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Abstract
Objective To assess awareness and attitudes towards engaging in advance care planning (ACP) and their relationship with demographic, socioeconomic and religiosity factors among Lebanese middle-aged to older-aged adults in primary care.
Design A cross-sectional survey study.
Setting Tertiary referral hospital in Beirut, Lebanon.
Participants A total of 215 middle-aged to older-aged adults.
Results Out of 215 participants, 18.6% of participants knew about ACP; 94% favoured truth-telling; 87.4% favoured healthcare autonomy; 77.2% favoured documenting their own health values and preferences; and 29.3% were willing to undergo life-prolonging interventions. Among participants who were aware of ACP, 67.5% preferred ACP documentation and 85% had negative attitudes towards life-sustaining interventions. Women were more aware about ACP than men. Those who were willing to undergo life-prolonging interventions were found to be men and had higher religiosity scores.
Conclusion Large deficit in ACP awareness was evident despite the high preference for healthcare autonomy. Medical and public health efforts should strive to enhance patients’ ACP awareness and engagement in ACP while considering factors relevant to gender, culture and religiosity.
- adult palliative care
- primary care
- geriatric medicine
Data availability statement
Data are available on reasonable request. The data include deidentified participant data that is available upon request from the corresponding author Dr. Martine Elbejjani (ORCID: 0000-0002-5035-0370).
This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/.
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Strengths and limitations of this study
This is the first study to provide data that addresses gaps in the literature regarding advance care planning (ACP) among middle-aged to older-aged adults visiting a primary care setting in the Middle Eastern region.
The data were based on a small convenience sample of participants who have access to a large private academic medical centre in the capital which limits the generalisability of our findings.
The instrument used to assess the awareness and attitude towards ACP had not yet been validated in the Lebanese context and may have failed to accurately measure several constructs such as healthcare autonomy since the perception of patient autonomy and decision making may differ among cultures.
Introduction
Advance care planning (ACP) is a process aiming to support adults at any age or stage of health in receiving medical care that is aligned with their personal values, goals and preferences.1 2 One important component of ACP is to help people in their healthcare decisions and wishes for their end of life (EOL) care in the event their decision-making capacity becomes impaired.3–5 It involves communication between patients, healthcare providers, family members and care partners to plan ahead for medical care options and preferences at EOL.3 This process may lead to ongoing discussions and/or documentation of an advance directive, which reflects patients’ wishes for future medical decisions if they become unable to make such decisions.5 6
As we encounter an ageing population, an increase in chronic medical conditions and terminal illnesses, engagement in ACP has important advantages for ensuring patient-centred care and improved EOL care quality. ACP enables improved EOL communication, documentation of care preferences, selection of environment during death and discussion of healthcare costs and expenditures and resource/savings allocation.7 8 ACP in EOL care has been found to reduce unnecessary medical interventions, prevent hospital admissions and increase the use of hospice and palliative care.7 9 It is also associated with reduced suffering and greater satisfaction for both patients and family members who also benefit from experiencing lower levels of stress, anxiety and depression.7 10
Despite the increasingly recognised importance of ACP, previous studies have shown that both patients and healthcare professionals face barriers in engaging in ACP which may contribute to the low completion rate of advance directives in general and specific patient populations like those in primary care.11–13 Primary care physicians are well placed to facilitate and initiate ACP discussion given their role in care coordination of chronic and terminal illnesses care and their close and longer-term relationship with their patients; however, the number of patients who are actually engaged in ACP remains low.14 One key barrier among patients is the lack of knowledge and negative perceptions regarding ACP.15 16 Therefore, determining patients’ knowledge and attitudes towards ACP is instrumental for the development of effective strategies to facilitate EOL care discussions and decision making and promote public awareness regarding ACP especially in primary care settings.11 17 18 Cultural factors and values also influence patients’ attitude towards discussing serious illness and willingness to participate in ACP.19 20 Indeed, prior research has shown that engagement in ACP and completing advance directives, as well as their barriers and facilitators, vary across populations and ethnic groups.21–23 Notably, several studies also show that religiosity plays an important role in ACP preferences, with studies reporting that individuals with greater religiosity are less likely to engage in ACP and complete advance directives and less willing to forego life-sustaining treatments at EOL.24–26 However, to date, data on ACP knowledge and preferences are scarce in Middle-Eastern countries and the influence of religious factors—which play a central role in Middle-Eastern communities—on these preferences are largely understudied.27
In Lebanon, the population is experiencing a fast rate of ageing where adults over the age of 65 are expected to constitute 31.2% of the population by the year 2050.28 Similarly, there is an increase in the prevalence of chronic and terminal illnesses which emphasises the need for promoting ACP across the continuum of care in the country.29 30 Lebanon is also a religiously diverse country with both large and diverse Muslim and Christian communities, and where religion plays an important role in people’s lives.27 31–35 In addition, the country has frequently endured economic instability imposing important socioeconomic constraints on peoples’ livelihood including their healthcare. To date, there is a paucity of data on the awareness about ACP and preferences for EOL care in the Lebanese population.
This study aimed to assess the awareness and attitudes towards ACP among Lebanese adult patients visiting a primary care centre and to evaluate whether awareness and attitudes are related to demographic, socioeconomic and religiosity factors. To provide further insight into ACP preferences in this population, we also assessed whether dementia knowledge and attitudes towards people with dementia are associated with ACP awareness and attitudes, evaluating how people’s knowledge and perceptions of this severely incapacitating illness was linked to ACP.
Methods
Study design, setting and participant recruitment
This is a cross-sectional study in which participants were recruited as part of a larger survey conducted in 2019 that included two components: (1) investigating the knowledge and attitudes of patients towards Alzheimer’s Disease and Related Dementias (ADRD) using the Alzheimer’s Disease Knowledge Scale (ADKS) and (2) investigating knowledge and attitudes towards ACP. Participants aged 45 years and older with no severe uncorrected hearing impairment (no severe hearing impairment or participants with impairment but having or using hearing aids) or visual impairment or aphasia were approached in the primary care centre’s triage area at the American University of Beirut Medical Center, Beirut, Lebanon. Participants’ recruitment occurred during clinic hours on both weekdays and weekends. Participants completed a standardised interviewer-based questionnaire that was administered by trained data collectors. All participants were assured that their participation would be voluntary and anonymous and would not affect the health services provided to them. All participants provided written informed consent. In total, 215 participants completed the study questionnaire.
Patient and public involvement statement
Participants were not involved in the design, or conduct, or reporting, or dissemination plans of this research.
Measurements
The study questionnaire included two sections. The first section included sociodemographic characteristics of the participant; age (years), gender (man/woman), marital status (married/ not married), educational attainment (lower than university degree/at least a university degree), current employment (yes/no), monthly household income (lower: ≤2 million Lebanese pounds (LBP)/ high: LBP 2 million or >US$1300) and current smoking status (yes/no). The second section was based on a previously published 5-item questionnaire that evaluated participants’ awareness and attitudes towards ACP: ‘In case you were diagnosed with cancer or Alzheimer’s disease, do you want to hear the real news regarding your own condition from the physician (Q1)?’; ‘Would you prefer to make your own healthcare decisions (Q2)?’; ‘Have you ever heard of an Advance Care Planning (Q3)?’; ‘Do you want to document your own values and preferences related to your health and treatment options so that it will be respected in case you become seriously ill (Q4)?’; ‘Are you willing to endure specific life-prolonging interventions (such as chronic ventilator and feeding tube) to avoid death when faced with irreversible conditions (Q5)?’.36 The first two questions aimed to assess participants' attitudes towards truth-telling (disclosure of diagnosis and prognosis about patients’ medical condition from physician) and healthcare autonomy. Question 3 evaluated participant’s awareness about ACP, question 4 related to engagement in and preferences towards ACP, and question 5 assessed participants’ attitudes towards end-of-life care.36 Participants were first asked questions 1, 2 and 3. These questions required a response of ‘yes’ or ‘no’. For those who were not aware of the concept of ACP (ie, answering ‘No’ to question 3), the interviewers explained the concept before moving on to asking questions 4 and 5. The English version of the questionnaire was translated into Arabic by a professional translator with input and feedback from the research team; the ACP questionnaire is presented in online supplemental table 1.
Supplemental material
Given the importance of religiosity in the Lebanese culture and in shaping one’s perception of the causes and consequences of disease in general and of ACP and EOL care in particular,24 25 27 we assessed religiosity indicators using the Duke Religion Index (DUREL), translated into Arabic. The DUREL measures three dimensions of religiosity: The organisational item measures frequency of attendance at religious services (1: never, 2: once a year or less, 3: a few times a year, 4: a few times a month, 5: once a week, 6: >once a week); the non-organisational item assesses the frequency of private religious activities such as prayer or meditation (1: rarely or never, 2: a few times a month, 3: once a week, 4: 2 or more times a week, 5: daily, 6: >once a day). The organisational and non-organisational religious activities items each generate a score from 1 to 6 with a higher number indicating a higher frequency of religious activities. Detailed frequency distributions of the DUREL religious activity items in the sample are presented in online supplemental table 1. Intrinsic religiosity is measured with three items that ask about the agreement with statements about ‘experiencing the presence of the divine’, ‘allowing religious beliefs to lie behind one’s whole approach to life’, and ‘trying hard to carry religion over into all other areas of life’ (scored from 1: definitely not true to 5: definitely true). The intrinsic religiosity dimension is a sum of the three intrinsic religiosity items with higher scores indicating higher intrinsic religiosity.37
In an additional analysis, we assessed whether ADRD knowledge, attitudes towards people with dementia, and having a family or a friend with dementia and/or memory problems were related to awareness and attitudes towards ACP. The motivation for this analysis was to provide more insight into factors related to ACP, given the paucity of data in the Lebanese population. As detailed elsewhere,38 ADRD knowledge was assessed using the ADKS which consists of 30 true/false items.38 39 For each participant, the total knowledge score was computed by summing the 30 items of the ADKS with each correct answer being one additional point, thus higher scores indicate higher knowledge. Attitudes towards people with dementia were evaluated using an eight-item questionnaire,40 with a positive attitude answer for each item scored as one point; these items were summed to obtain a total score ranging from 0 to 8, with higher values indicating more positive attitudes towards people with dementia.39 40 Through medical and language translation and adaptation, the research team generated Arabic versions of the ADKS and the dementia-related attitudes questionnaire.38 Participants also reported whether they had a family member or a friend diagnosed with dementia and whether they had a family member or friend who had severe memory problems that were not diagnosed (yes/no); including the latter category aimed to capture potential experiences with dementia in participant’s social network that did not receive proper diagnosis.38
Statistical analysis
ACP items were described individually in percentages. We assessed whether awareness about ACP (item 3) was associated with the perception items (items 1–2, 4–5) using χ2 tests. Using χ2 tests for categorical variables and independent t-test for continuous variables, we evaluated whether demographic, socioeconomic and religiosity factors were different across each of the five ACP items. Using Fisher’s exact test for comparisons of categorical variables produced similar conclusions as the χ2 tests. All analyses were performed with the SAS statistical package (V.9.4; SAS Institute) and SPSS Statistics V.24 (SPSS). All results were considered statistically significant at p<0.05.
Results
Sociodemographic characteristics
Characteristics of the 215 participants are presented in table 1. The mean age was 58.6 years (±9.6), 58.1% were female, 82.5% were married, 42.8% had higher educational attainment, 59.1% were employed and 48.8% had a monthly household income of more than LBP2 million (~>US$1300).
Characteristics of participants (n=215)
Religiosity-related variables
The average DUREL scores were 3.0 (SD=1.8), 4.4 (SD=1.8) and 12.3 (SD=3.2) for the organisational religious activities, non-organisational religious activities and intrinsic religiosity, respectively.
Awareness and attitudes of participants towards ACP
In this sample, 18.6% of participants had heard of ACP. Regarding ACP attitudes and preferences, 94% of participants reported that they would like to hear the real news regarding their own condition from the physician and 87.4% reported that they prefer to make their own healthcare decisions. The majority (77.2%) reported that they would want to document their own values and preferences regarding their health and treatment decisions to be respected in case they become seriously ill and 29.3% reported being willing to endure specific life-prolonging interventions (such as chronic ventilator and feeding tube) to avoid death when faced with irreversible conditions (figure 1 and online supplemental table 1).
Awareness and attitudes towards advance care planning (ACP) among Lebanese primary care patients, in the total sample and among those who have heard and those who have no theard about ACP, n=215. Bar charts present the proportions of yes answers to each item. P values of χ2 tests comparing proportions of ACP preference and perception items Q1, Q2, Q4, Q5 between participants who have heard of ACP and those who have not, respectively: 0.13, 0.59, 0.09, 0.03.
Figure 1 also presents the distribution of ACP attitudes and preferences among participants who have heard of ACP and those who have not. Participants who have heard of ACP had a higher preference for not going through life-prolonging interventions when faced with irreversible conditions (85% vs 67.1% among those not heard of ACP; p value of χ2 test comparing these two groups=0.03). These two groups were similar with regards to preferences for knowing their medical diagnosis (p=0.13), making their own health decisions (p=0.59) and for documenting healthcare preferences (p=0.09).
Sociodemographic and socioeconomic factors and ACP
There were statistically significant gender differences in awareness about ACP as well as attitude towards EOL care interventions: Women had higher ACP awareness (24.2%) than men (11.2%) and were less (24.2%) willing to endure specific life-prolonging interventions (such as chronic ventilator and feeding tube) than men (37.1%; table 2).
Bivariate analysis of sociodemographic characteristics and religiosity scores associated with each question of the ACP questionnaire (n=215)
There were no differences in ACP knowledge and attitudes across age and marital status, education, income and employment categories (table 2).
Religiosity and ACP
There were differences in religiosity scores across ACP preferences. Participants who were willing to endure life-prolonging interventions had higher religiosity scores than those who were not (specifically they had higher means scores of non-organisational religious activities=4.9 (1.5) vs 4.2 (1.9), t-test p=0.01 and intrinsic religiosity=12.9 (2.6) vs 12.1 (3.4); p=0.09); participants who reported no preference for documenting their healthcare values and options also tended to have higher religiosity scores (mean scores for intrinsic religiosity=13.1 (2.7) vs 12.1 (3.3); p=0.1 and organisational religious activities (3.3 (1.6) vs 2.9 (1.8); p=0.1 (table 2)).
Online supplemental table 2 presents the detailed distribution of categories of frequency of engagement in non-organisational and organisational religious activity and the ACP items and shows similar patterns of results, with a higher frequency of non-organisational religious activity among participants willing to endure life-prolonging interventions and among participants reporting no preference for healthcare autonomy; participants reporting no preference for ACP documentation also tended to have higher frequency of engagement in organisational religious activity.
Dementia-related knowledge and attitudes and ACP
In additional analysis, we assessed whether ADRD knowledge and attitude towards people with dementia were related to ACP awareness and attitudes. Overall, the mean dementia knowledge score was 18.7 (±3.1) and the mean attitude score towards dementia was 5.8 (±1.6) indicating low to moderate knowledge about ADRD and positive attitudes towards people with dementia. More than half (56.4%) of participants had a family member or friends with dementia or memory problems: 27% had a family member with dementia and 15% had a friend with dementia, while 29% of participants had a family member and 17% had a friend with severe memory problems (online supplemental table 3).
Participants preferring to document their healthcare values and preferences had significantly higher ADRD knowledge (19.1 (3.0) vs 17.2 (3.2); p≤0.0001; table 3). There was a significant difference in willingness to endure life-prolonging interventions between those who had a family member/friend with dementia/memory problems and those who did not ((22.9% vs. 37.4% willing, respectively;p=0.03; table 3). Attitudes towards people with dementia were not different across the ACP items, except for a trend for participants who have heard of ACP to have more positive attitudes towards people with dementia (attitude mean scores among those aware and not aware of ACP, respectively: 6.2 (1.2) vs 5.7 (1.6); p=0.09).
Bivariate analysis of dementia-related variables associated with awareness and attitudes towards ACP (n=215)
Discussion
To the best of our knowledge, this is the first study to investigate the preferences and attitudes towards ACP among middle-aged to older-aged participants attending primary care in Lebanon. Our findings showed a high preference for healthcare autonomy in this sample despite a significantly low level of awareness regarding ACP, motivating future efforts to raise awareness about ACP and to integrate it into patients’ care plans. Our findings revealed that women were more aware of ACP and less willing to undergo life-prolonging interventions when faced with irreversible conditions compared with men. Religiosity was also related to attitudes towards ACP, with participants with higher religiosity scores showing higher preference for life-prolonging interventions and lower preference towards documenting their healthcare values and decisions. Participants with higher knowledge, positive attitudes and social experience related to ADRD showed a higher preference for ACP documentation and were less willingness to endure life-prolonging interventions in EOL.
The Lebanese society is known to have a family-oriented culture where decisions, including healthcare, are made in conjunction with other family members which potentially lessens the value of autonomy.41 42 However, most of the participants in our study favoured truth-telling, healthcare autonomy and making their own healthcare decisions, suggesting an attitude that favours active participation in care management; this is in line with findings from another study that showed that Lebanese patients prefer taking part in the management of their own treatments.43 These findings that Lebanese adults show preference towards a more engaged and independent decision-making process can be explained by the increased accessibility and advancement in education and technology.44
Our study revealed a large deficit in knowledge about ACP, which can be attributed to several reasons. While ACP is widely practised in Western societies, the concept is still relatively new in the Middle Eastern region and major differences exist between this region and Western countries with regards to advance directives, decision making, life support, religious and cultural perception of palliative care, and ACP.21 44 45 For example, the Lebanese code of medical ethics still lacks clarity on the concept of advance directives and life-sustaining medical treatment. Consequently, ACP discussions might not be commonly practised by physicians due to the absence of clear guidelines on how to implement a patient’s will in the event of becoming ill or hospitalised, which in turn explains the low level of awareness about ACP among patients. Yet, despite not formally knowing about ACP, our sample showed elevated preferences towards documenting their healthcare values and options and to make their own healthcare decisions. Previous studies also revealed patients’ preferences towards discussing advance directives early in the patient–physician relationship.46 In countries like the USA, UK and France, ACP discussions are always raised in outpatient settings and tailored based on patient’s preferences whereas, in Lebanon, palliative care for instance is only initiated for a patient if all other means of curative treatments have failed regardless of whether patients’ wishes have been documented before illness.45
While the majority of the participants did not opt for life-prolonging interventions, those who have heard of ACP were less willing to opt for such interventions than those who have not heard of ACP. This finding is consistent with previous studies that showed that ACP influences the prevention or reduction of the use of life-sustaining treatments.8 9 An earlier study conducted in a Lebanese sample reported that patients and their families tend to opt for treatments that prolong life, even if that means suffering from severe physical and psychological pain.44 Preferences for life-sustaining interventions also differ based on social influences, cultural and religious beliefs. In our sample, women were less likely to be willing to endure life-prolonging treatment than men; this finding was reported in other populations and is thought to be probably due to women’s perceptions of these measures as a burden on their future caregivers (most of the time it is their adult children) and wanting to relieve them from this responsibility.47–49 Meanwhile, those who reported willingness to endure life-prolonging interventions had higher religiosity scores, in line with previous studies on religion, EOL decision making and ACP where patients with higher religious beliefs were more likely to choose life-long measures.50–52 This relationship was observed with higher intrinsic religiosity and engagement in non-organisational religious activity; lower preference for ACP documentation was also related to higher intrinsic religiosity. This is in line with other reports finding that specific aspects of religiosity relate differently to ACP; for example, higher religious belief was inversely associated with advance directive completion, whereas higher attendance of religious services was positively associated with directive completion.24 Together, these findings could reflect the importance of religious beliefs as well as the notion that individual religious activity may be a way of coping with illness and stress and a response to potential adverse health consequences37; similarly, they could be reflecting a possibly better health status and potential positive social and community benefits of attending religious services. Notably, our sample had elevated religiosity scores, particularly for non-organisational religious activities and intrinsic religiosity, warranting further considerations and investigations of the role of religious and personal beliefs in ACP discussions in this population.
As for dementia-knowledge-related factors, participants who had heard of ACP and had favoured healthcare autonomy had more positive attitudes towards people with dementia and higher dementia knowledge scores, respectively. This could be explained by a general and/or common higher knowledge and more positive experiences and perceptions of health-related issues and chronic illnesses. Also, participants who had a family member or a friend with dementia/memory problems were found unfavourable of life-prolonging interventions. It is possible that personal experience with the burdensome complications of serious illness may lead individuals to oppose life-sustaining treatment in a similar situation.49 Future investigations would benefit from further understanding the interplay between different religiosity aspects, health status and experiences, and awareness and attitudes towards ACP.
This study has several limitations such as the small convenience sample and potential recruitment of participants who may have a higher socioeconomic status and have access to a large private academic medical centre in the capital which limits the generalisability of our findings. Multimorbidity was not incorporated into the study, which may also be an important determinant in ACP and its perceived relevance to individuals. The instrument used to assess the awareness and attitude towards ACP had not yet been validated in the Lebanese context and may have failed to accurately measure several constructs such as healthcare autonomy since the perception of patient autonomy and decision making may differ among cultures.
Conclusion
Our findings revealed a large deficit in awareness about ACP among Lebanese middle-aged to older-aged adults in primary care. Yet, the majority of participants seemed to favour healthcare autonomy and documentation of ACP preferences along with having negative attitudes towards life-prolonging treatments. Therefore, there’s a need for improved awareness and applicability of ACP through establishing medical guidelines and effective public awareness campaigns while considering gender and religiosity factors and personal experiences with illness.
Data availability statement
Data are available on reasonable request. The data include deidentified participant data that is available upon request from the corresponding author Dr. Martine Elbejjani (ORCID: 0000-0002-5035-0370).
Ethics statements
Patient consent for publication
Ethics approval
The study protocol was approved by the American University of Beirut Institutional Review Board (SBS-2017-0598).
References
Supplementary materials
Supplementary Data
This web only file has been produced by the BMJ Publishing Group from an electronic file supplied by the author(s) and has not been edited for content.
Footnotes
Twitter @martinebejjani
Contributors This study was designed, directed and coordinated by GA and ME (study guarantor). KW, MT and LF contributed to data collection. ME and REH were responsible for conducting data analysis. SJ, MT, GA, ME, and LF drafted the manuscript. GA, SJ, KW, REH, TK, MT, LF and AZAH contributed to the interpretation of the data, revising the manuscript critically for important intellectual content and to shaping the research and final manuscript, and approved the final manuscript.
Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.
Competing interests None declared.
Provenance and peer review Not commissioned; externally peer reviewed.
Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.