Experiences of Primary Care Nurse Case Managers in Palliative Care Needs Identification and Complex Chronic Patients’ Referral to Advanced Palliative Care Resources

Abstract

Introduction: Palliative needs assessment and referral to advanced palliative care resources are fundamental aspects of complex chronic patients’ care. Primary care Nurse Case Managers play a key role in the care of these patients. Objective: We aimed to describe the experiences of primary care Nurse Case Managers in palliative care needs identification and complex chronic patients’ referral to advanced palliative care resources. Method: This is a qualitative descriptive study with a phenomenological approach. Semi-structured online interviews were conducted with primary care Nurse Case Managers. A thematic analysis was performed using ATLAS.ti software. Results: 20 nurses participated, 16 of whom were women, with a mean age of 52.3 years and an average of 15.9 years of experience in primary care. Regarding “Palliative care Needs Assessment”, four sub-themes have been identified: “What do you understand?”, “How do you assess?”, “Difficulties” and “Alternatives” to current palliative care needs assessment. For the “Palliative Care Referral” theme four sub-themes have been identified: “Criteria”, “Tools”, “Difficulties” and “Alternatives” for referral. Discussion: Palliative needs are identified in patients with incurable diseases when there are no curative treatment options and when quality of life must be prioritized. Symptoms, general condition, progression, and comorbidity are assessed. Open interviews and home visits are essential for assessing the social and family context and the home resources available. Barriers identified include the conspiracy of silence, limited training in non-oncological palliative care, and a lack of staff and caregiver’s understanding of illness situation. The presence of difficult symptoms and a limited life expectancy were identified as key criteria for referral to palliative care. The physician’s assessment, the family’s request, and consultation with specialized teams play a key role in prognosis. Barriers include late referrals, lack of a palliative background, inequity in access to resources, and low visibility of the palliative care needs of non-cancer patients. Conclusions: Significant challenges remain in identifying palliative needs and referral to specialized resources, highlighting the need to optimize resources, strengthen professional training, and improve coordination between levels of care to ensure quality palliative care.