The Difficulties in End-of-Life Discussions - Family Inventory (DEOLD-FI): Development and Initial Validation of a Self-Report Questionnaire in a Sample of Terminal Cancer Patients

Betker, Liv; Nagelschmidt, Katharina; Leppin, Nico; Knorrenschild, Jorge Riera; Volberg, Christian; Berthold, Daniel; Sibelius, Ulf; Rief, Winfried; Barke, Antonia; Blanckenburg, Pia von; Seifart, Carola

doi:10.1016/j.jpainsymman.2021.04.022

Cited by 3 publications

(2 citation statements)

References 43 publications

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“…One-third of the other respondents expressed an interest in such a discussion. These findings indicate that there is a need among a significant proportion of patients to discuss treatment and care options, as shown in other studies of advanced-stage cancer patients [31]. Although 50% of the respondents were not (yet) willing to have such discussions, the treating physician should determine in the patient interview whether there is a need for ACP on the part of the patient.…”

Section: Discussionsupporting

confidence: 51%

End-of-Life Care Preferences of Patients with Advanced Urological Malignancies: An Explorative Survey Study at a Tertiary Referral Center

Volberg,

Urhahn,

Pedrosa Carrasco

et al. 2024

Current Oncology

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Background: Many people want to die at home, but it is often not possible because they do not share their wishes with family members. This study was conducted to find out the extent to which patients with advanced urological malignancies had wishes regarding their final stage of life, made arrangements accordingly, and communicated their wishes to relatives and health care professionals. Methods: We conducted a survey among advanced urological tumor patients during their clinic visit at a German university hospital using a 31-item questionnaire. Inclusion criteria were metastatic or irresectable prostate cancer, urothelial carcinoma, or renal cell carcinoma. Results: In total, 88 patients (76 male, 12 female) completed the questionnaire, and 62 of those respondents (70%) had received their tumor diagnosis within the past 5 years. Symptoms were reported by 80%, and 18% described five or more symptoms. The majority (88%) stated that they had thought about their preferred place of death but 58% had not informed anyone about it. The preference for a hospice as the place of death correlated statistically significantly with the absence of a domestic partnership (p = 0.001) or marriage (p < 0.001) and with a high number of symptoms (≥5; p = 0.009). However, 73% had not talked with their urological oncologist about care options in case their health deteriorated though 36% of those were interested in having a conversation about it. Conclusions: Our results showed that 9 out of 10 patients reflected on their preferred place of death but only a few discussed it with anyone. Based on this finding, physicians and healthcare staff should initiate discussions about early care planning so that patients in incurable situations can express their wishes regarding their preferred place of death.

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Section: Discussionsupporting

confidence: 51%

End-of-Life Care Preferences of Patients with Advanced Urological Malignancies: An Explorative Survey Study at a Tertiary Referral Center

Volberg,

Urhahn,

Pedrosa Carrasco

et al. 2024

Current Oncology

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“…A negative attitude toward death is correlated to less acceptance of ACP discussion among Chinese patients and families (Brown et al 2014;Schichtel et al 2021;Shen and Yang 2020;Yin 2022;Yuan et al 2022;Zhu and Xu 2014). Feeling a psychological burden and discomfort was reported by patients in 5 studies (Betker et al 2021;Curtis and Patrick 1997;Fenton et al 2021;Yuan et al 2022;Zhu and Xu 2014), and the topic was not welcoming. Emotional burden can also be a barrier for healthcare professionals.…”

Section: Emotionsmentioning

confidence: 99%

What makes advance care planning discussion so difficult? A systematic review of the factors of advance care planning in healthcare settings

Suen,

Chow,

Woo

et al. 2024

Pall Supp Care

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Objectives Existing systematic reviews related to advance care planning (ACP) largely focus on specific groups and intervention efficacy or are limited to contextual factors. This research aims to identify the modifiable factors perceived by different users of ACP in healthcare settings and inform healthcare professionals about the factors affecting ACP practice. Methods Five English-language databases (ProQuest, PubMed, CINAHL Plus, Scopus, and Medline) and two Chinese-language databases (CNKI and NCL) were searched up to November 2022. Empirical research identifying factors related to ACP in healthcare settings was included. ACP is defined as a discussion process on future end-of-life care. Thematic synthesis was performed on all included studies. Results A total of 1871 unique articles were screened; the full texts of 193 were assessed by 4 reviewers, and 45 articles were included for analysis. Twenty-two (54%) studies were qualitative, 15 (33%) were quantitative, and 6 (13%) used mixed methods. Foci varied from 28 (62%) studies on a single subject group (either patient, family, or physician), 11 (25%) on 2 subject groups (either patient and family or patient and healthcare professional), and 6 (13%) covered 3 subject groups (patient, family, and healthcare professional). Among the 17 studies involving more than 1 subject group, only 2 adopted a dyadic lens in analysis. Complex interwoven factors were categorized into (1) intrapersonal factors, (2) interpersonal factors, and (3) socio-environmental factors, with a total of 11 themes: personal belief, emotions, the burden on others, timing, responsiveness, relationship, family dynamics, experience, person taking the lead, culture, and support. Significance of results Patients, families, and healthcare professionals are the essential stakeholders of ACP in healthcare settings. Factors are interweaved among the intrapersonal, interpersonal, and socio-environmental dimensions. Research is warranted to examine the dynamic interactions of the 3 essential stakeholders from a multidimensional perspective, and the mechanism of the interweaving of factors.

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Difficulties of Cancer Patients’ Relatives in End-of-Life Discussions: Validation of a Questionnaire

Betker,

Senßfelder,

Knorrenschild

et al. 2024

Journal of Pain and Symptom Management

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The Difficulties in End-of-Life Discussions - Family Inventory (DEOLD-FI): Development and Initial Validation of a Self-Report Questionnaire in a Sample of Terminal Cancer Patients

Cited by 3 publications

References 43 publications

End-of-Life Care Preferences of Patients with Advanced Urological Malignancies: An Explorative Survey Study at a Tertiary Referral Center

End-of-Life Care Preferences of Patients with Advanced Urological Malignancies: An Explorative Survey Study at a Tertiary Referral Center

What makes advance care planning discussion so difficult? A systematic review of the factors of advance care planning in healthcare settings

Difficulties of Cancer Patients’ Relatives in End-of-Life Discussions: Validation of a Questionnaire

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