Nederlandse titel proefschrift Decision-making and communication at end of life of patients: Exploring hospital nurses' roles, challenges and support needs
Engelse titel proefschrift Decision-making and communication at end of life of patients: Exploring hospital nurses' roles, challenges and support needs
Promovendus Arends, Susanne
Gepromoveerde is verpleegkundige (geweest)
Universiteit Vrije Universiteit Amsterdam
Datum promotie 09/04/2025
Promotores Francke, A.L., Jongerden, Irene, Pasman, Henriëtte Roeline Willemijn
Abstract (Engels)

When a patient is at the end of life, the illness and treatments and the prognosis of an impending death have a big effect on these patients and cause physical and psychosocial changes. Patients may face difficult decisions about potentially life-prolonging treatments. Hospital nurses can have a significant contribution to the decision-making process, yet they are not always actively involved. Additionally, hospital nurses play an important role in addressing changes in psychosocial needs. However, these needs often remain unaddressed, especially when it concerns sensitive topics such as changes in intimacy and sexuality. This thesis explores the involvement of hospital nurses in decision-making about potentially life-prolonging treatments and their communication with patients with advanced cancer about psychosocial needs. The first part of this thesis focuses on the experiences and perceptions of hospital nurses and physicians regarding hospital nurses' involvement in decision-making about potentially life-prolonging treatments in patients with a short life expectancy. A survey study examined hospital nurses’ perspectives on their preferred and actual involvement in these decisions. The findings indicate that hospital nurses wish to have a more active role in decision-making than they currently have. This is followed by a qualitative interview study with medical specialists across various hospital settings. Physicians acknowledge the valuable role of nurses in decision-making about potential life-prolonging treatment, viewing it as complementary to their own and the patient's involvement. Further, a qualitative interview study investigated hospital nurses’ experiences with moral distress when they care for patients who receive potentially life-prolonging treatments without the nurse being involved in the decision-making process. The findings reveal that hospital nurses experience moral distress when they are involved in life-prolonging treatments. This was described as feelings of powerlessness and frustration. The second part of this thesis addresses communication about changes in psychosocial needs in patients with advanced cancer. In a systematic review we evaluated existing communication tools designed to support discussions about changes intimacy and sexuality in patients with cancer. Various tools were found, including PLISSIT, and demonstrated positive effects on sexual functioning, quality of life and quality of care. Additionally, these tools appeared to be feasible for enhancing communication between healthcare professionals and patients diagnosed with cancer, whether in individual, couple or groups settings. Then a mixed methods study presents the development and evaluation of a multi-component programme to support hospital nurses’ communication about psychosocial needs, including changes in intimacy and sexuality, with patients with advanced cancer. The findings suggest that nurses perceive an improvement in their competences regarding conversations about psychosocial needs, and especially in addressing changes in intimacy and sexuality after the training that was part of the multi-component programme. Overall, this thesis highlights the importance of involving hospital nurses in decision-making about life-prolonging treatments and addressing psychosocial needs in patients with advanced cancer. The findings underscore the need for greater nurse participation in clinical decisions and the implementation of effective communication tools and training programs to enhance patient care.