Caregivers’ divergent perspectives on patients’ well-being and attitudes towards hastened death in Germany, Poland and Sweden

Benatar, Michael; Kuźma‐Kozakiewicz, Magdalena; Keller, Jürgen; Maksymowicz-Śliwińska, Anna; Barć, Krzysztof; Nieporęcki, Krzysztof; Finsel, Julia; Vázquez, Cynthia; Semb, Olof; Linse, Katharina; Häggström, Ann-Cristin; Stenberg, Erica; Ciećwierska, Katarzyna; Szejko, Natalia; Uttner, Ingo; Herrmann, Andreas; Petri, Susanne; Meyer, Thomas D.; Ludolph, Albert C.; Lulé, Dorothée

doi:10.1080/21678421.2021.1936064

Cited by 4 publications

(8 citation statements)

References 41 publications

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“…Decision‐making is an essential component of patient‐centred healthcare and has a pivotal role in achieving satisfactory compliance to treatment. In addition to the patient‐ and caregiver‐dependent factors, 21 , 22 , 23 regular interactions with the physicians are likely to influence the decision‐making process.…”

Section: Discussionmentioning

confidence: 99%

Well‐being on supportive techniques in amyotrophic lateral sclerosis: from neurologists' perspective

Barć

Lulé

Finsel

et al. 2022

Ann Clin Transl Neurol

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Objective: To investigate intercultural neurologists' perception of well-being in patients with amyotrophic lateral sclerosis (ALS) using gastrostomy (PEG), non-invasive, and/or invasive ventilation (NIV/IV) and to analyse the determinants and impact on the management of the above medical interventions (MIs). Methods: The study was based on anonymous questionnaires addressing the clinical approach and personal attitude towards the use of PEG, NIV and IV in ALS patients completed by 465 neurologists: 228 from Germany and 237 from Poland. Results: The German and Polish neurologists estimated the quality of life in ALS patients using PEG and NIV as neutral, whilst low in individuals using IV. A regression model revealed an independent influence of palliative care training (PCT) and age on that attitude in the German group. Higher values of estimated patients' depressiveness on PEG, NIV and IV were found amongst the Polish neurologists. Marital status, experience in ALS and being a parent independently influenced the perception of patients' depressiveness in the German, whilst marital status, age and PCT were factors in the Polish group. Amongst German neurologists, a higher perception of patients' depressiveness in individuals using PEG, NIV and IV was linked to the later timing of the MIs discussion. In the Polish group, it was a lower estimation of QoL in patients using PEG. Conclusion: Neurologists' perception of ALS patients' well-being on MIs reflects their demographic status, professional experience and potentially their cultural background. This perception plays an important role in the timing of MIs discussion, possibly influencing the decision-making process.

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Section: Discussionmentioning

confidence: 99%

Well‐being on supportive techniques in amyotrophic lateral sclerosis: from neurologists' perspective

Barć

Lulé

Finsel

et al. 2022

Ann Clin Transl Neurol

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“…The other two articles we found, both focused on patients with ALS. Andersen et al 16▪ explored and analyzed differences between ALS patients’ own perception of well-being and wish for hastened death compared to their caregivers estimation of these measures. They recruited patient-carer dyads in three different countries.…”

Section: Resultsmentioning

confidence: 99%

“…Interestingly, both articles on ALS patients mentioned the ‘well-being paradox’, a phenomenon where individuals review their health positively, despite the presence of high levels of multimorbidity as they adapt to their limitations and go through a readjustment of values, expectations and priorities in everyday life 16,17,21–23. Aust et al .…”

Section: Resultsmentioning

confidence: 99%

“…Interestingly, both articles on ALS patients mentioned the 'well-being paradox', a phenomenon where individuals review their health positively, despite the presence of high levels of multimorbidity as they adapt to their limitations and go through a readjustment of values, expectations and priorities in everyday life [16,17,[21][22][23]. Aust et al [17] suggested that family appears to adapt less successfully to the disease and associated experiences of loss in contrast to the frame shift on the side of the patients.…”

Section: Key Pointsmentioning

confidence: 99%

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Patient-reported outcomes versus proxy-reported outcomes in supportive and palliative care: a summary of recent literature

Devlies

Callens

Roo

2023

Current Opinion in Supportive &Amp; Palliative Care

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Purpose of the review Patient-reported outcomes are one of the most valuable clinical outcome measures. In palliative care, however, they are often difficult to retrieve. Therefore, proxy-reported outcomes are sometimes used as a surrogate. As there have been concerns about the validity of these by-proxy reports, the authors reviewed the most recent literature for the most recent insights in using proxy-reported outcomes. Recent findings The authors found very little new research on patient versus proxy-reported outcomes in palliative care. The results of the studies the authors found seem to correlate with older evidence concluding that there are many factors influencing a discrepancy between patients’ outcomes and how this is perceived by their proxies, such as the well-being paradox, caregiver burden, and the proxies’ own mental well-being. Summary While proxies’ opinions and knowledge of the patients’ values are important factors to consider, proxy-reported outcomes should be used with caution and viewed as a complementary perspective rather than a true substitute for the individual patient’s outcome.

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“…The CGs of ALS patients are often heavily burdened with their role and experience severe emotional and physical distress [16,24]. In the past years it was observed that the CG's judgment of the patient's QoL and mood was lower, while the wish for hastened death heavily misjudged -either higher or lower but not in line with the patient's self-rating [6,32]. The opinions of the CGs related to patient's QoL and wish of death were conditioned by the CGs' personal physical and emotional state [32], which could have possibly influenced the surrogate decisions they might have to take in case of the patient being in an unresponsive state (e.g.…”

Section: Discussionmentioning

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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Caregivers’ divergent perspectives on patients’ well-being and attitudes towards hastened death in Germany, Poland and Sweden

Cited by 4 publications

References 41 publications

Well‐being on supportive techniques in amyotrophic lateral sclerosis: from neurologists' perspective

Well‐being on supportive techniques in amyotrophic lateral sclerosis: from neurologists' perspective

Patient-reported outcomes versus proxy-reported outcomes in supportive and palliative care: a summary of recent literature

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

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