The World Health Organization (WHO) defines QoL as an individual's perception of their position in life within the context of the culture and value systems in which they live, and in relation to their goals, expectations, standards, and concerns.1 Despite this comprehensive conceptualization, there is no universally accepted definition of QoL, particularly in PC, where perceptions of well-being are influenced by the underlying disease, comorbidities, stage of illness, and limited life expectancy.2,3

Although palliative care (PC) is increasingly delivered in community and home-based settings, hospitalization remains common among patients with advanced disease. Acute symptom exacerbations, clinical instability, complex clinical decision-making, and transitions of care frequently require inpatient management, especially in the last months of life.4,5 These circumstances may significantly influence patients’ QoL and distinguish hospitalized PC patients from those receiving care in outpatient or home settings.

In hospital environments, patients often experience a high symptom burden, reduced functional capacity, and limited energy for lengthy assessments.6 Consequently, QoL instruments used in this context must be feasible, sensitive to rapid clinical changes, and capable of capturing dimensions relevant to end of life care without imposing excessive burden on patients.7

Within the philosophy of PC, QoL is considered a central therapeutic objective, with the purpose of ensuring comfort, dignity, and comprehensive support for patients and their families.1,8 In PC research, QoL has generally been assessed as a health-related construct, predominantly through multidimensional approaches,2,3,9–11 or, less frequently, through global measures based on single-item assessments.9

Many studies conducted in hospital settings describe PC delivered in tertiary or specialized care environments, such as university hospitals, oncology centers, or dedicated inpatient PC units. These settings are characterized by high clinical complexity, access to advanced diagnostics, and multidisciplinary teams, which may influence both the content and applicability of QoL assessment tools.12 Distinguishing between general hospital care and specialized or tertiary care is therefore essential when interpreting evidence related to QoL measurement.

Multiple instruments have been developed and applied to evaluate QoL in PC.2,14Albers et al.14 proposed a framework identifying core domains relevant to patients with incurable illness, including physical comfort, physical functioning, cognitive functioning, psychological, social and spiritual well-being, as well as perceived quality of care.

Spirituality, as defined by the 2020 EAPC guidelines, refers to dynamic aspects of human life related to meaning, purpose, transcendence, and connectedness with oneself, others, nature, or the sacred, both within and beyond religious contexts.

Since QoL is a dynamic construct influenced by individual characteristics, disease-related factors, symptom burden, coping capacity, and prognosis, it has also been proposed that additional domains, such as meaning, purpose, spirituality, grief,15 and quality of death,16 particularly in the context of advanced disease and end of life care.However, not all domains considered important to patients are captured, such as financial and quality of death.14–16

The methodological quality of QoL instruments requires rigorous evaluation of psychometric properties, including validity (construct, content, and criterion), reliability (internal consistency and test–retest stability), and responsiveness.2,3,13,14 Evidence from literature reviews indicates that many instruments present limited evaluation of these properties, especially responsiveness and construct validity, which may impair their applicability in both clinical practice and research.

Although previous reviews have summarized the instruments available for QoL assessment in PC,3,14 a scoping review is needed to comprehensively map the tools currently applied in hospitalized patients receiving PC. This review aims to identify and describe QoL assessment instruments used in hospital-based pPC, examining their characteristics, psychometric evidence, and contextual relevance, including advances in validation methodologies and the incorporation of domains such as spirituality and quality of death, as well as instruments validated in Brazilian Portuguese. By synthesizing existing evidence, this scoping review seeks to inform clinicians and researchers about the strengths and limitations of available instruments and to highlight gaps for future research and instrument development.

This review identified eight instruments used to assess QoL in hospitalized patients receiving PC, revealing substantial variability in their scope and applicability. Most tools were not specifically developed for hospital settings, which may limit their ability to capture the complex and rapidly changing needs of this population. Overall, the findings indicate that existing assessment tools predominantly focus on physical and psychological domains, while existential and end of life–related aspects are less consistently addressed. Furthermore, most tools were developed and validated in high-income countries and primarily applied to oncology populations, with limited cross-cultural adaptation.

Most instruments were developed for patients diagnosed with advanced-stage cancer. However, conditions such as heart failure, chronic obstructive pulmonary disease (COPD), HIV/AIDS, and neurological disorders also require specialized monitoring and tailored assessment tools.39,40

Consistent with previous literature, physical and psychological domains were prioritized across instruments, reflecting the high symptom burden and emotional distress commonly experienced by hospitalized PC patients.10,7 In contrast, social, spiritual, and existential dimensions were less consistently assessed, despite their recognized importance in PC outcomes.10

The review also demonstrated that instrument feasibility varied according to patients’ functional status and expected prognosis. Shorter instruments appeared more suitable for hospitalized patients with limited life expectancy, whereas longer and more comprehensive tools may be more appropriate earlier in the disease trajectory.7,6 However, few studies explicitly evaluated QoL instruments across different stages of palliative care, limiting conclusions regarding their longitudinal applicability.

The scarcity of validated tools for diverse life-limiting conditions may hinder the delivery of individualized healthcare aligned with patients' and families' preferences and needs,41 as signs and symptoms may vary depending on the clinical condition42 and the emotional status of the patient. Therefore, instruments should be sensitive to patient differences and culturally adapted for vulnerable populations to promote equitable, effective, and safe care.

Instrument selection should also consider patients' life expectancy, as needs may differ with disease progression. Miyashita et al.43 observed that dimensions related to physical and psychological comfort, maintenance of hope and independence, quality of family relationships and communication with healthcare teams, and spirituality are determinants for QoL. These findings reinforce the centrality of spiritual, psychological or emotional care, understood as a transversal axis of the palliative process.16,44–46

Physical and psychological/emotional domains were contemplated in the majority of instruments assessed. They can be significantly affected by adverse drug reactions (ADRs), leading to reduced QoL.45 The availability of ADR-related QoL data depends on factors such as the medicines and health conditions considered.46 Patients mainly perceive ADR burden in terms of effects on prescriptions, appearance, autonomy, daily life, psychological consequences, distressing experiences, and physical impacts.47,48 Therefore, assessment instruments should explicitly capture patients’ ADR experiences to support improved clinical care.

Tools have been developed to assess spirituality in clinical contexts, consistently showing that strong spiritual well-being contributes to better patient outcomes by reducing distress and anxiety, helping maintain a sense of dignity.41,44,49,50 and facilitating patient decision-making in alignment with personal values and beliefs.51 Furthermore, spiritual support may reduce aggressive treatment49,52 and the use of sedatives and anxiolytics medicines,50 while promoting patient-centered care.53–55

Three outcome measures were commonly used by professionals working in clinical care, clinical audit and research in PC across Europe and Africa: the KPS, followed by the Edmonton Symptom Assessment Scale (ESAS) and the POS.56 These instruments are mainly used for assessing patients’ symptoms/needs, monitoring changes, evaluating care, and assessing family needs. Nevertheless, according to Selman,57 the MQoL, the Measuring the QoL of Seriously Ill Patients Questionnaire, and the POS are the most appropriate multidimensional instruments containing spiritual items for use in culturally diverse palliative populations. Because of this, we did not include ESAS or other tools that were not specifically developed to assess QoL in PC.

“Good death” is an outcome or a process following a period of dying well. Needs and priorities vary among patients and their caregivers, across conditions, over time, and across communities and cultures.16 Factors linked to a peaceful and dignified death impacting QoL, identified in a scoping review, include: not being a burden to the family, maintaining autonomy, having positive final days, protecting others from grief, and being able to make decisions about care until the final days58.59In pediatric patients, recognizing childhood and related needs, such as the opportunity to play, is also essential. Death preparedness contributes to the autonomy and empowerment of patients and families.59

For patients, preparedness involves completing life tasks and unfinished business (e.g., financial, legal, and funeral arrangements), coordinating family affairs, and being treated as a whole person. For caregivers, it also includes affective and behavioral preparation, potentially easing the transition into bereavement. Both patients and caregivers prioritize the patient's desire not to be a burden and to have family presence at the time of death.59 Patients and caregivers prepared for death demonstrated significantly higher QoL scores in the burden domain. This association remained robust in caregivers with low education, low social support, poor resilience, or dysfunctional families,60 suggesting the necessity of including this domain in QoL instruments in PC.

The original QUAL-E was validated for measuring QoL at the end of life with patients with stage IV cancer, congestive heart failure, chronic obstructive pulmonary disease, or dialysis-dependent end-stage renal disease. The instrument included 25 items representing a four-domain structure: life completion, symptoms impact, relationship with health care provider, and preparation for the end of life. It offers additional constructs such as preparation, relationship with the health care provider, and completion. Preparation includes questions regarding patient concern over becoming a burden, reflection on life regrets, and perception of the extent of one's family's preparation for the patient's end of life.36

Measuring the quality of dying can guide care and support for dying individuals and their families, inform clinical decision-making, shape healthcare delivery, support policy development and evaluation, facilitate comparisons across institutions and countries, and track changes over time in settings where endoflife care is delivered.16

Among all quality of dying assessment instruments described in the literature, the Quality of Dying and Death Questionnaire (QoDD) is the most widely studied. The QoDD was translated and cross-culturally adapted into Brazilian Portuguese, demonstrating convergent and known-groups validity and internal consistency in assessing quality of death among cancer patients. It comprises 31 items divided into six domains: symptoms and personal control, preparation for death, family concerns, treatment preferences, whole-person concerns, and moment of death, reflecting experiences during the last seven days of life.61 Consequently, the conceptual redefinition of death and the dying process has become a critical factor in safeguarding patient autonomy over bodily integrity and in optimizing QoL until the end of life.62

Conversely, domains related to functionality, autonomy in activities of daily living, cognitive and social aspects, and healthcare provision are fundamental for QoL assessment from the time of diagnosis.63 Systematic reviews indicate that early PC for cancer patients improves QoL by reducing long-term psychological burden.64

Regarding the assessment of psychometric properties, it is important to underscore that, due to the intrinsic heterogeneity of patients receiving PC, instruments may not be interchangeable. This is attributable to multiple factors previously delineated in the literature, including cultural variables, disease type, disease stage, symptomatology, and other patient-specific characteristics. Consequently, the inherent complexity of this population constitutes a significant challenge for the development of robust instruments capable of accurately evaluating QoL.

In Brazil, two instruments identified in the present study have been validated in cancer patient populations. According to Rugno31 the self-reported version of the POS-BR may serve as a practical tool for assessing QoL in patients with chronic and life-threatening conditions, as well as for evaluating care and screening for signs and symptoms, once its brevity and ease of completion allow for both self-administration and administration by healthcare professionals.

Although our search strategy did not retrieve the Brazilian versions of the Patient Dignity Inventory (PDI-Br) and the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire Core 15-Palliative Care (EORTC QLQ-C15-PAL),65 it is important to emphasize that both have also been validated for Brazilian Portuguese as well. These validations were conducted in populations of patients with advanced diseases receiving PC (PDI-Br) and in patients with metastatic cancer in PC (EORTC QLQ-C15-PAL), respectively.

Understanding the relationship between dignity and psychosocial factors is important for the care of patients with advanced disease at the end of life, particularly in hospital settings, as it may be associated with perceived impairments in QoL and willingness to live. In Brazil, this issue is especially relevant, as the country ranked 79th out of 81 nations in the Quality of Death and Dying (2021)58.65 This ranking places Brazil among the least favorable locations for end of life care, only surpassing countries facing substantial developmental challenges or socio-political crises, such as Lebanon (80th) and Paraguay (81st).

No studies involving pediatric populations were identified. Pediatric PC represents a distinct field in which QoL assessment typically requires age-appropriate instruments and the inclusion of caregiver-reported outcomes. This gap highlights the need for future research focused on the development and validation of QoL measures specifically tailored to children with life-limiting conditions.66 The predominance of evidence from high-income countries, where PC policies are more established and methodological approaches are more mature, may partly explain the scarcity of validated instruments applicable to broader contexts.67

Furthermore, the limited number of studies conducted in low- and middle-income countries may underscore the inequality of PC access for mixed populations.

Artificial intelligence tools were used exclusively for language translation, language editing, and preparation of the graphical abstract. Google Gemini and ChatGPT were used following detailed instructions provided by the authors, without any influence on the scientific content, data analysis, or interpretation of results.

This manuscript has not been previously presented at scientific meetings or conferences.

The authors had full access to all study data, as the School of Pharmaceutical Sciences of Ribeirão Preto provides institutional access to scientific journal subscriptions.

The materials supporting the findings are available in the supplementary materials.

Ivis Vinicius de Oliveira Martins: Writing – review & editing, Writing – original draft, Validation, Methodology, Investigation, Formal analysis, Conceptualization. Igor Massocatto Marques: Validation, Investigation. Felipe Augusto Trinca Alves da Silva: Investigation. Maria Eduarda Marques Trinca: Investigation. Lais Beanucci Coelho: Validation, Investigation. Ana Maria Rosa Freato Gonçalves: Validation. Albert Figueras: Writing – original draft. Maria Olívia Barboza Zanetti: Writing – original draft. Leonardo Regis Leira Pereira: Writing – original draft. Maria Teresa Herdeiro: Writing – original draft. Fabiana Rossi Varallo: Writing – original draft, Validation.

This study was partially funded by São Paulo Research Foundation (FAPESP) PhD scholarship grant no. 2023/13308-5, and CAPES (Coordination for the Improvement of Higher Education Personnel – Brazil), through funding from the Doctoral Sandwich Program Abroad (PDSE-88881.982333/2024-01).