Quality of end-of-life care, quality of dying and death, and grief in bereaved family caregivers

Abstract

Background

The World Health Organization approximates that around 56.8 million individuals require palliative care annually, with 25.7 million of them being in the final stage of life. Ensuring high-quality care, particularly towards the end of life, can significantly enhance the quality of dying and death (QODD) for terminally ill patients. This, in turn, may alleviate grief among their loved ones following their passing. This descriptive study seeks to explore the correlation between the quality of end-of-life care (EOLC), QODD, and the experience of grief among bereaved family caregivers.

Methods

A total of 318 participants, the primary family caregivers of patients who died within 3–12 months, were recruited for this study by the purposive sampling method. The instruments used for collecting data included (1) the participant demographic data form, (2) the family APGAR questionnaire, (3) The Family Satisfaction with the End-of-Life Care (4) the quality of dying and death questionnaire (QODD), and (5) the inventory of complicated grief. The data were analyzed by using descriptive statistics, and Spearman rank-order correlation coefficient.

Results

The results showed that bereaved family caregivers had satisfaction with the quality of care and their perceptions of QODD at a moderate level. Bereaved family caregivers had 74.8% of normal grief. The quality of EOLC and QODD had a significant negative correlation with grief in bereaved family caregivers. The quality of EOLC also had a significant positive correlation with the QODD.

Conclusion

Improving the quality of EOLC, can improve the QODD and help bereaved family caregivers cope with grief.

Introduction

The World Health Organization estimates that approximately 56.8 million people, including 25.7 million in the last year of life, require palliative care annually. However, only 14% of those in need currently receive it [1]. Palliative care is a holistic, patient- and family-centered approach that begins at the diagnosis of life limiting illness and continues through to bereavement. It aims to alleviate physical, emotional, and spiritual suffering while supporting both patients and their families in navigating the complexities of dying and coping with grief [2, 3].

Family caregivers (FCs) play a crucial role in end-of-life care(EOLC), but often face significant emotional burdens, particularly grief after the loss of a loved one. Grief is an emotional response to the loss of a significant person especially following the death of a family member or loved one. It encompasses a wide range of emotions, thoughts, physical sensations, and behavioral changes [4, 5]. Bereavement, the period of grieving after a loss, varies in duration and intensity depending on the nature of the loss and attachment to the deceased [6]. While most people adapt within six months to a year, some experience prolonged grief that disrupts daily functioning, known as complicated grief or prolonged grief disorder, which affects about 10% of bereaved individuals [7, 8]. These findings highlight the importance of continued support and effective interventions to support emotional adjustment in bereaved caregivers. Recent psychological interventions, including web-based guided imagery and virtual reality (VR) interventions, have shown promise in helping individuals manage grief and emotional distress [9–12].

Transcendence, often linked to religious and spiritual beliefs, refers to connecting to something greater than oneself and has been associated with peace, hope, and reduced anxiety at the EOL [13]. Studies show that caregivers’ perceptions of symptom control and transcendence during a loved one s’ dying process can effects on their grief [14, 15]. The grief experienced by bereaved family caregivers (FCs) is often linked to the quality of EOL conditions of patients [16], reflecting the feelings and perspectives of FCs who provide care to patients during their terminal stage, with the aim of ensuring a good death [17]. A good death includes physical and psychological comfort, staying at a preferred place, being surrounded by loved ones, and being respected as an individual [18]. In the Thai context, a good death includes elements like physical comfort, psychological and spiritual peace, death preparedness, preferred place for death, and post-mortem care [19, 20]. These interpretations reflect deeply held cultural values, making the concept of a good death culturally sensitive.

Good quality of care, especially at the end-of-life could bring to the good quality of dying and death (QODD), which in turn may alleviate grief in bereaved caregivers [21]. Studies show that care and family support help mitigate grief in bereaved caregivers after a loss [22, 23]. A study of 570 bereaved family caregivers of terminally ill cancer patients revealed that high-quality EOLC in palliative care units improves the quality of death [24]. Conversely, delayed or absent palliative care is associated with poor death preparation [15]. Poor communication between heathcare providers and families can also contribute to complicated grief [25]. Bereaved family members in medical care units reported significantly lower satisfaction with EOLC, particularly in areas like “doctor and nurse care,” “illness management,” “health services,” and “communication” [26]. Holistic care and caregiver religiosity are associated with higher care quality perceptions. Therefore, healthcare providers should focus on improving EOLC and supporting caregivers’ bereavement experiences through modifiable factors [27].

This literature review shows that the quality of EOLC, QODD, may be related to grief in bereaved caregivers. However, research on this relationship is limited. This study aims to explore the relationship between the quality of EOLC, QODD, and grief in bereaved family caregivers of patients with terminal illnesses. Specifically, it seeks to: assess FCs’ perceptions of EOLC and QODD; evaluate the prevalence and intensity of grief among bereaved caregivers; and investigate how perceived quality of care and dying experiences are related to grief outcomes. By identifying these relationships, this study seeks to inform the development of culturally sensitive, holistic care guidelines that can improve the quality of dying and reduce grief in bereaved caregivers.

Methods

Design

A cross-sectional quantitative descriptive design was used to explore the relationship between the quality of EOLC, QODD, and grief in bereaved FCs.

Sample and settings

The study included bereaved FCs of patients with terminal illnesses who had passed away within 3–12 months. FCs were recruited by purposive sampling from two secondary hospitals, a tertiary hospital, and a super tertiary university hospital in the Central part of Thailand using the following inclusion criteria: (1) being at least 18 years old, (2) relationship to the patient with chronic illness as father, mother, sibling, child, spouse, or relative, (3) acting as primary caregiver during the last 10 to 14 days before the patient’s passing, (4) having accessible contact details for telephone communication, and (5) communicate in the Thai language. Conversely, exclusion criteria included: (1) withdrawal during data collection, and (2) inability to be reached by phone one month after questionnaire dispatch. According to Hair, Black, Babin, and Anderson [28], the sample size should be 260 samples. Considering a 40% loss for mail response and sampling error, the sample size was expected to be 365. These four settings have palliative care teams that support patients and families throughout the end-of-life (EOL) trajectory. The teams typically consist of nurses and doctors who have received basic palliative care training. In tertiary and super tertiary university hospitals, specialist doctors and multidisciplinary teams are available to provide palliative care services. The process of EOL care and bereavement support follows a standardized protocol, focusing on patient comfort and comprehensive support for FCs. Bereavement care is initiated after the patient’s death and continues for up to six months. Family caregivers experiencing complicated grief are referred to a psychologist for further support.

Ethical considerations

The study was approved by the Institutional Review Board of the Faculty of Medicine at Ramathibodi Hospital, Mahidol University (COA: MURA2019/496, MURA2020/742, MURA2020/805). Ethical principles were followed carefully using the provisions of the Declaration of Helsinki. All participants were informed about the objectives and procedures, and participation in the study was voluntary. The participants were assured of their confidentiality, and they could withdraw from the study without explanation or consequence. Written consent was collected from all participants.

Data collection

Data was collected from September 2019 through April 2021. A cross-sectional mail-out survey was conducted among bereaved FCs of patients who had passed away in two secondary hospitals (n = 220), a tertiary hospital (n = 70), and a super tertiary university hospital (n = 75). Initially, 365 bereaved FCs were identified as eligible and contacted by mail, with follow-up phone calls. After receiving official approval from the ethical committee, all the objectives and research plans were explained to the palliative care team in each setting, and they asked to cooperate in collecting data by asking whether the FCs of these deceased patients would allow the researcher to contact them. After permission was granted, the researcher called to introduce herself, explained the research objective and data collection procedures, and asked if they would be willing to participate in the study. After the FCs agreed to cooperate, the researchers sent the instruments for collecting data by mail and asked them to return the completed questionnaires within four weeks.

Instruments

The instruments used in this study were as follows.

Section 1

The demographic characteristics of primary caregiver and patient questionnaire was designed by the researcher to elicit data regarding demographic characteristics of the primary caregivers and patients including age of primary caregivers, gender, marital status, educational background, occupation, average monthly income, sufficiency of income, chronic illnesses, relationship with the patients, bonding with the patients, age of the deceased patients, duration of care, preparation for the loss, characteristics of death, received palliative care, received support, experience with loss, setting of patients’ death, and duration after the death of the patients.

Section 2

The Family APGAR Questionnaire [29] translated into the Thai language with back translation by Malathum [30] was used to assess family support of caregivers. The instrument was used under the permission of the developer and translator. Five items in the questionnaire were arranged in a five-point rating scale from 0 to 4 points, with 0 reflecting no satisfaction and 4 indicating the highest level of satisfaction. The total possible scores ranged from 0 to 20 points, with higher scores reflecting a higher level of family support and vice versa. The interpretation of scores was as follows: the scores of 0 to 6 points reflected a low level of family support, 7–13 points indicated a moderate level of family support, and 14–20 points referred to a high level of family support [31]. The questionnaire has a high level of internal consistency, with a Cronbach’s alpha value of 0.91 in the original translation [30] and 0.92 in this study.

Section 3

The quality of end-of-life care was measured with The Family Satisfaction with the End-of-Life Care-2 (FAMCARE-2) [32] translated into the Thai version with back translation [33]. The instrument was used under the permission of the developer and translator. It consisted of 17 items designed to evaluate a family’s satisfaction with palliative care divided into the following four subscales: management of physical symptoms and comfort, provision of information, family support, and patient psychological care. The items were arranged on a five-point Likert scale from 5 − 1—very satisfied, satisfied, neutral, dissatisfied, and very dissatisfied, with a choice of ‘not applicable’ included. As for the interpretation of scores, the possible total score ranged from 17 to 85 points, with higher scores reflecting a high level of the quality of EOLC and vice versa. The questionnaire has a high level of internal consistency, with a Cronbach’s alpha value of 0.94 in the original [33] and 0.96 in this study.

Section 4

The quality of dying and death questionnaire (QODD) developed by Patrick et al. [16] and subsequently translated into the Thai language with back translation [34] consisting of 33 items covering symptoms and personal control, preparation for death, moment of death, family, treatment preferences, and the whole person concerns. Each item required the caregivers to indicate their feelings toward the events, with the scores ranging from 0 to 10 points (0 indicating the terrible experience and 10 reflecting the almost perfect experience). These 31 quality scores are averaged and multiplied by 10 to generate a QODD total score on a scale from 0 to 100. Two items assessed the caregivers’ overall rating before the patients passed away. However, these 2 items were not included in calculating the final scores. The QODD developers [35] have suggested that attention be focused on four latent variables: symptom control, preparation, connectedness, and transcendence. The interpretation of the total scores and each subscale were as follows: 0%-29% reflecting a poor or low level of QODD, 30%-69% indicating a moderate level of QODD, and 70%-100% referring to a good or high level of QODD [15]. The instrument was used under the permission of the developer and translator. The questionnaire has internal consistency (α = 0.86) [34]. In this study, the questionnaire has high internal consistency (α = 0.94).

Section 5

The inventory of complicated grief (ICG) [36] was subsequently translated into the Thai language [37]. The instrument was used under the permission of the developer and translator. The inventory was composed of 19 items. Each item is scored on a 5-point Likert Scale, ranging from zero (indicating “never”) to four (representing “always”), with possible total scores ranging from 0 to 76 points. Higher scores indicated a high level of complicated grief, and vice versa. Moreover, a total score of 25 points or higher reflected complicated grief. The questionnaire has high internal consistency (α = 0.97) [37]. In this study, the questionnaire also has high internal consistency (α = 0.94).

Data analysis

All statistical analyses were performed using the SPSS statistical software package (v.18.0.0). The data were cleaned and coded before being entered into the computer program and a level of statistical significance level of 0.05 was adopted. Descriptive statistics were conducted first to evaluate the socio-demographic data. The initial agreement was tested, and it was found that the variable of the quality of EOLC and grief did not have a normal distribution. Therefore, the Spearman rank-order correlation coefficient was employed to determine the relationship between the quality of EOLC; QODD, and grief in bereaved FCs.

Results

Initially, 365 eligible bereaved family caregivers were identified, of whom 318 returned completed questionnaires, resulting in a response rate of 87.12%. The respondents comprised 179 from two secondary hospitals, 70 from a tertiary hospital, and 69 from a super tertiary university hospital. Subsequently, 47 participants (12.88%) were excluded: five withdrew from the study due to discomfort with the questionnaire, three could not be reached by phone, one participant’s returned questionnaire was lost, and 38 did not return the questionnaires. According to the study findings, most of the subjects, or 72.6%, were female, and their mean age was 48.74 years old (SD 12.49). In addition, 47.8% were married, and 33.3% held a bachelor’s degree. Their average monthly income ranged from 0 to 300,000 baht, with a mean income of 24,649.24 baht (SD 30,124.64). Almost half of them, or 43.1%, had sufficient income with no savings. Regarding chronic illnesses, approximately two-thirds, or 63.8%, of the subjects had no chronic conditions. Hypertension was the most prevalent among those who did, accounting for 19.5% of the total. Regarding their relationship with the palliative patients, 57.9% were children of the patients, with 63.8% reporting a high level of bonding with the deceased patients. The age range of the deceased palliative patients spanned from 4 to 99 years old, with a mean age of 70.89 years (SD 15.22). The duration of care provided by bereaved FCs ranged from 1 to 180 months, with a mean duration of 17.5 months (SD 25.39). Additionally, 73.3% of the patients with terminal illness received palliative care, 68.2% received preparation for the patients’ passing, and 75.2% passed away due to the prognosis of their diseases.

Family support

Satisfaction with family support was found to be at a high level, with a mean score of 15.47 (SD 3.85). When considering each aspect of family support, it was found that the aspect that received the highest mean score was family spending time together during the final days (mean 3.27, SD 0.85), followed by family discussing and solving problems together (mean 3.15, SD 0.85), receiving assistance from family during the time of trouble (mean 3.10, SD 0.93), family expressing love and consideration (mean 3.00, SD 0.89), and accepting caregivers’ need to change or do new things, which received the lowest mean score at 2.96 (SD 0.89).

Quality of end-of-life care

The results indicate that bereaved FCs consistently express high satisfaction with the services provided while caring for patients with terminal illnesses across all aspects. The total possible range for the FAMCARE-2 scale is between 17 and 85. The actual range was from 21 to 85, with a total scale mean of 69.47 (SD = 10.72) and an average item mean of 4.08 (SD = 0.63). Similar satisfaction levels were observed across all four subscales, with all respondents displaying high satisfaction with end-of-life care (EOLC) in each subscale.

Among the subscales, provision of information received the highest mean score (mean 4.14, SD 0.64), followed by family support (mean 4.10, SD 0.63) and management of physical symptoms and comfort (mean 4.09, SD 0.65). The subscale with the lowest mean score was patient psychological care (mean 4.08, SD 0.66) (see Table 1). Additionally, Fig. 1 illustrates the percentage of family caregiver responses for each item regarding the quality of EOLC.

Table 1.

Mean and standard deviation of quality of end-of-life care subscale (n = 318)

Subscale	Mean	SD
Provision of information	4.14	0.64
Meetings with the palliative care team to discuss the patient’s condition and plan of care	4.16	0.80
The way in which the patient’s condition and progress have been explained by the palliative care team	4.14	0.74
Information given about the side effects of treatment	4.13	0.71
Information given about how to manage the patient’s symptoms (e.g., pain, constipation)	4.11	0.72
Family support	4.10	0.63
The way the family is included in treatment and care decisions	4.36	0.64
Availability of the palliative care team to the family	4.12	0.78
The practical assistance provided by the palliative care team	3.97	0.80
Emotional support provided to family members by the palliative care team	3.95	0.79
Management of physical symptoms and comfort	4.09	0.65
The Doctor’s attention to the patient’s symptoms	4.14	0.82
Palliative care team’s attention to the patient’s description of symptoms	4.14	0.77
Speed with which symptoms are treated	4.06	0.86
The way in which the patient’s physical needs for comfort are met	4.05	0.79
The patient’s comfort	4.05	0.76
Patient psychological care	4.08	0.66
The way in which the palliative care team respects the patient’s dignity	4.27	0.75
How effectively the palliative care team manages the patient’s symptoms	4.05	0.75
Emotional support provided to the patient by the palliative care team	4.02	0.78
The palliative care team’s response to changes in the patient’s care needs	3.96	0.72

Fig. 1.

The percentage of family caregiver response in each item of the quality of EOLC

Quality of dying and death

Quality of death and dying as perceived by caregivers referred to the assessment of the events that occurred to the deceased patients 14 days before they passed away, as well as their feelings toward such events. The overall scores and mean scores of each domain of QODD were calculated in this study. The findings showed in Table 2 that the overall QODD was at a moderate level. The mean total QODD score was 61.88 (SD, 16.92), with 35.5% of the sample scoring in the ‘good to almost perfect’ range of the scale (i.e., 70–100), 60.5% of the sample scoring in the ‘neither good nor bad’ range of the scale (i.e., 30–69), and 4% of the sample scoring in the ‘terrible to poor’ range of scale (i.e., 0–29). When considering each domain, it was found that connectedness (mean, 74.54, SD, 19.89) was high, with 69.2% of the sample scoring in the ‘good to almost perfect’ range, whereas the other domains were at a moderate level. The lowest subscale scores were for transcendence (mean, 58.21, SD, 23.57), with 10.6% of the sample scoring in the ‘terrible to poor’ range, and symptom control (mean, 59.19, SD, 21.37), with 8.6% of the sample scoring in the ‘terrible to poor’ range. Figure 2 illustrates the proportion of subscale and total scores falling into the poor, intermediate, and good ranges of the scale.

Table 2.

Descriptive statistics of quality of dying and death in each domain (n = 318)

Domains of QODD	N	Min	Max	Median	Mean	SD	Level
Symptom control	303	0.00	100.00	60	59.19	21.19	Moderate
Preparation	297	0.00	100.00	68	65.06	21.36	Moderate
Connectedness	302	5.00	100.00	75	74.54	19.89	High
Transcendence	301	0.00	100.00	60	58.21	23.57	Moderate
QODD total scale	299	18.21	100.00	62.26	61.88	16.92	Moderate

Fig. 2.

QODD subscale and total QODD score frequencies

Grief

It was found that the total scores of grief ranged from 0 to 67 points, with a mean of 17.27 points (SD 14.32). When considering the scoring criteria, the cut-off for complicated grief was 25 points. In the present study, 238 caregiver participants (74.8%) were considered to have normal grief, while 80 of them (25.2%) had complicated grief (Table 3.). The five items that had the highest mean scores were “Memories of the person who died upset me” (mean 1.88, SD 1.27), “I feel myself longing for the person who died” (mean 1.74, SD 1.47), “I think about this person so much that it’s hard for me to do the things I normally do” (mean 1.68, SD 1.19), “I feel drawn to places and things associated with the person who died” (mean 1.58, SD 1.23), and “I feel disbelief over what happened” (mean 1.17, SD 1.33), respectively.

Table 3.

Number and percentage of normal and complicated grief in family caregivers (n = 318)

Grief	n	%
Normal grief (Scores 0–24)	238	74.8
Complicated grief (Scores ≥ 25)	80	25.2

Relationships between the quality of EOLC, QODD, and grief in bereaved family caregivers

Bereaved family caregivers’ perceptions of quality of EOLC were significantly associated with their grief, EOLC total score (r = − .185, p < .01), EOLC_Symptom (r = − .157, p < .01), EOLC_Information (r = − .145, p < .05), EOLC_family (r = − .173, p < .01), EOLC_Psychology (r = − .183, p < .01). Bereaved FCs who perceived that deceased person received higher quality of EOLC had a lower level of grief. The results also showed that bereaved family caregivers’ perceptions of QODD were significantly associated with their grief, QODD total score (r = − .218, p < .01), QODD_Symptom control (r = − .168, p < .01), QODD_Preparation (r = − .240, p < .01), QODD_Transcendence (r = − .117, p < .05). Bereaved FCs who perceived that deceased person received higher QODD had a lower level of grief.

Bereaved family caregivers’ perceptions of quality of EOLC were significantly positive correlation with their perception of QODD, quality of EOLC total score (r = .312, p < .01), EOLC_Symptom (r = .308, p < .01), EOLC_Information (r = .290, p < .01), EOLC_family (r = .299, p < .01), and EOLC_Psychology (r = .289, p < .01) (Table 4).

Table 4.

Relationships between the quality of EOLC, QODD, and grief in bereaved family caregivers using spearman rank-order correlation coefficient

Factors	1	2	3	4	5	6	7	8	9	10	11
1.Quality of EOLC total score	1.000
2.EOLC Symptom control	0.926**	1.000
3.EOLC Information	0.892**	0.774**	1.000
4.EOLC Family	0.917**	0.809**	0.773**	1.000
5.EOLC Psychology	0.914**	0.781**	0.791**	0.830**	1.000
6.QODD total score	0.312**	0.308**	0.290**	0.299**	0.289**	1.000
7.QODD Symptom	0.245**	0.222**	0.178**	0.252**	0.265**	0.741**	1.000
8.QODD Preparation	0.335**	0.318**	0.348**	0.291**	0.284**	0.817**	0.442**	1.000
9.QODD Connectedness	0.234**	0.233**	0.269**	0.217**	0.221**	0.652**	0.402**	0.521**	1.000
10.QODD Transcendence	0.218**	0.250**	0.172**	0.245**	0.192**	0.748**	0.614**	0.475**	0.437**	1.000
11.Grief	− 0.185**	− 0.157**	− 0.145*	− 0.173**	− 0.183**	− 0.218**	− 0.168**	− 0.240**	− 0.061	− 0.117*	1.000

*p < .05 **p < .01

Discussion

The primary aim of this study was to gain insights into the perceptions of bereaved FCs regarding the quality of EOLC, QODD, and grief. Furthermore, the study sought to explore the potential relationships between the quality of EOLC, QODD, and grief among bereaved FCs of patients with terminal illnesses. The findings revealed that bereaved FCs expressed satisfaction with the EOLC provided during the care of patients with terminal illnesses across all subscales.

The subscale that received the highest mean score was the provision of information, followed by family support, management of physical symptoms and comfort, and patient psychological care. This finding aligns with results from other studies [32, 38], suggesting a consistent reflection of the quality of EOLC received by bereaved FCs. The study revealed that 68.2% of bereaved FCs received preparation for the passing of palliative patients, and satisfaction with family support was notably high, particularly regarding the opportunity for families to spend time together during the final days. This factor likely contributes significantly to overall satisfaction with the quality of EOLC. However, there were three specific areas—practical assistance, emotional support provided to family members, and the palliative care team’s response to changes in the patient’s care needs—where the mean scores were below 4. These findings underscore the importance of improving these aspects to enhance the overall quality of EOLC provided to patients and their families. The previous study [39] found that nurses tend to address the needs of FCs in the complex context of EOLC. The most common activities mentioned were identifying support needs, practical education, support in decision-making about the patient’s treatment, emotional support, and organizing respite care [39]. Therefore, it is important to provide support service when anticipating death to ensure that care is guided by family needs [40].

In terms of the QODD, the overall score was moderate, with a mean total QODD score of 61.88 (SD, 16.92). A significant portion of participants (60.5%) scored within the ‘neither good nor bad’ range of the scale. When examining each domain, the connectedness subscale was reported at a high level, while other subscales were rated at a moderate level. This high level of connectedness aligns with the satisfaction reported for family support, which was found to be high. Notably, the aspect with the highest mean score was families spending time together during the final days, followed by families discussing and solving problems together.

One plausible explanation is that when the patients and family are involved in decision-making about care, healthcare teams provide comprehensive information including benefits and risks, so that they can make decisions about the treatment plan in advance [41]. Another study found that family involvement at the end of life is associated with quality of care indicators including receipt of palliative care consultation and a chaplain visit and a higher likelihood of a DNR order [42]. This made the family members feel that they were part of the care process, so they were satisfied with the care given by the palliative care team. The result from this study showed that the mean score of symptoms control and transcendence subscale was lower than the mean of other subscales. Congruent with another study, it was found that the caregiver rated the lowest QODD subscale scores assessed symptom control and transcendence over death-related concerns [15]. Therefore, health professionals should pay more attention to and focus on controlling symptoms and transcendence care for patients with terminal illnesses.

In the present study, 25.2% of bereaved FCs had complicated grief. This finding is congruent with another study [43] studying 641 bereaved family members who had lost their loved ones for at least six months and the prevalence of possible complicated grief was 24.5%. However, the grief prevalence was more than the report from other studies, which found that an estimated 7–10% of bereaved adults will experience the persistent symptoms of prolonged grief disorder [44, 45]. One plausible explanation is that 57.9% of the participants in this study were the children of the deceased patients, and 63.8% of them had a high level of bonding with the deceased patients, so they felt that the loss was a devasting event in their lives. According to a previous study, 5% of adults bereaved of their parents had heightened grief scores for complicated grief, applied to 10% of the spousal bereaved and 25% of those who had lost children [46]. These results indicated that losing a child can lead to a significantly more traumatic level of grief compared to other family losses. The relational bond with the deceased also played a significant role in the experience of grief and mourning [47]. From the high prevalence of grief, the palliative care teams should identify and implement early intervention for those at risk for complicated grief, the need for additional resources and processes that support them, and integrate palliative care as early as possible to address symptoms and concerns in the patients and their family; it can be helpful for their grief after loss [48].

This study showed a negative correlation between bereaved family caregivers’ perceptions of the quality of EOLC and their grief. Bereaved FCs who perceived that the deceased person received quality EOLC had a lower level of grief. The results also showed that bereaved family caregivers’ perceptions of QODD were significantly associated with their grief. Bereaved FCs who perceived that the deceased person received a QODD had a lower level of grief. In the present study, 73.3% of the patients with terminal illness received palliative care, 68.2% received preparation for the palliative patients’ passing, and 75.2% of the patients passed away due to the prognosis of the diseases. This could be explained by the fact that the quality of EOLC could reduce grief after a loss. According to the concept of Stewart et al. [41], a good process of care such as good caregiving techniques, patient and family involvement in decision-making, sufficient reception of information, and effective communication between the patients and family and the palliative care team members reflect good quality of care, which can be indicated by patients’ satisfaction with care and their quality of life after the loss. When families see a peaceful rather than an intensely suffering patient, they are more likely to hold the false hope that things might get better and could, therefore, get hurt worse by the eventual death. When the bereaved family members can accept their loss and return to their normal condition, it means they have good adjustment, which can reflect quality palliative care. In the last phase of life, if the patients received good quality of care (appropriate symptom management, information and counseling provided, family involvement, and psychological support to both patients and families), the family will feel that the patient has received good care and quality of dying. Then, there will be less grief after the patient dies. So, positive or negative perceptions about care quality and dying and death quality can influence how bereaved FCs adjust to the loss of the deceased person. This finding congruence with other studies found that the quality of care provided to the person at the end of their life and after death care can influence family caregiver’s grief reactions [43, 49] and death quality influences on caregivers’ grief [14, 21, 50].

Moreover, the study also showed that bereaved family caregivers’ perceptions of the quality of EOLC were significantly positively correlated with their perception of QODD. This finding congruence with other studies found that the good quality of EOLC improves the quality of death in terminally ill cancer patients [24, 51, 52]. This means that if the patients received high-quality EOLC care, it would cause good dying and death. Then, if the bereaved FCs perceived that the patient received good care and had a good dying and death which, in turn, is associated with less intense grief reactions in caregivers after the patient’s death [52]. Therefore, the palliative care team should play a role in improving the quality of care, controlling symptoms and suffering, giving information to the patients and families, providing psychological support, and involving the families of terminal illnesses in the planning of care [53].

Conclusions

The finding of this study showed that bereaved FCs were satisfied with the quality of care and their perceptions of QODD at a moderate level. Bereaved FCs had 74.8% of normal grief. The quality of EOLC and QODD had a significant negative correlation with grief in bereaved FCs. The quality of EOLC also had a significant positive correlation with the QODD. The finding holds important implications for both practice and future research, serving as foundational data for planning the provision of palliative care to patients with terminal illnesses and their bereaved FCs, thereby aiding in the effective alleviation of grief within families.

Firstly, there is a clear need to integrate palliative care at the earliest possible stage to alleviate symptoms and enhance the quality of life for both patients and their families. Palliative care teams should focus on providing comprehensive emotional support to family members and promptly respond to any changes in the patient’s care needs. Additionally, families of terminal patients should be encouraged to actively participate in planning care tailored to meet the individual needs and specific circumstances of both the patient and their family. It is crucial to prepare families for the passing of palliative patients by disseminating information as they enter the final stages of the disease, thereby enabling them to cope effectively. Furthermore, efforts should be made to identify and intervene early for those at risk of experiencing complicated grief. This involves providing additional resources, support, and follow-ups after the patient’s passing to facilitate the grieving process and ensure the well-being of bereaved family members.

By its nature, a cross-sectional study faces limitations in capturing changes in patients over time for each variable. So, continuous data collection should be implemented at intervals such as 6, 13, and 18 months following the death of palliative patients, allowing for monitoring of potential occurrences of complicated grief. This study focused on bereaved FCs of patients with terminal illnesses who passed away in specific hospital settings, limiting generalizability to other caregiver populations in different settings. Future studies should employ random sampling to recruit participants from various settings and levels of care to enhance generalizability. Additionally, further research is warranted in diverse contexts such as home care, community hospitals, general hospitals, or hospices, as the characteristics of palliative care may differ across these settings. Such investigations would aid in the continued development of quality palliative care. Although this study found that good quality of EOLC was associated with a higher QODD, and both good EOLC and high QODD could alleviate grief in FCs of terminally ill patients who have passed away. It is important to acknowledge that grief is a multifaceted experience influenced by various factors beyond EOLC and QODD. Other elements, such as personal coping strategies, social support, and cultural differences, could also significantly affect the grieving process. Therefore, future studies should explore additional variables that may contribute to grief following the death of a loved one with terminal illness. Moreover, future research endeavors should include the development and evaluation of intervention programs aimed at preventing complicated grief among bereaved caregivers.

Abbreviations

QODD

Quality of Dying and Death

EOLC

End-of-Life Care

Author contributions

PP: Conceptualisation; methodology; data analysis; project administration; resources; writing and editing; finalized the final version. SC: Conceptualisation; methodology; data analysis; validation; resources; writing and editing; finalized the final version; corresponding author. AS, TJ: Conceptualisation; Methodology; data analysis review; writing review; providing conclusion and recommendation. PJ, KK: Methodology; data collection and data analysis review; writing review; providing conclusion and recommendation. All authors reviewed the manuscript.

Funding

Open access funding provided by Mahidol University. This study has received funding support from the Faculty of Medicine Ramathibodi Hospital, Mahidol University.

Data availability

No datasets were generated or analysed during the current study.

Declarations

Ethics approval and consent to participate

The study was approved by the Institutional Review Board of the Faculty of Medicine at Ramathibodi Hospital, Mahidol University (COA: MURA2019/496, MURA2020/742, MURA2020/805). All participants were informed about the objectives and procedures in this project and completed written consent forms. The participants were assured of their confidentiality and right to withdraw at any time throughout the study.

Consent for publication

Not applicable.

Competing interests

The authors declare no competing interests.