted dying), individual attitudes towards life-prolonging/shortening methods, and personal circumstances (medical, social, financial, cultural etc.)…”

Section: Introductionmentioning

confidence: 99%

Attitudes of caregivers towards prolonging and shortening life in advanced stages of amyotrophic lateral sclerosis

Maksymowicz-Śliwińska,

Lulé,

Nieporęcki

et al. 2023

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Introduction: Inevitable disease progression in amyotrophic lateral sclerosis (ALS) forces patients and their caregivers (CGs)to reflect on end-of-life treatment. The CGs are often heavily burdened with their role of surrogate decision-makers. The aim of the study was to analyze attitudes of CGs and presumable attitudes of ALS patients from the CGs' perspective towards palliative care in advanced disease stages. Material and methods: One hundred and sixty four CGs from Germany and Poland were interviewed regarding their own preferences and patients' ideational attitudes towards life-prolonging (invasive and non-invasive ventilation, tube feeding) and life-shortening methods (termination of measures, active measures if permitted by law). The data were correlated with patient-and CG-related factors: demographic and clinical data, care commitment, depression and quality of life (QoL). Results: The CGs were mostly female spouses of ALS patients, with secondary/higher education. Nearly 70% (81% in Poland, 57% in Germany; p = 0.0001) reported positive attitudes towards life-prolonging methods, which positively correlated with religiousness and negatively with patients' age. Approximately 40% of CGs (25% and 51% respectively; p = 0.001) reported positive attitudes towards life-shortening methods. It positively correlated with time since diagnosis and negatively with the CG's QoL, religiosity and religious/spiritual faith as factors that significantly influenced end-of-life decisions. There was a strongly positive correlation between CGs' positive attitudes towards life-shortening methods and presumed positive patients' attitudes assessed by their CGs (p < 0.000001). Conclusions: Although attitudes towards treatment differed between countries, the CGs of ALS patients were generally positive towards life-prolonging treatment. A greater acceptance of life-shortening methods in the case of longer disease duration and poorer QoL may indicate worse coping with disease progression and weaker adaptation mechanisms in CGs compared to those previously reported in ALS patients. A close resemblance of the CGs' answers to probable patients' attitudes reported by the CGs indicates that many GCs might actually express their own culturally shaped attitudes towards end-of-life methods. In light of earlier-reported discrepancies between presumed opinions of the CGs and of patients themselves, a greater focus should be placed on thorough discussions on future treatment options with ALS patients in the presence of their CGs, to stay in line with the patient's authentic will.

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Talking about the end of life: communication patterns in amyotrophic lateral sclerosis – a scoping review

Cited by 4 publications

References 115 publications

Coping and end-of-life decision-making in ALS: A qualitative interview study

Coping and end-of-life decision-making in ALS: A qualitative interview study

A bioethical perspective on the meanings behind a wish to hasten death: a meta-ethnographic review

Attitudes of caregivers towards prolonging and shortening life in advanced stages of amyotrophic lateral sclerosis

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