Outcome measurement and complex physical, psychosocial and spiritual experiences of death and dying

Abstract

Patients with advanced illnesses, especially near the end of life, often experience multiple complex symptoms which may have profound impact on the quality of life of not only the patients but also their family members. Early and prompt recognition of such clinical challenges is linked with better end of life care for the dying patients, their caregivers and family members. In this narrative, which is not meant to be an in-depth systematic review, we attempt to provide an overview of some commonly used outcome measurement tools available for bedside clinical assessment of the different dimensions of suffering, especially near the time of death. We also mention need for recognition of conditions, like delirium and other personal, environmental and social factors, to draw the readers' attention towards the importance of such assessments, as these may influence interpretation of patient responses on the tools being used to measure outcomes.

Evaluating the Thresholds for Clinical Importance of the EORTC QLQ-C15-PAL in Patients Receiving Palliative Treatment

“…[1][2][3][4][5] Timely recognition of clinical problems and initiation of adequate interventions are essential for patients and their families. [6][7][8][9] The systematic collection of patient-reported outcomes (PROs) with well-validated patient-reported outcome instruments can be an important component of symptom monitoring in routine palliative care that contributes to symptom control, allows for better use of health care resources, and results in improved quality of life and health. 8,10,11 However, while the importance of routine PRO assessments has been widely acknowledged, 8,10,11 a meta-analysis by Bush and colleagues suggested that they are still underutilized in palliative care.…”

“…[6][7][8][9] The systematic collection of patient-reported outcomes (PROs) with well-validated patient-reported outcome instruments can be an important component of symptom monitoring in routine palliative care that contributes to symptom control, allows for better use of health care resources, and results in improved quality of life and health. 8,10,11 However, while the importance of routine PRO assessments has been widely acknowledged, 8,10,11 a meta-analysis by Bush and colleagues suggested that they are still underutilized in palliative care. 12 A critical aspect that has been highlighted in this context is the interpretation of PRO instruments, which is challenging for clinicians because of their perceived complexity and level of abstraction.…”

“…It is currently one of the most widely utilized PRO instruments in palliative care settings. 8,28,29 It has been used previously in clinical trials as a primary outcome [30][31][32] and in trials of patients with a metastatic disease. [33][34][35] QLQ-C15-PAL scores are prognostic of survival among patients with far-advanced cancer.…”

Dying Alone during a Pandemic

“…P atients with advanced illnesses such as advanced refractory and terminal cancer, often experience multiple complex symptoms, 1 especially near end of life (EOL), which may have profound impact on the quality of life of patients and their family members. 2 Early and prompt recognition of such clinical challenges is linked with better endof-life care for the dying patients, their caregivers, and family members. 3 The well-being of family care-givers is of paramount importance due to the important role it plays in the well-being of a patient, including clarifying the goals of care (GOC).…”

Advance-Care Planning Implementation Through the Nursing Process

“…In recent decades, biotechnological advances have led to substantial improvements in the biological attention to the human being. However, the psychological, social, and spiritual dimensions that, along with the biological, make up the individual have been disregarded (Azhar & Bruera, 2018).…”