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

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.

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. 2022). 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. 2023; Cox et al. 2022). 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. 2018). The impact of these unaddressed needs severely compromises the quality of life of these patients (Bužgová and Sikorová 2015).

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 2008). 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 2006). 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. 2021). 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 2015; Emanuel et al. 2001). 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 2017; Lynn 2005).

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. 2025). However, in most LMICs, EOL care services remain underdeveloped, fragmented, and largely focused on cancer (Chandra et al. 2023). 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 2006; Kashmeeri et al. 2024; Sharma et al. 2013). 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. 2025). 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. 2021).

EOL care is broadly a part of palliative care, but differs with patients’ disease trajectory and focuses on specific needs (Curtis 2008). 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. 2023; Emanuel et al. 2001). 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. 2022). This proportion was used as the reference value for calculating the sample size for our study.

Formula:

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

Calculation:

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. 2001). Previous studies have defined a threshold score of ≥5 for each item as indicative of need requiring clinical attention (Scandrett et al. 2010). 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. 2022).

The symptom profile of patients was assessed using the validated Bengali version of the Edmonton Symptom Assessment Scale (ESAS) (Afsar et al. 2023). 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. 1991). Score ≥5 for each symptom represents clinically significant symptom burden (Li et al. 2021).

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. 1996). 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. 2005).

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. 2000). 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)

Variables	Frequency (n)	Percentage (%)
Age (mean ± SD)	58.76 ± 15.11
Sex
Men	171	56.8
Women	130	43.2
Diagnosis
Advanced cancer	80	26.6
End stage heart failure	16	5.3
End stage liver disease	41	13.6
End stage COPD	79	26.2
Stage V renal failure	35	11.6
Dementia	50	16.6
Duration of disease (median; IQR)	12 months (1 to 360 months)
PPS level (score)
Terminal state (10–20)	54	17.9
Disabled state (30–40)	85	28.2
Moderate state (≥50)	162	53.8
Need of EOL care
Need of palliative EOL care (≥30 in NEST-13 score)	301	100%

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)

Domains of need	Level	Frequency	Percentage (%)	Mean ± SD
Financial	High	181	60.1	5.8 ± 3.4
	Low	120	39.9
Access to care	High	158	52.5	5.1 ± 2.8
	Low	143	47.5
Closeness	High	151	50.2	4.5 ± 3.4
	Low	150	49.8
Caregiving	High	200	66.4	6.3 ± 2.3
	Low	101	33.6
Distress	High	144	47.8	5.1 ± 3.2
	Low	157	52.2
Spiritual	High	223	74.1	7.5 ± 2.6
	Low	78	25.9
Settledness	High	78	25.9	6.6 ± 2.6
	Low	223	74.1
Finding purpose	High	154	51.2	5.2 ± 2.6
	Low	147	48.8
Physical symptom control	High	173	57.5	5.2 ± 2.3
	Low	128	42.5
Mental health	High	162	53.8	5.9 ± 2.4
	Low	139	46.2
Patient–doctor communication	High	269	89.4	7.8 ± 1.7
	Low	32	10.6
Information	High	177	58.8	6.1 ± 2.8
	Low	124	41.2
Goal setting	High	235	78.1	6.8 ± 1.8
	Low	66	21.9
Overall need	High	261	86.7	78.1 ± 11.6
	Low	40	13.3

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)

		Total NEST score
Variables		Mean	SD	p value
Demographic and disease related variables
Sext	Men	77.67	12.07	0.484
	Women	78.62	11.01
Disease durationt	≤12 months	75.88	11.09	0.001
	>12 months	81.31	11.65
Co-morbiditiest	Present	77.64	11.91	0.382
	Absent	78.86	11.07
Diagnosisa	Advanced cancer	80.51*	10.68	0.001
	End stage heart failure	79.06	12.53
	End stage liver disease	79.54*	9.83
	End stage COPD	78.34	11.98
	Stage V renal failure	79.06*	12.94
	Dementia	71.58	10.68
Symptom profile by ESAS
Paint	Mild	76.62	11.01	0.001
	Moderate to severe	83.69	12.25
Fatiguet	Mild	73.99	10.76	0.001
	Moderate to severe	81.55	11.20
Drowsinesst	Mild	76.79	10.69	0.001
	Moderate to severe	84.85	13.85
Nauseat	Mild	77.08	11.37	0.001
	Moderate to severe	82.85	11.70
Anorexiat	Mild	75.08	11.66	0.001
	Moderate to severe	80.55	11.01
Dyspneat	Mild	76.89	11.01	0.005
	Moderate to severe	80.30	12.43
Depressiont	Mild	73.15	10.34	0.001
	Moderate to severe	82.79	10.81
Anxietyt	Mild	72.27	9.55	0.001
	Moderate to severe	82.38	11.14
Wellbeingt	Better wellbeing	78.36	11.79	0.419
	Low wellbeing	77.02	10.92

^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)

					95% CI for OR
		B	p-Value	OR	Lower bound	Upper bound
Terminal state (PPS ≤ 20)
	Financial need
	High	.201	.710	.818	.283	2.363
	Low	Reference
	Access to care
	High	.338	.507	1.402	.517	3.800
	Low	Reference
	Caregiving need
	High	1.223	.034	3.398	1.096	10.531
	Low	Reference
	Illness distress
	High	.148	.705	.862	.400	1.858
	Low	Reference
	Spiritual
	High	1.033	.039	2.809	.921	8.564
	Low	Reference
	Purpose
	Low	.572	.148	1.772	.817	3.846
	High	Reference
	Physical need
	High	2.360	.000	10.592	4.594	24.420
	Low	Reference
	Mental
	High	.383	.389	1.467	.613	3.509
	Low	Reference
	Doctor patient communication
	High	.333	.636	1.395	.351	5.542
	Low	Reference
	Information need
	High	−.217	.575	1.243	.582	2.655
	Low	Reference
	Goals of care
	High	−.203	.666	.816	.325	2.051
	Low	Reference
Disable state (PPS 30–40)
	Financial need
	High	.258	.052	.384	.152	.967
	Low	Reference
	Access to care
	High	.532	.251	1.702	.687	4.218
	Low	Reference
	Caregiving need
	High	.401	.291	1.494	.709	3.145
	Low	Reference
	Illness distress
	High	.050	.878	.951	.502	1.803
	Low	Reference
	Spiritual need
	High	.971	.039	2.641	1.049	6.647
	Low	Reference
	Purpose
	Low	.751	.026	2.118	1.095	4.096
	High	Reference
	Physical need
	High	1.355	.000	3.877	1.981	7.586
	Low	Reference
	Mental
	High	.800	.032	2.225	1.071	4.620
	Low	Reference
	Doctor–patient communication
	High	−.549	.275	.578	.216	1.548
	Low	Reference
	Information need
	High	−.123	.708	.884	.464	1.685
	Low	Reference
	Goals of care
	High	−.907	.017	1.404	.191	.852
	Low	Reference

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 2017; Grudzen et al. 2010; Lee et al. 2019). 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. 2010; López-Salas et al. 2024). 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 2015; Curtis 2008; Heyland et al. 2006; Lee et al. 2019; López-Salas et al. 2024). 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 2008). 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. 2023; Bužgová and Sikorová 2015; Davison 2010; Li et al. 2023; Lim 2016). 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. 2019; Lim 2016). 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 2015; Fitzsimons et al. 2007).

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 2006). Previous studies have shown that lower functional status is frequently associated with heightened spiritual needs and diminished quality of life (Carey and Cosgrove 2006). 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. 2010; Heyland et al. 2006). 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. 2024; Edwards et al. 2010). 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. 2024).

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. 2011). 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 2010). 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. 2017). 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 2008).

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. 2023; Biswas et al. 2025). 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 2008). 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. 2024). 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 2016; Engel et al. 2023). 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. 2010; Heyland et al. 2006; López-Salas et al. 2024). Additionally, unmet informational needs may hinder patients from making informed decisions and expressing their preferences regarding EOL care (López-Salas et al. 2024). 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. 2021). 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.

Supporting information

Biswas et al. supplementary material 1

Biswas et al. supplementary material

Biswas et al. supplementary material 2

Biswas et al. supplementary material

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.