Early palliative care for solid and blood cancer patients and caregivers: Quantitative and qualitative results of a long-term experience as a case of value-based medicine

Abstract

IntroductionCancer patients and their caregivers have substantial unmet needs, that negatively impact the clinical outcome and quality of life. However, interventions aimed to address such needs are still suboptimal, failing to answer the recent healthcare call for the adoption of value-based models of care. In the case of incurable oncologic and hematologic cancers, a value-based model of care should plan advanced care on patients' needs and include the quality of death as an outcome. The integration of early palliative care into standard oncologic care for patients with advanced cancers represents a recent innovative model of assistance whose benefits for patients and caregivers are now widely recognized. The key elements underlying the reasons behind these benefits are the multidisciplinary collaboration (teamwork), an honest and empathetic communication between the early palliative care team, the patient, and the caregiver (rapport building), and the ability to detect changes in the physical/psychosocial wellbeing of the patient, along the whole disease trajectory (constant monitoring).MethodsThis community case study documents the quantitative and qualitative results of a long term clinical and research experience in delivering early palliative care service to address both solid and blood cancer patients' and their primary caregivers' needs.ResultsData showed decreased use of chemotherapy, blood transfusions and referral to intensive care units near the end of life; increased life expectancy; improved symptom burden and mood; increased frequency of goals-of-care and advanced care planning conversations. Hope perception among bereaved caregivers was associated with resilience and realistic expectations raising from honest communication with the early palliative care team and appreciation toward the model. Patients and caregivers perceived the possibility of a good death as realistic and not as an unlikely event as it was for patients and caregivers on standard oncologic care only. Gratitude expressions toward the model and the team were frequently identified in their reports and positively associated with communication and spirituality.ConclusionsThese findings are discussed in the context of an updated literature review regarding value-based care and suggest that early palliative care integrated into standard oncology care may be considered as an effective model of value-based care.

Evaluating the caregiver experience during neoadjuvant therapy for pancreatic ductal adenocarcinoma

“…Previously published studies have highlighted the patient experience during NT for PDAC, as well as the caregiver experience in the setting of unresectable cancer, but little has been written about the caregiver experience during NT for PDAC. 8,23,24 In this cross-sectional mixed-methods analysis of caregivers' experiences and QOL during NT for PDAC, we found that caregivers' well-being is often characterized by emotional stress and anxiety, T A B L E 4 Representative quotes describing neoadjuvant therapy impact on different facets of the caregiver's daily life.…”

Caregiver’s quality of life in advanced cancer: validation of the construct in a real-life setting of early palliative care

“…Through the establishment of an honest and trusting relationship, the EPC team provides comprehensive symptom management; promotes illness understanding and prognostic awareness; supports patient and caregiver engagement in goals-of-care definition and treatment decisions making, including advanced care planning; facilitates coping; and monitors the family bereavement process through post-death family meetings. These interventions are provided through regular consultations with oncologists/hematologists and nurses ( 1 ).…”

“…Early palliative care (EPC) is a recent value-based model providing supportive care for patients who are facing a serious illness, to improve their quality of life (QoL) (1). In the oncohematology setting, EPC is defined as the early integration of palliative care (PC) into standard care, usually within 8 weeks from the diagnosis of incurable cancer (2)(3)(4)(5), in contrast with the model of the standard, late PC, which is usually delivered in the last days of life (6).…”

Electronic Patient-Reported Outcome Measures (ePROMs) Improve the Assessment of Underrated Physical and Psychological Symptom Burden among Oncological Inpatients

“…Additionally, some versions of ePROMs have the feature of directly informing nursing staff about high symptom burden. As a result, nursing staff can take a direct response and initiate adequate symptom management immediately [9]. Since the use of PROMs facilitates the earlier detection of symptoms and needs, it may lead to the earlier integration of palliative care than before.…”

“…Comparing ACPs receiving standard care with those who are receiving early palliative care, it becomes evident that they had less aggressive care at the end of life [10,11]. Moreover, the systematic use of PROMs leads to an improvement in communication between patients and healthcare providers [12,13], increased survival rates [14][15][16], and less visits to the emergency room [9].…”