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Assessment of end-of-life care needs among patients with incurable diseases in Bangladesh: A multicenter study

Published online by Cambridge University Press:  11 December 2025

Jheelam Biswas*
Affiliation:
Critical Care Medicine, National Institute of Cancer Research and Hospital, Dhaka, Bangladesh
Mastura Kashmeeri
Affiliation:
Noncommunicable Diseases, International Centre for Diarrhoeal Disease Research, Dhaka, Bangladesh
Md. Shamsudduha Tauhid
Affiliation:
Internal Medicine, Sher-E-Bangla Medical College and Hospital, Barishal, Bangladesh
Nahid Afsar
Affiliation:
Internal Medicine, 250-Bedded General Hospital, Thakurgaon, Rangpur, Bangladesh
Rafsana Rouf
Affiliation:
Oncology, Khulna Medical College Hospital, Khulna, Bangladesh
Sabikun Naher Urmy
Affiliation:
Internal Medicine, Gopalganj Medical College Hospital, Gopalganj, Bangladesh
Salma Ahsan Khanam
Affiliation:
Internal Medicine, Kurmitola General Hospital, Dhaka, Bangladesh
Shima Rani Sarkar
Affiliation:
Palliative Care, Palliative Care Society of Bangladesh, Dhaka, Bangladesh
Nashid Islam
Affiliation:
Palliative Care, Bangladesh Cancer Society and Welfare Home, Dhaka, Bangladesh
*
Corresponding author: Jheelam Biswas; Email: jheelam.biswas@gmail.com
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Abstract

Objective

This study aims to systematically identify patient-reported end-of-life (EOL) care needs of patients with incurable illnesses, and advocate for a person-centered approach to care in Bangladesh.

Method

This cross-sectional study was conducted in four tertiary care hospitals across Bangladesh and included 301 adult patients who had at least one of the following serious and complex incurable conditions: stage III or IV cancer, congestive heart failure (NYHA Class IV), end-stage liver disease, chronic renal failure requiring hemodialysis, stroke, oxygen-dependent pulmonary disease, or any type of dementia. Specific domains of EOL care needs were identified in relation to patients’ functional status using multinomial logistic regression. Differences in EOL care needs across socio-demographic and symptom profiles were analyzed using independent t-tests and one-way ANOVA.

Results

All patients had a Needs Near the End-of-Life Care Screening (NEST-13) score ≥30, indicating a high level of EOL care need. High levels of unmet needs were reported in domains such as doctor–patient communication (89.4%), goals of care (78.1%), spiritual needs (77.4%), and caregiving (66.4%). Patients with longer disease duration (>12 months) and higher symptom burden had significantly higher NEST scores (p < 0.001). Functional status strongly influenced care needs. Multinomial regression confirmed physical care needs (OR = 10.59), caregiving (OR = 3.40), and spiritual needs (OR = 2.81) were most strongly associated with terminal status (PPS ≤ 20%).

Significance of the result

This study reveals an overwhelming burden of unmet EOL care needs among patients with incurable diseases in Bangladesh. The findings emphasize the urgent necessity for holistic, culturally sensitive, and person-centered care, alongside the integration of palliative care into mainstream healthcare services.

Information

Type
Original Article
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This is an Open Access article, distributed under the terms of the Creative Commons Attribution-NonCommercial-NoDerivatives licence (http://creativecommons.org/licenses/by-nc-nd/4.0), which permits non-commercial re-use, distribution, and reproduction in any medium, provided that no alterations are made and the original article is properly cited. The written permission of Cambridge University Press or the rights holder(s) must be obtained prior to any commercial use and/or adaptation of the article.
Copyright
© The Author(s), 2025. Published by Cambridge University Press.

Introduction

Non-communicable diseases (NCDs), including cancer, cardiovascular diseases, chronic obstructive pulmonary disease (COPD), diabetes, and neurological disorders, were responsible for approximately 43 million deaths globally in 2021 (WHO 2024). In Bangladesh, NCDs cause about 67% of all deaths each year. Around 22% of these deaths are considered premature (Islam et al. Reference Islam, Huque and Saif-Ur-Rahman2022). Many of these patients experience high levels of symptom burden, including pain, breathlessness, profound fatigue, coupled with unmet psychosocial and existential needs collectively referred to as serious health-related sufferings (SHS) (Ashrafizadeh et al. Reference Ashrafizadeh, Gheibizadeh and Rassouli2023; Cox et al. Reference Cox, Ashana and Haines2022). The Lancet Commission reported that 61 million people worldwide experienced SHS in 2015, and most of them lived in low-and middle-income countries (LMICs). These individuals experienced a combined total of at least 6 billion symptom-days (Knaul et al. Reference Knaul, Farmer and Krakauer2018). The impact of these unaddressed needs severely compromises the quality of life of these patients (Bužgová and Sikorová Reference Bužgová and Sikorová2015).

End-of-life (EOL) care usually refers to “care concerning the final stage of life and focuses on care of the dying person and their family” (Curtis Reference Curtis2008). It focuses on addressing the physical, emotional, and spiritual needs of these patients, aiming to provide comfort while preserving dignity during their final stages of life (Carey and Cosgrove Reference Carey and Cosgrove2006). Determining the EOL phase is often difficult. However, a negative response to the question “Would I be surprised if this patient were to die within the next 12 months?” is generally considered a prompt for initiating EOL care planning (Twycross et al. Reference Twycross, Wilcock, Toller, Twycross, Wilcock and Toller2021). Globally, EOL care is recognized for its role in improving the quality of life for patients and their families. Previous studies showed that individuals nearing the end of life prioritize relief from pain and distressing symptoms, meaningful communication, emotional reassurance, and spiritual peace (Bužgová and Sikorová Reference Bužgová and Sikorová2015; Emanuel et al. Reference Emanuel, Alpert and Emanuel2001). Now, both palliative and EOL care have become an essential component of healthcare in most high-income countries, offering comprehensive services for both cancer and non-cancer conditions. Through effective symptom management, psychological support, and advanced care planning, these services enhance patient outcomes and help reduce unnecessary, aggressive interventions at the end of life (Dalal and Bruera Reference Dalal and Bruera2017; Lynn Reference Lynn2005).

Low- and middle-income countries (LMICs) account for 80% of the global SHS burden. Between 1990 and 2021, SHS increased by 83% in LMICs, compared to a 46% increase in high-income countries (Knaul et al. Reference Knaul, Arreola-Ornelas and Kwete2025). However, in most LMICs, EOL care services remain underdeveloped, fragmented, and largely focused on cancer (Chandra et al. Reference Chandra, Debnath and Nongkynrih2023). Cultural norms that discourage open discussions about death, limited awareness among the public and healthcare professionals, policy gaps, and regulatory barriers – particularly around opioid availability – further restrict access to appropriate care (Carey and Cosgrove Reference Carey and Cosgrove2006; Kashmeeri et al. Reference Kashmeeri, Islam and Banik2024; Sharma et al. Reference Sharma, Jagdish and Anusha2013). In Bangladesh, EOL care and palliative care are severely limited due to inadequate resources, infrastructure, and trained personnel. Although approximately 600,000 patients require palliative care, fewer than 4,000 have access to these services. Only six comprehensive palliative care programs exist, all located in the capital city (Hossain et al. Reference Hossain, Hasan and Rahman2025). Consequently, patients at the terminal stage of illness often face significant unmet needs in EOL care, including persistent physical symptoms, emotional distress, and spiritual suffering. This is further compounded by a lack of appropriate understanding of their needs and widespread misconceptions about the nature and scope of care required during this terminal phase (Biswas et al. Reference Biswas, Banik and Ahmad2021).

EOL care is broadly a part of palliative care, but differs with patients’ disease trajectory and focuses on specific needs (Curtis Reference Curtis2008). Researchers have identified several key domains of EOL care needs, including physical symptoms such as pain, fatigue, and breathlessness, as well as psychological distress, spiritual concerns, communication, information-sharing, shared decision-making, goal setting, and caregiver support (Ashrafizadeh et al. Reference Ashrafizadeh, Gheibizadeh and Rassouli2023; Emanuel et al. Reference Emanuel, Alpert and Emanuel2001). Identifying these specific care needs of patients nearing the end of life is essential for designing responsive, compassionate, and equitable healthcare services. In the absence of such insight, care often becomes reactive, medically aggressive, and misaligned with the values, preferences, and priorities of patients and their families. To date, no prior study has systematically evaluated the EOL care needs of patients with complex incurable conditions in Bangladesh. By systematically capturing patient-reported needs, this study aims to identify neglected areas of suffering among patients nearing the end of life, promote person-centered care, and support the integration of EOL care into the broader health system of Bangladesh.

Methods

Study design and setting

Step 1 (Linguistic validation of the NEST-13): As there is no tool in Bengali to assess EOL care needs, this step involved the translation of the Needs Near the End-of-Life Care Screening Tool (NEST-13) into Bengali and linguistically validating the translated version. The translation process followed standard forward and backward translation, expert committee review, and cognitive debriefing to ensure linguistic and conceptual equivalence.

Step 2 (Cross-sectional survey): In this step, a cross-sectional survey of the EOL care needs of patients with incurable illnesses was conducted using the linguistically validated Bengali version of the NEST-13 tool. Four administrative divisions of Bangladesh – where palliative care services are currently unavailable – were selected. From each division, one tertiary-level hospital was chosen for data collection. Data collection was conducted at the following healthcare facilities:

  • Sher-E-Bangla Medical College and Hospital (Barishal Division);

  • 250-Bedded General Hospital, Thakurgaon (Rangpur Division);

  • Khulna Medical College Hospital (Khulna Division);

  • Gopalganj Medical College Hospital (Dhaka Division).

Sample criteria: Patients were eligible to participate in both phases of the study if they were aged 18 years or older and had a history of at least one of seven serious and complex medical conditions: stage III or IV cancer, congestive heart failure (New York Heart Association [NYHA] Class IV), end-stage liver disease, chronic renal failure requiring hemodialysis, stroke, oxygen-dependent pulmonary disease, or any type of dementia. To determine whether a patient was nearing the end of life, we applied the surprise question: “Would I be surprised if this patient were to die within the next 12 months?” A negative response (i.e., not surprised) was used as the threshold to prompt formal EOL assessment. Additional inclusion criteria included the presence of a functional deficit, defined as an Eastern Cooperative Oncology Group (ECOG) Performance Status score of 2 or more, indicating the patient was unable to carry out any work activities, including light housework or office work, and may or may not have been capable of self-care. Patients were also required to have had at least two prior unplanned hospital admissions for the management of their condition within the last 6 months and to have never received any form of palliative care or palliative care consultation. Patients with cognitive impairment, defined as a Mini-Mental State Examination (MMSE) score of less than 20, were excluded from the study.

Sample size: In a U.S.-based study, approximately 76% of patients with incurable illnesses reported at least one comfort-related need, as measured by the NEST-13 tool (Cox et al. Reference Cox, Ashana and Haines2022). This proportion was used as the reference value for calculating the sample size for our study.

Formula:

\begin{equation*}n = \frac{{{Z^2}pq}}{{{d^2}}},\end{equation*}

n = sample size; Z = 1.96 for 5% level of significance; d = margin of error; p = 76% (estimated proportion of population)

Calculation:

\begin{equation*}{\text{n}} = \frac{{{{1.96}^2} \times 0.76{\text{ }}\left( {1 - 0.76} \right)}}{{{{0.05}^2}}} = 281\end{equation*}

According to the sample size calculation, the minimum required sample size was 281. Considering 5% non-response rate, and after rounding, the final sample size was 301.

Data collection instruments: The demographic characteristics of the patients were obtained from medical and nursing records and included sex, age, duration of disease, and diagnosis.

To assess the EOL care needs of patients, we used the NEST-13. This validated instrument consists of 13 domains of need: financial, access to care, caregiving, illness distress, physical health, mental health, closeness, spirituality, settledness, purpose, patient–provider communication, information, and goals of care. Each item is scored on a scale from 0 (no need) to 10 (highest need) (Emanuel et al. Reference Emanuel, Alpert and Emanuel2001). Previous studies have defined a threshold score of ≥5 for each item as indicative of need requiring clinical attention (Scandrett et al. Reference Scandrett, Reitschuler-Cross and Nelson2010). A total NEST score of ≥30 was considered a threshold for significant care needs, representing three or more domains of elevated concern. Also total NEST score ≥65 considered as high need of EOL care (Cox et al. Reference Cox, Ashana and Haines2022).

The symptom profile of patients was assessed using the validated Bengali version of the Edmonton Symptom Assessment Scale (ESAS) (Afsar et al. Reference Afsar, Bhuiyan and Alam2023). The ESAS evaluates the severity of nine common symptoms: pain, tiredness, drowsiness, nausea, shortness of breath, appetite loss, depression, anxiety, and overall well-being. Each symptom is rated from 0 to 10; a higher score represents a higher symptom burden (Bruera et al. Reference Bruera, Kuehn and Miller1991). Score ≥5 for each symptom represents clinically significant symptom burden (Li et al. Reference Li, Balboni, Nissim, Cherny, Fallon, Kaasa, Portenoy and Currow2021).

Functional performance and survival status were estimated using the Palliative Performance Scale (PPS), a clinician-rated tool assessing five functional domains: ambulation, activity level and evidence of disease, self-care, oral intake, and level of consciousness (Anderson et al. Reference Anderson, Downing and Hill1996). In this study, PPS scores were categorized into three functional states: terminal/severely ill (PPS ≤ 20%), disabled (PPS 30–40%), and moderate/relatively stable (PPS ≥ 50%) (Harrold et al. Reference Harrold, Rickerson and Carroll2005).

Data collection procedure

Translation and linguistic validation of NEST-13 tool: This step was conducted between November 2024 and February 2025. The Needs Near the End-of-Life Care Screening Tool (NEST-13) was translated into Bengali following standard cross-cultural adaptation procedures (Beaton et al. Reference Beaton, Bombardier and Guillemin2000). Two bilingual medical professionals independently performed forward translations, which were then synthesized into a single version by an unbiased third translator. This was back-translated into English by two independent translators unfamiliar with the original tool. An expert committee – comprising three palliative care specialists, two research team members, and language experts in English and Bengali – reviewed all translated versions (the synthesized translated version and backward translations) to ensure equivalence with the original tool. Cognitive debriefing was conducted among 50 native Bengali-speaking patients to identify any unclear or culturally inappropriate terms. Problematic items were revised based on patient feedback, and the final version was approved by the expert panel without the need for further piloting (Supplementary material 1).

Cross-sectional survey: This step of the study was conducted between March and May 2025. A consecutive sampling method was used to select participants from each of the four participating hospitals. From each hospital, 75 patients were selected for participation.

After selection, informed consent was obtained from all eligible patients before participation. Socio-demographic data were obtained from hospital and nursing records. One trained member of the research team assessed each patient’s functional status using the PPS. Following this, symptom burden and care needs were evaluated through face-to-face interviews conducted by research team members using the Bengali versions of ESAS and the NEST-13 tool. Each interview lasted between 30 minutes and 1 hour, depending on the patient’s physical condition. In the case of very frail patients, multiple visits were required to complete the interview process.

Statistical analysis: All statistical analyses were performed using IBM SPSS Statistics for Windows, version 26.0 (IBM Corp., Armonk, NY, USA). Categorical variables, such as sex and diagnosis, were summarized using frequencies and percentages. Continuous variables, including age, duration of illness, and NEST-13 scores, were presented as means with standard deviations (SD). Differences in EOL care needs based on socio-demographic and symptom profiles were analyzed using independent t-tests and one-way ANOVA, depending on the number of comparison groups.

To identify specific domains of EOL care needs associated with patients’ functional status, a multinomial logistic regression model was applied. All statistical significance was set at p < 0.05, with 95% confidence intervals reported.

Result

Translation and linguistic validation of the NEST-13 tool

No significant language discrepancies were identified during the translation process. However, during cognitive debriefing, one minor issue was noted. Almost 90% patients had difficulty understanding both the wording and the concept of “sense of purpose” in item 6. To improve clarity, the term was elaborated in the final version of the translated questionnaire using a culturally appropriate explanation – “what to do in the future days/with your life” – instead of a direct literal translation.

Assessment of end of life care needs

The mean age of participants was 58.76 ± 15.11 years, with a slight male predominance (58.6%). The most common diagnoses were advanced cancer (26.6%), end-stage COPD (26.2%), and dementia (16.6%). Based on functional status, nearly half (46.1%) of the patients were in a disabled to terminal state. All patients scored ≥30 on the NEST-13, indicating a high level of EOL care needs (Table 1).

Table 1. Participant characteristics (N = 301)

Regarding individual domains, the high EOL care needs was observed in doctor–patient communication (89.4%), followed by setting goals of care (78.1%), spiritual needs (74.4%), caregiving (66.4%), financial (60.1%), information needs (58.8%), physical symptom control (57.5%) and mental health related needs (53.8%). Also, the majority of the patients (86.7%) had a high level of overall EOL care need (Table 2).

Table 2. Domains of care needs (N = 301)

Individual NEST-13 domain score of ≥5 indicates a high level of need for that domain; Overall NEST-13 score ≥65 indicates high level of overall need palliative EOL care.

Significantly higher EOL care needs were observed among patients with longer disease duration (>12 months), and in those with specific diagnoses such as advanced cancer, end-stage liver disease, and stage V renal failure (p = 0.001). Patients experiencing moderate to severe symptoms across various ESAS domains (e.g., pain, fatigue, drowsiness, nausea, anorexia, dyspnea, depression, anxiety) had significantly higher NEST-13 scores (p < 0.001), suggesting greater EOL care needs were associated with more severe symptom burden (Table 3).

Table 3. Association between in the EOL care needs and demographic characteristics and symptom profile (N = 301)

t = Independent t test; a = one way ANOVA test; ESAS score ≥5 considered as trigger threshold for clinician concern; *Post-hoc Tukey test p value < 0.05; Higher NEST-13 score indicates higher need.

Domains of EOL care needs vary across different functional states of patients (Supplementary Table 1). Multinomial logistic regression revealed that several NEST-13 domains were significantly associated with lower functional status. For patients in the terminal state (PPS ≤ 20%), caregiving needs (OR: 3.40; p = 0.034), spiritual needs (OR: 2.81; p = 0.039), and physical needs (OR: 10.59; p < 0.001) were significantly higher compared to those with better functional status. Similarly, patients in the disabled state (PPS 30–40%) had significantly higher spiritual needs (OR: 2.64; p = 0.039), physical (OR: 3.88; p < 0.001), mental health needs (OR: 2.23; p = 0.032) than those with moderate functional impairment. Interestingly, the need for settling goals of care and achieving a sense of purpose was significantly lower among patients with poorer functional status, suggesting that these discussions are more likely to occur – and may be more effective – earlier in the disease trajectory (Table 4).

Table 4. Domains of EOL care need in different functional status by multinomial regression (N = 301)

Reference category is moderate state (≥50 PPS score); higher NEST-13 score indicates higher need; individual NEST-13 domain score of ≥5 indicates a high level of need for palliative EOL care.

Discussion

Our study assessed key domains of EOL care needs in Bangladesh and revealed substantial unmet needs among all participants. Notably, the need score for every participant exceeded the NEST-13 clinical threshold, aligning with global findings from other countries (Dalal and Bruera Reference Dalal and Bruera2017; Grudzen et al. Reference Grudzen, Richardson and Morrison2010; Lee et al. Reference Lee, Park and Lim2019). The most frequently reported high level of unmet needs in this study included doctor–patient communication, goals of care, spiritual support, caregiving, financial concerns, informational needs, physical symptom control, and mental health needs. These findings mirror those of two different studies conducted in the United States and Spain, where physical symptoms, financial challenges, mental health concerns, and access to care were identified as prominent domains of EOL needs (Grudzen et al. Reference Grudzen, Richardson and Morrison2010; López-Salas et al. Reference López-Salas, Yanes-Roldán and Fernández2024). Additionally, previous research has highlighted a broader range of EOL care priorities, including spiritual and social needs, effective communication, respect and emotional support from healthcare professionals, autonomy, decision making, the search for meaning and reconciliation, grief and loss near EOL (Bužgová and Sikorová Reference Bužgová and Sikorová2015; Curtis Reference Curtis2008; Heyland et al. Reference Heyland, Dodek and Rocker2006; Lee et al. Reference Lee, Park and Lim2019; López-Salas et al. Reference López-Salas, Yanes-Roldán and Fernández2024). Together, these findings underscore the complex and multidimensional nature of EOL suffering, especially in low-resource settings like Bangladesh.

In our study found that longer illness duration was associated with increased EOL care needs, particularly among patients with chronic non-cancer conditions. Predicting the disease trajectory in non-cancer illnesses is often challenging and uncertain, which makes it difficult for clinicians to recognize the transition to the terminal phase. As a result, physicians may delay initiating EOL discussions, and patients and their families frequently remain unaware of the need for comfort-focused care. Consequently, care needs often go unaddressed or are only discussed at a very late stage, leading to greater unmet needs among terminally ill patients with non-cancer diagnoses (Curtis Reference Curtis2008). This pattern was also evident in our findings and is supported by previous studies that link prolonged disease duration with higher unmet EOL care needs (Ashrafizadeh et al. Reference Ashrafizadeh, Gheibizadeh and Rassouli2023; Bužgová and Sikorová Reference Bužgová and Sikorová2015; Davison Reference Davison2010; Li et al. Reference Li, Bai and Liu2023; Lim Reference Lim2016). These findings highlight the importance of understanding disease trajectories and tailoring EOL care to the specific needs associated with different conditions.

We also found that patients in the terminal stage (PPS ≤ 20%), reported significantly higher caregiving, spiritual, and physical care needs compared to those with better functional status. This is consistent with existing literature, which has shown that physical and emotional needs become particularly pronounced near the end of life. Symptoms such as pain, dyspnea, and delirium are among the most anticipated and feared experiences for both patients and caregivers during the dying phase, and are often particularly challenging to manage effectively (Lee et al. Reference Lee, Park and Lim2019; Lim Reference Lim2016). We also found that patients with a higher symptom burden reported overall greater EOL care needs. Our finding aligns with previous studies that have identified additional symptoms – such as fatigue, nausea, depression, and anxiety – as being closely associated with increased care needs in the terminal phase. These results underscore the critical importance of comprehensive and effective symptom management as a central component of quality EOL care (Bužgová and Sikorová Reference Bužgová and Sikorová2015; Fitzsimons et al. Reference Fitzsimons, Mullan and Wilson2007).

In our study, spiritual needs were found to be prominent both in patients who were in the terminal phase and those in the disabled state. These needs often center around the individual’s search for meaning and purpose, their relationships with themselves and others, and religious or existential concerns. Spirituality plays an important role in helping patients prepare for death, yet it remains one of the most neglected domains in EOL care (Carey and Cosgrove Reference Carey and Cosgrove2006). Previous studies have shown that lower functional status is frequently associated with heightened spiritual needs and diminished quality of life (Carey and Cosgrove Reference Carey and Cosgrove2006). Similarly, a Canadian study found that patients nearing the end of life place high importance on the opportunity to complete unfinished business, say goodbye, and achieve closure (Ben Natan et al. Reference Ben Natan, Garfinkel and Shachar2010; Heyland et al. Reference Heyland, Dodek and Rocker2006). However, spiritual needs vary significantly across cultural contexts. In Western settings, spirituality is often framed around the search for meaning, identity, and reconciliation in relationships. In contrast, in South Asian cultures – particularly in Bangladesh – spiritual needs tend to be more closely tied to religious beliefs and a desire for closeness to God (Biswas et al. Reference Biswas, Mroy and Islam2024; Edwards et al. Reference Edwards, Pang and Shiu2010). This spiritual orientation contributes to a sense of well-being and peace at the end of life, and patients often expect healthcare providers to acknowledge and address these needs, regardless of the provider’s formal training in spiritual care (Biswas et al. Reference Biswas, Mroy and Islam2024).

Interestingly, our study found that the need for setting goals of care and achieving a sense of purpose was significantly higher among patients with better functional status compared to those in the terminal stage. This may reflect both patient – and provider-related barriers to early EOL discussions. Physicians often report uncertainty about how to initiate conversations about EOL care, particularly with patients who appear clinically stable, and many wait for cues from the patient before broaching such topics (Barclay et al. Reference Barclay, Momen and Case-Upton2011). For example, a study among end-stage renal disease patients reported that fewer than 10% had engaged in discussions about EOL care with their nephrologist in the last 12 months of their lives (Davison Reference Davison2010). A study from the United States similarly reported unmet needs in communication and goal-setting among patients at the end of life (Khandelwal et al. Reference Khandelwal, Curtis and Freedman2017). A review study suggested that patient–physician communication regarding EOL care is often infrequent and of poor quality, leading to missed opportunities for recognizing disease progression and establishing clear goals of care at an earlier stage (Curtis Reference Curtis2008).

Cultural practices may further complicate timely goal-setting. In many Asian and African contexts, the EOL discussion is often withheld from the patient until the final stages of illness (Ayalew et al. Reference Ayalew, Mphuthi and Matlhaba2023; Biswas et al. Reference Biswas, Khanam and Tauhid2025). As a result, patients may lack the necessary understanding of their prognosis, delaying meaningful conversations about goals of care and leading to missed opportunities for alignment with personal values and preferences (Curtis Reference Curtis2008). Yet, evidence shows that early engagement in EOL goal-setting significantly improves both patient and caregiver satisfaction with care, and may increase overall care quality scores by up to 4.8% among individuals with incurable illnesses (Ashwini et al. Reference Ashwini, Boloor and Moolambally2024). Our findings are further supported by the consistently high reported need for effective doctor–patient communication across the majority of the participants. Effective communication is a cornerstone of patient-centered EOL care, enabling shared decision-making, clarification of treatment preferences, goal-setting, and the development of trust between patients and healthcare providers (Brighton and Bristowe Reference Brighton and Bristowe2016; Engel et al. Reference Engel, Kars and Teunissen2023). The high level of unmet need in this domain highlights significant shortcomings in current clinical communication practices.

In addition to the previously discussed domains, significant unmet needs were also reported in caregiving, financial, and informational areas among most participants. The prominence of caregiving needs in this study highlights the urgent need for support systems for families providing EOL care (Ben Natan et al. Reference Ben Natan, Garfinkel and Shachar2010; Heyland et al. Reference Heyland, Dodek and Rocker2006; López-Salas et al. Reference López-Salas, Yanes-Roldán and Fernández2024). Additionally, unmet informational needs may hinder patients from making informed decisions and expressing their preferences regarding EOL care (López-Salas et al. Reference López-Salas, Yanes-Roldán and Fernández2024). These findings underscore the multidimensional nature of suffering at the end of life, which extends well beyond clinical symptoms to encompass psychosocial, economic, and familial challenges (Goni-Fuste et al. Reference Goni-Fuste, Crespo and Monforte-Royo2021). Collectively, these results advocate for a holistic, interdisciplinary approach to EOL care that integrates medical management with psychosocial and spiritual support, especially in low-resource settings like Bangladesh.

Strengths and limitations

This is the first study to translate and linguistically validate the palliative care needs assessment tool, NEST-13, in Bengali. It is also the first to explore EOL care needs among Bangladeshi patients across four divisions who lack access to palliative care services. However, this study has several limitations. Firstly, the cross-sectional design limits causal inference and does not capture changes in care needs over the disease trajectory. Additionally, the study’s focus on tertiary care settings may limit the generalizability of the findings, particularly to rural populations who primarily access healthcare through primary-level facilities. Self-reported data may introduce recall and social desirability bias. Finally, although the Bengali NEST-13 is linguistically validated but further validation of its psychometric properties is necessary.

Conclusion

In conclusion, this study highlights significant unmet EOL care needs among patients with incurable illnesses in Bangladesh, particularly in the areas of care of physical symptoms, spiritual support, communication, goal setting, and caregiving. These needs were influenced by patients’ functional status and the trajectory of their illness. The findings underscore the urgent need for culturally sensitive and comprehensive EOL care strategies that prioritize the early integration of palliative care into the national healthcare system and provide holistic support for both patients and their families – ultimately ensuring dignity, comfort, and improved quality of life during the final stages of illness.

Supplementary material

The supplementary material for this article can be found at https://doi.org/10.1017/S1478951525101120

Data availability statement

All data relevant to the study are accessible in Mendely data (doi:10.17632/np5m8m43yn.2).

Author contribution

Jheelam Biswas: Conceptualization, data curation, methodology, formal analysis, investigation, methodology, resources and software, validation, writing original draft, editing, and review. Mastura Kashmeeri: Conceptualization, formal analysis, funding acquisition, methodology, validation, writing original draft, editing, and review. Md. Shamsudduha Tauhid: Conceptualization, data curation, investigation, project administration, funding acquisition, editing, and review. Nahid Afsar, Rafsana Rouf, Sabikun Naher Urmy, Salma Ahsan Khanam, Nashid Islam: Conceptualization, data curation, investigation, project administration, editing, and review. Shima Rani Sarker: data curation, investigation, project administration, editing, and review.

Funding

This work is funded by the Bangladesh Medical Research Council (BMRC), Dhaka, Bangladesh (Grant No. 149). The funders have no role in determining the study design; collection, analysis, and interpretation of data; writing of the report; and the decision to submit the report for publication.

Competing interests

The authors declare that there is no conflict of interest.

Ethical considerations

Ethical approval for the research (approval no: SBMC/IRB/2024/2157; date: 12/09/2024) was granted by the Ethical Review Committee of Sher-E-Bangla Medical College and Hospital, Barishal, Bangladesh. Before participating in the study, all eligible individuals were asked to provide written informed consent.

Use of AI

The authors used ChatGPT version 5.0 for checking grammar and corrections.

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Table 1. Participant characteristics (N = 301)

Figure 1

Table 2. Domains of care needs (N = 301)

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Table 3. Association between in the EOL care needs and demographic characteristics and symptom profile (N = 301)

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Table 4. Domains of EOL care need in different functional status by multinomial regression (N = 301)

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