Krithika Rao

Background: Around 90% of children with cancer live in low‐ and middle‐income countries (LMICs), with the majority dying of their disease. Despite the need for quality end‐of‐life (EoL) care in LMICs, access and integration remain limited. Quality indicators (QIs) can assess and provide standards for high‐quality care. The aim of this study was to develop QIs for EoL care for children diagnosed with cancer in LMICs. Methods: The QIs were identified and prioritized through a multi‐phase process: (1) literature review identified potential QIs from existing guidelines, standards, and published studies; (2) modified Delphi approach engaged global experts to assess the importance and feasibility of QIs; and (3) prioritization conducted using a Discrete Choice Experiment (DCE) with experts and dot voting prioritization exercise with bereaved family members. Results: From the literature review, 73 potential QIs were identified. Fifty‐six global experts from 27 countries participated in the modified Delphi. Sixty‐four indicators across seven domains were deemed important with 25 identified as both important and feasible. Forty‐one global experts from 23 countries participated in the DCE prioritization and 12 bereaved family members from nine countries participated in the dot voting prioritization. While experts and family members prioritized some indicators similarly (i.e., symptom management), family members placed higher priority on QIs addressing communication and anticipatory guidance. Conclusion: This study describes a robust, context‐specific process which identified QIs for pediatric EoL care in LMICs. Future efforts will pilot and refine the QIs to demonstrate feasibility, sustainability, and impact on care quality. Precis: This study assessed potential quality indicators (QIs) for pediatric end‐of‐life (EoL) care in low‐ and middle‐income countries (LMICs) through a multi‐phase process involving global experts and bereaved families. The findings provide a set of potential QIs to evaluate and improve EoL care for children with cancer in LMICs.

Background: Timely integration of pediatric palliative care (PPC) is recommended alongside disease-directed treatment, yet referrals remain late and inconsistent. Structured screening and provider education may address clinician-level barriers, but evidence from pediatric oncology in low- and middle-income settings is limited. This study evaluated whether an educational intervention for pediatric oncologists was associated with changes in PPC referral practices for children with haematological malignancies screened using the Paediatric Palliative Screening Scale (PaPaS). Methods: We conducted a single-centre quasi-experimental study using a separate-samples pretest–posttest design. Children aged < 18 years with haematological malignancies were screened during August 2022, followed by a multimodal educational intervention for pediatric oncologists in September 2022 and post-intervention screening in October 2022. PaPaS v3 scores ≥ 15 indicated referral eligibility. The primary outcome was documented PPC referral among eligible children. Referral proportions were compared using a two-sided Fisher’s exact test. Results: Among 105 enrolled children (55 pre-intervention; 50 post-intervention), PaPaS eligibility was similar between periods (34.5% vs. 34.0%). Referral among eligible children increased from 15.8% (3/19) before the intervention to 64.7% (11/17) after the intervention (Fisher’s exact p = 0.005; odds ratio 9.78, 95% CI 2.01–47.68; relative risk 4.10, 95% CI 1.37–12.26; absolute risk difference 48.9% points, 95% CI 20.9–76.9). Total PaPaS scores did not differ significantly. Domain 4, Preferences of health professionals, increased, although this clinician-rated domain is susceptible to assessment bias. Conclusion: The educational intervention was associated with a higher frequency of PPC referrals among clinically eligible pediatric oncology patients, despite a stable assessed need. These findings suggest that clinician-related factors may contribute to under-referral and that educational strategies may help address this implementation gap. Larger studies with independent PaPaS assessment, extended follow-up, and evaluation of sustainability are needed. Clinical trial registration: - CTRI/2022/07/044157; registered on 1 July 2022.

Aim: To explore paediatric oncology nurses' perspectives on how supportive and palliative care are understood, delivered, and integrated within routine clinical practice in India. Design: A multicentre qualitative study informed by a constructivist‐interpretivist paradigm. Methods: Twenty‐four paediatric oncology nurses from three tertiary cancer centres in India were purposively recruited. Semi‐structured interviews were conducted during 2023–2024, audio‐recorded, transcribed verbatim, translated where necessary, and analysed using reflexive thematic analysis. Analysis was primarily inductive while sensitised by predefined working definitions of supportive and palliative care. Results: Four interrelated themes were constructed: Clinical Stabilisation and Treatment Continuity; Relational and Communication Work; Embedded Palliative Care; and Emotional Labour. Nurses described continuous surveillance, symptom‐responsive care, communication, navigation, comfort‐focused support, end‐of‐life care, and the emotional work required under resource constraints. ‘Embedded palliative care’ is the researchers' interpretation of practices oriented towards relieving suffering and preserving dignity; participants did not consistently label these activities as palliative care. Conclusion: Nurses described clinical, relational, supportive, and explicitly palliative practices that responded to suffering across the illness trajectory. The findings indicate areas for service development but do not establish effects on patient safety, treatment continuity, distress, or service outcomes. Implications for the Profession and/or Patient Care: Practice considerations include strengthening generalist palliative‐care competence, systematic assessment of symptoms and suffering, family communication and navigation, emotional support for nurses, and timely access to specialist palliative care. These approaches require implementation and prospective evaluation. Impact: The study clarifies how paediatric oncology nurses in three Indian tertiary centres understand and undertake supportive and palliative work, including activities that researchers interpreted as palliative‐oriented even when participants did not use that label. Reporting Method: The study is reported in accordance with the Standards for Reporting Qualitative Research (SRQR). No Patient or Public Contribution: No patients, caregivers, or members of the public contributed to the study design, conduct, analysis, interpretation, or manuscript preparation. Nurses participated as research participants.

Background: In intensive care units (ICUs) in low- and middle-income countries (LMICs), high treatment intensity and out-of-pocket expenditures can lead to a misalignment between delivered care and patients’ values. In 2019, a tertiary hospital in India implemented the BLUE MAPLE program to integrate specialist palliative care (SPC) into routine ICU workflows. We evaluated temporal patterns in program uptake, referral timing, and documentation of decision-making processes following implementation. Methods: We conducted a retrospective, theory-informed evaluation of consecutive ICU patients referred to SPC between Jan 1, 2019, and Dec 31, 2024, using routinely collected clinical and administrative data. We examined trends in referral volume, ICU-to-SPC interval, and documentation of goals of care (GoC), limitation of life-sustaining treatment (LST), and futility. Post-referral outcomes, including mortality and discharge against medical advice (DAMA), were also described. Findings: Among 1,871 patients referred to SPC (mean age 61 years [SD 16·6]; 33% women), treatment intensity at referral was high (71% receiving mechanical ventilation; 58% inotropes). Annual referrals increased from 35 in 2019 to a peak of 611 in 2023, then to 487 in 2024. Median ICU-to-SPC intervals remained short (3–6 days) across years. Documentation of GoC discussions increased steadily over time, while documentation of LST limitation and futility showed a non-linear pattern, with a decline followed by recovery after 2022. Overall mortality was 57·3%, and DAMA occurred in 13·0% of patients without a consistent temporal trend. Interpretation: Integration of SPC into ICU workflows was feasible and sustained over 6 years in a resource-limited setting, and was associated with increased referral volume, timely involvement for most patients, and improved documentation of decision-making processes. In LMIC ICUs, where financial considerations often influence end-of-life care, indicators of decision quality and value concordance may be more informative than utilization metrics alone.

Background: Patients with end-stage kidney disease (ESKD) and acute kidney injury on chronic kidney disease (AKI-on-CKD) experience significant symptom burden and high mortality, yet evidence for structured palliative integration within nephrology remains limited in low- and middle-income countries. Aim: To describe the timing and reasons for referrals from Nephrology to Palliative Medicine, the interventions delivered, and clinical outcomes following referral. Methods: A retrospective cohort study was conducted of all adult patients ( n = 325) referred from Nephrology to Palliative Medicine. Data included demographics, renal diagnosis, dialysis modality, comorbidities, treatment intent, and documented palliative interventions, and were analyzed using descriptive statistics. Results: Mean age was 63.6 ± 14.1 years; 229 (70.5%) were male. Renal diagnoses comprised ESKD (215; 66.2%), AKI-on-CKD (86; 26.5%), and AKI (16; 4.9%). Dialysis modalities included maintenance hemodialysis (194, 59.7%), dialysis for AKI (63, 19.4%), and conservative kidney management (21, 6.5%). Referrals were primarily for GOC discussions (41.5%), followed by pain and symptom management (29.2%) and end-of-life (EOL) care (27.4%). Referrals specifically for conservative kidney management were uncommon (1.8%). Among deaths, 154 (75%) occurred in the hospital. Common triggers for referral included sepsis, multiorgan failure, and decisions to stop dialysis. Conclusion: Palliative care involvement predominantly occurred during acute decline—often related to sepsis, multiorgan failure, or dialysis withdrawal. Although most patients died in the hospital, the high frequency of GOC and EOL discussions highlights the need for earlier, proactive palliative care engagement to support informed decision-making, symptom relief, and care aligned with patient preferences.

Background: Children with cancer face a significant physical and psychosocial burden, highlighting the need for paediatric palliative care (PPC). Global estimates indicate that over 21 million children require PPC. However, in low- and middle-income countries such as India, the need is largely unknown, and access remains limited, necessitating the conduct of this study. Methods: A multicentre, prospective, cross-sectional study was conducted across three tertiary cancer centres in India to assess the palliative care needs of 150 children with cancer and their families using the Paediatric Palliative Screening Scale (PaPaS). The PaPaS tool evaluated five domains, and the total scores were used to stratify the need for PPC. The three participating centres differed in patient flow and the extent of palliative care integration, representing academic and public healthcare settings. Results: Based on PaPaS scores, 49.3% of children with cancer had moderate (secondary) palliative care needs, 36.7% required introduction to palliative care, 11.3% had minimal needs that paediatric oncologists could manage, and 2.7% required palliative care as the focus of treatment. Psychological distress was significantly higher among family caregivers (57%) than in patients themselves (33%). While 91% of families were open to palliative care discussions, clinicians perceived that only 4.7% (7/150) of children would likely benefit from referral to palliative care services. Domain-specific analysis revealed significant correlations between treatment burden, family distress, and overall palliative care needs. Conclusion: There is a significant unmet need for integrated PPC among children with cancer in India, exacerbated by a very small number of them accessing care due to non-referral by oncologists or the unavailability of PPC.

Background: Patients with head and neck cancer (HNC) receiving curative‐intent radiotherapy (RT) or concurrent chemoradiotherapy (CCRT) experience high symptom burden and acute treatment‐related toxicities. Supportive Care (SC) can mitigate these effects; however, the timing and documented triggers for referral are insufficiently characterized in routine practice. Methods: We conducted a prospective, observational longitudinal cohort study (April 2023–March 2024) at a tertiary cancer center in India. Consecutive eligible adults with HNC receiving curative‐intent RT/CCRT were enrolled ( n = 96). Referral timing (days from RT initiation) and documented reasons were extracted from the electronic medical record (EMR). Symptom burden (ESAS‐r [Edmonton Symptom Assessment Scale‐Revised]), quality of life (FACT‐HN), and toxicities (NCI CTCAE v5 [National Cancer Institute Common Terminology Criteria for Adverse Events Version 5]) were assessed at the first SC visit and at five follow‐up visits over 8 weeks. Missing follow‐up outcomes were imputed using the last observation carried forward (LOCF) method. Changes across visits were assessed using the Friedman test, with Kendall's W reported as an effect size. Results: The mean age was 56.35 years (SD 12.83); 70 (72.9%) were men. Half of the cohort lacked a documented referral reason in the EMR. Referrals occurred predominantly during the second and third treatment weeks (mean 19.2 days from RT initiation; SD 12.66; range 0–71 days). The timing of referral correlated strongly with the RT fractions received (Spearman's ρ = 0.942, p < 0.001). Pain improved from a median of 5 to 2 (χ ² = 141.68, p < 0.001; W = 0.30). Anxiety improved from a median of 3 to 2 (χ ² = 54.51, p < 0.001; W = 0.11). Total FACT‐HN improved from a median of 83.7 to 96.7 (χ ² = 79.88, p < 0.001; W = 0.17). Conclusions: SC referrals for HNC patients are commonly reactive during peak acute toxicity periods rather than proactive. Structured referral triggers and improved EMR documentation may enhance timely symptom control and quality of life during curative treatment.

Introduction: Chemotherapy‐related oral complications (CROC), such as oral mucositis (OM), xerostomia and candidiasis, affect 40%–80% of patients with cancer in India, compromising quality of life (QOL) and treatment outcomes. Standardised, evidence‐based, supportive dentistry intervention manuals (SDIM) tailored to local contexts remain limited. This study aims to develop and evaluate the content validity, clinical relevance, clarity and usability of a SDIM for managing CROC in patients with cancer receiving chemotherapy (CT), as assessed by expert dental clinicians. Methods: The manual was developed through a comprehensive review of literature, clinical guidelines and oncology oral care resources, followed by contextual adaptation. It was structured into four domains: (1) basic oral care, (2) soft tissue‐related complications, (3) oral infections and (4) hard tissue complications. Content validation was conducted using a content validity index (CVI)–based approach informed by Lawshe’s framework, complemented by qualitative expert feedback to refine and validate the structured SDIM. Ten purposively selected senior dental experts (at least 5 years of experience) from the Department of Oral Medicine and Radiology evaluated the manual using a 4‐point Likert scale for relevance, clarity, simplicity and necessity. Result: Experts found the manual clinically useful and relevant for managing common CROC, particularly xerostomia, OM and candidiasis. Feedback highlighted the need to simplify for multidisciplinary use, improve structuring for quick reference, and include context‐specific, feasible interventions. Suggestions also included reducing dense text and standardising tables and flowcharts for better usability. Conclusion: The manual was considered relevant, practical and appropriate. Clinical piloting remains a necessary next step before formal implementation recommendations can be made.

Purpose: Head and neck cancer is the seventh most prevalent cancer, with over 660,000 new cases and 325,000 annual fatalities, accounting for 30% of all cancer cases. Chronic cancer-related pain affects 15–75% of patients, with myofascial pain being especially common in those with head and neck cancers, ranging from 11.9 to 44.8%. Surgery and radiotherapy, the primary treatments for these cancers, contribute to myofascial pain development. Additionally, head and neck cancer patients face higher psychological distress, with rates up to 50%. This study estimates the prevalence, topography of the musculoskeletal group, and emotional impact of myofascial pain in terms of depression in patients three months post-treatment, emphasizing early diagnosis for improved quality of life. Methods: We conducted a time-bound cross-sectional observational study using convenience sampling of 120 patients with head and neck cancer who were post-surgery or radiotherapy over a 12-month period from April 2023 to March 2024. Data were collected using structured proforma and validated tools. Descriptive statistics summarized continuous variables, and chi-square tests compared categorical variables. Pearson correlation measured linear relationships, while regression analysis estimated the relationship between pain and explanatory variables. A two-sided p-value of < 0.05 was considered statistically significant. Results: The prevalence of myofascial pain was 68.3% (n = 82), though no statistically significant relationship was found between its occurrence and time since therapy (p > 0.05). The most affected muscle was sternocleidomastoid (55%), followed by masseter (29.2%), trapezius (25.8%), temporalis (15%), levator scapulae (8.3%), posterior cervical (5.8%), and splenius capitis (3.3%). Additionally, 75.8% (n = 91) of participants had depression on PHQ-9, with 85.4% (n = 70) with myofascial pain experiencing depressive symptoms. Pain score and depression in patients with myofascial pain were positively correlated with a value of 0.579 (p-value < 0.05). Conclusion: Myofascial pain is common in patients with head and neck cancer post-treatment with a negative impact on emotional well-being. It primarily affects the muscles involved in the neck and shoulder movements. It is important to identify early and manage the complications to enhance quality of life. Clinical trial registration: The study is registered with the Clinical Trials Registry India and the assigned registration number for this study is CTRI/2023/03/050268 on 02/03/2023.

Advanced care planning (ACP) and advance medical directives (AMDs) are vital for aligning medical decisions with patient preferences, particularly for end-of-life care. The 2018 Supreme Court judgment in India established the legality of AMDs, enabling patients to exercise their autonomy. Recent amendments in 2023 simplified procedural requirements, replacing judicial magistrate approval with a streamlined two-tier medical board system. This article proposes a culturally sensitive and practical 12-step framework for implementing ACP and AMDs in India. A structured and consensus-driven process was undertaken by experts in palliative medicine, neurology, critical care, and geriatrics, supported by key medical organizations. The development process included multiple iterations, public consultations, and feedback from legal and medical stakeholders. The framework integrates legal, ethical, and cultural considerations to address procedural and systemic challenges in ACP implementation. The proposed 12-step pathway focuses on three phases: creating living wills, periodic reviews and updates, and executing AMDs. Key components include initiating discussions, identification and appointment of surrogate decision-makers, ensuring legal compliance through simplified procedures, and providing guidance for withholding or withdrawing life-sustaining treatments. Implementation strategies emphasize public awareness, provider training, and institutional policies to normalize ACP. Simplified legal requirements introduced in 2023 facilitate broader adoption and reduce procedural barriers. This framework provides a practical, culturally relevant model for ACP in India, ensuring patient-centered, ethical, and transparent end-of-life care. By integrating simplified legal procedures and addressing misconceptions through education and policy initiatives, the proposed approach empowers individuals, families, and healthcare providers to make informed decisions, fostering dignity and autonomy in medical care. Damani A, Ghoshal A, Rao K, Nair S, Gursahani R, Simha S, et al. Enhancing Advance Care Planning in India through a 12-step Pathway. Indian J Crit Care Med 2025;29(4):301–307.