Patient-centeredness to anticipate and organize an end-of-life project for patients receiving at-home palliative care: a phenomenological study

Abstract

BackgroundThe development of end-of-life primary care is a socio-medical and ethical challenge. However, general practitioners (GPs) face many difficulties when initiating appropriate discussion on proactive shared palliative care. Anticipating palliative care is increasingly important given the ageing population and is an aim shared by many countries.We aimed to examine how French GPs approached and provided at-home palliative care. We inquired about their strategy for delivering care, and the skills and resources they used to devise new care strategies.MethodsTwenty-one GPs from the South of France recruited by phone according to their various experiences of palliative care agreed to participate. Semi-structured interview transcripts were examined using a phenomenological approach inspired by Grounded theory, and further studied with semiopragmatic analysis.ResultsOffering palliative care was perceived by GPs as a moral obligation. They felt vindicated in a process rooted in the paradigm values of their profession. This study results in two key findings: firstly, their patient-centred approach facilitated the anticipatory discussions of any potential event or intervention, which the GPs openly discussed with patients and their relatives; secondly, this approach contributed to build an “end-of-life project” meeting patients’ wishes and needs. The GPs all shared the idea that the end-of-life process required human presence and recommended that at-home care be coordinated and shared by multi-professional referring teams.ConclusionsThe main tenets of palliative care as provided by GPs are a patient-centred approach in the anticipatory discussion of potential events, personalized follow-up with referring multi-professional teams, and the collaborative design of an end-of-life project meeting the aspirations of the patient and his or her family. Consequently, coordination strategies involving specialized teams, GPs and families should be modelled according to the specificities of each care system.

Home-based palliative care management: what are the useful resources for general practitioners? a qualitative study among GPs in France

“…In our sample, regional assistance networks and home-based hospitalization were described as an efficient solution to social isolation. These findings are consistent with data from previous studies [ 9 , 18 – 22 ]. In our study, a multidisciplinary approach such as Hospitalization at Home was deemed necessary for the success of outpatient management when reaching the end of their life.…”

“…The participants considered that sharing the medical decision with the patient and their relatives encouraged a quality relationship between the patient and their physician. These results are consistent with the work of Oude Engberink et al who emphasized the necessity for patient centeredness in home-based palliative care [ 9 ]. According to the End-Of-Life National Observatory Report, [ 2 ] the process of choosing where the patient wants to die is more important than the final decision, and the quality of such a choice depends on the respect for the patients’ values as well as the availability of adequate information and the patient’s involvement in making the choice: this is the principle of shared medical decisions [ 27 – 32 ].…”

“…A 2014 French study studied the experiences of the practitioners and the skills involved during home-based palliative care, with the goal of identifying their needs. Despite a relative lack of specific training, the practitioners used a patient-centeredness strategy and worked as multidisciplinary teams to plan ahead, while involving the patient’s family in the medical decisions [ 9 ]. This study was centered around practitioner experiences and their training needs, but did not address the resources that these practitioners used.…”

General practitioners’ perceptions of best practice care at the end of life: a qualitative study

“…Despite this, most studies in this area have focused on the perspective of patients and families, 17,18 or GPs delivering palliative care and their perceptions of their day-to-day tasks. [19][20][21][22][23][24][25] Only one study has included specific questions on what GPs consider best practice palliative care, 26 though this was not the primary aim of the study. It also did not involve Australian GPs, and findings may not generalise to an Australian setting due to differences in healthcare systems and social norms.…”

A phenomenological study of nurses experience about their palliative approach and their use of mobile palliative care teams in medical and surgical care units in France

“…First, empirical categories emerge by constant comparison. Secondly semiopragmatical analysis allowed the logical ordering of these empirical categories according to Peirce's theory of signs [20,21]. Typically, as a result of this ordering, the conceptually densest category (i.e., of the highest level in the hierarchy of signs) commanded the meaning of the phenomenon at play.…”