Exploring Women’s Perspectives on Communicating Values, Wishes, and Needs in Palliative Care for Gynecological Cancer – A Qualitative Study

Abstract

Background: Palliative care aims to prevent or relieve the suffering of patients in the last phase of life, by assessing physical, psychological, social, and existential needs. Appropriate palliative care is aligned with the patient's values, wishes, and needs. Aim: To gain insight into patients’ expectations, experiences, and wishes, in communicating their values, wishes, and needs with healthcare providers. Methods: A generic, qualitative study was conducted between January and June 2024. Twelve women with recurrent gynecological cancer participated in semi-structured interviews. Participants were recruited from the outpatient clinic of a Dutch teaching hospital. Data was analyzed using thematic analysis. Results: Three themes emerged: 1) women wished to be seen, 2) were navigating for support, influenced by the behavior of both healthcare providers and patients themselves and 3) their involvement in care was related to the patient’s attitude of adopting an accepting approach. Conclusion: These patients' experiences reveal a gap between recognized standards and their practical application. Hesitance from both healthcare providers and patients to discuss end-of-life care resulted in unmet needs. The multitude of involved healthcare providers and a lack of communication across settings complicated the provision of appropriate palliative care. Further research into the role of the general practitioner could provide clarity and enhance collaboration between settings while offering guidance for patients. The use of assessment tools is recommended to empower patients in expressing their needs and assist healthcare professionals in addressing multidimensional needs. Nonetheless, effective palliative care begins with the fundamental elements of the patient-provider relationship, where healthcare providers attentively observe, listen to, and acknowledge the person beyond their illness, starting by looking at the person in front of you.