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Relatives' perceived quality of palliative care: comparisons between care settings in which patients die.

ABSTRACT: Dying in the preferred setting is an indicator of good palliative care quality. Most people prefer to die at home. But does the quality of care as perceived by their relatives vary depending on the care setting that is the place of death? The aim is to compare (from the relatives perspective) whether there are perceived differences in the quality of palliative care between the settings in which people die.Multivariate linear regression analyses have been carried out using an existing dataset containing information collected using the relatives' version of the Consumer Quality Index (CQ-index) Palliative Care. The dataset includes 1368 relatives of patients with a wide variety of conditions who died in various locations: at home, in hospital, in residential care for the elderly, a hospice, palliative care unit or in another institution (e.g. institutions for people with intellectual disabilities or mental healthcare institutions). The relatives were the first contacts (family members or other people close to the patient) and they received the survey between 6 weeks and 6 months after the bereavement.Based on the raw data, differences between locations in terms of the perceived quality of care initially appeared inconsistent. The multivariate regression analyses however showed that relatives of people who died at home were generally the most positive about the palliative care that the patient and they themselves received when the patient was dying. The care provided by hospices also received a relatively good rating. In hospitals and in residential settings for care of the elderly, the care was rated less highly by the relatives.The quality of palliative care as experienced from the relatives' perspective is highest when the patient dies at home or in a hospice. This is an argument for letting people die at home, if they so wish, as far as possible and feasible.

SUBMITTER: de Boer D

PROVIDER: S-EPMC5559822 | biostudies-other | 2017 Aug

REPOSITORIES: biostudies-other

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Project description:BACKGROUND:In the absence of extant recommendations, the aim of this study was to formalise support practices used by an interdisciplinary team in a palliative-care unit (PCU) for the relatives of patients in the agonal phase preceding death. The secondary objective was to understand the expectations of relatives during this phase in terms of the support provided by professionals and volunteers. METHODS:Thirty-two people took part in this study; all were interviewed through focus groups (FGs). Each FG comprised one category of individuals working in the PCU: nurses, care- assistants, doctors, psychologists, other professionals, palliative-care volunteers, and relatives. Groups were surveyed using an interview guide, and the interviews were recorded and transcribed to enable identification and characterization of all practices. Care practices were classified into four categories: current consensual practices (i.e. performed by all team members), occasional consensual practices, non-consensual practices (performed by one or a few participants), and practices to be developed. RESULTS:In total, 215 practices were mentioned by professionals and palliative-care volunteers: 150 current consensual practices, 48 occasional consensual practices, 1 non-consensual practice, 16 practices yet to be developed, and 29 practices for relatives. Many practices were mentioned by different categories of participants; thus, after cross-checking, the number of practices decreased from 215 to 52. A list of practices deemed desirable by all was drawn up and then validated by the entire interprofessional team. These practices were organised around four themes: providing care and ensuring comfort; communicating, informing, and explaining; interacting; and mobilising interdisciplinary skills. CONCLUSIONS:These results underline the importance of the quality of care provided to patients, the attention given to the relatives themselves, and they highlight the importance of the helping relationship. Following this study, which established a list of varied practices aimed at supporting the relatives of patients in agonal phase, it will be important to set up a broader study seeking to establish a consensus on these practices with an interprofessional group of experts from other PCUs using broad surveys and an adapted methodology. Such studies will make it possible to develop training modules for teams working with relatives.

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Relatives' perceived quality of palliative care: comparisons between care settings in which patients die.

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