Abstract

PurposeTo compare health care experiences of patients with cancer or non-cancer diseases in their last year of life.MethodsA cross-sectional post-bereavement survey was conducted using an adapted German version of the VOICES questionnaire (VOICES-LYOL-Cologne). Differences in the reported experiences were assessed using a two-sided Pearson’s chi-square test and Mann–Whitney U test.ResultsWe collected data from 351 bereaved relatives. More than half of non-cancer patients were not informed that their disease could lead to death (p < 0.001). When this was communicated, in 46.7% of non-cancer and 64.5% of cancer patients, it was reported by the hospital doctor (p = 0.050). In all, 66.9% of non-cancer and 41.6% of cancer patients were not informed about death being imminent (p < 0.001). On average, non-cancer patients had significantly fewer transitions and hospital stays in their last year of life (p = 0.014; p = 0.008, respectively). Non-cancer patients were treated more often by general practitioners, and cancer patients were treated more often by specialists (p = 0.002; p = 0.002, respectively). A substantially lower proportion of non-cancer patients were treated by at least one member of or in the setting of general or specialized palliative care (p < 0.001).ConclusionsNon-cancer patients experience disadvantages in communication regarding their care and in access to specialized palliative care in their last year of life compared to cancer patients. Regarding the assessment of palliative care needs and the lack of communication of an incurable disease, non-cancer patients are underserved. An early identification of patients requiring palliative care is a major public health concern and should be addressed irrespective of diagnosis.Trial registrationProspectively registered by the German Clinical Trials Register (DRKS00011925, data of registration: 13.06.2017).

Highlights

  • Palliative care aims to improve the quality of life of patients facing multiple symptoms related to a life-threatening illness and that of their families, with particular emphasis being placed on the assessment and management of symptoms [1]

  • This study analyzed the possible differences between patients with cancer and non-cancer conditions in their last year of life according to transitions, communication, generalist or palliative and hospice care utilization, and place of death in Germany

  • Our results show that general practitioners (GPs) mainly treated non-cancer patients, while cancer patients were mostly consulting an outpatient specialist physician and being treated by palliative care specialists

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Summary

Introduction

Palliative care aims to improve the quality of life of patients facing multiple symptoms related to a life-threatening illness and that of their families, with particular emphasis being placed on the assessment and management of symptoms [1]. More attention has been devoted to introducing palliative care early in the trajectory disease in patients with non-malignant diagnoses [4]. Non-cancer diseases account for the lowest proportion of use in palliative care [6,7,8]. In the years between 2007 and 2011, only 8.1% of all non-cancer patients received specialized palliative care [8]. Between 2014 and 2016, 80.5% of all patients receiving specialized outpatient palliative care died from cancer [9]. 68–97% of non-cancer patients have not received any palliative care services, compared to 50% of cancer patients [9]. The percentage of non-cancer patients receiving hospice care in the USA was much higher (29.6% in 2018) [10]

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