Introduction
Many patients dying with advanced serious illnesses receive end-of-life care inconsistent with their goals and preferences (Covinsky et al. Reference Covinsky, Fuller and Yaffe2000; Dy Reference Dy2016; Khandelwal et al. Reference Khandelwal, Curtis and Freedman2017). Although most wish to die at home and be free of any suffering (Heyland et al. Reference Heyland, Heyland and Dodek2017; Lee et al. Reference Lee, Lee and Lee2020; Malhotra et al. Reference Malhotra, Farooqui and Kanesvaran2015, Reference Malhotra, Xiang and Ozdemir2017; Mandel et al. Reference Mandel, Bernacki and Block2017; Tang Reference Tang2003), many are unable to do so (Mandel et al. Reference Mandel, Bernacki and Block2017; O’Brien and Jack Reference O’Brien and Jack2010). Advance care planning (ACP) is an intervention that aims to facilitate end-of-life care consistent with an individual’s preferences (Brinkman-Stoppelenburg et al. Reference Brinkman-Stoppelenburg, Rietjens and Van der Heide2014). It is defined as a process of “enabling individuals to define goals and preferences for future medical treatment and care, to discuss these goals and preferences with family and health-care professionals (HCPs), and to record and review these preferences if appropriate” (Rietjens et al. Reference Rietjens, Sudore and Connolly2017).
Despite the promise, several trials have shown that ACP programs may not facilitate end-of-life care consistent with patients’ preferences (Bernacki et al. Reference Bernacki, Paladino and Neville2019; Johnson et al. Reference Johnson, Butow and Bell2018; Kirchhoff et al. Reference Kirchhoff, Hammes and Kehl2012; Malhotra et al. Reference Malhotra, Sim and Jaufeerally2020; Schubart et al. Reference Schubart, Levi and Bain2019; Tang et al. Reference Tang, Chen and Wen2019). As a result, some have now questioned the purpose of ACP (Morrison et al. Reference Morrison, Meier and Arnold2021; Sean Morrison, Reference Sean Morrison2020). Although the idea of ACP seems straightforward in theory, its implementation is complex (Flo et al. Reference Flo, Husebo and Bruusgaard2016; Vanderhaeghen et al. Reference Vanderhaeghen, Van Beek and De Pril2019). Past literature has explored the barriers patients, caregivers, physicians, and HCPs face, which prevent ACP conversations. However, most of these studies were conducted in the context of specific disease groups, HCP groups, or health-care settings, thus limiting their generalizability to the entire health-care system (Ali et al. Reference Ali, Anthony and Lim2021; Beck et al. Reference Beck, McIlfatrick and Hasson2017b; Blackwood et al. Reference Blackwood, Walker and Mythen2019; Cheung et al. Reference Cheung, Au and Ip2020; Fanta and Tyler Reference Fanta and Tyler2017; Fulmer et al. Reference Fulmer, Escobedo and Berman2018; Howard et al. Reference Howard, Bernard and Klein2018; Martina et al. Reference Martina, Lin and Kristanti2021; Reich et al. Reference Reich, Perez and Gazarian2022; Shepherd et al. Reference Shepherd, Waller and Sanson-Fisher2018; Vanderhaeghen et al. Reference Vanderhaeghen, Van Beek and De Pril2019; Yee et al. Reference Yee, Seow and Tan2011). Less is known about the complexity of implementing a nationwide ACP program in multiple settings within the health-care system. Further, Singapore’s national ACP program is one of the oldest in Asia (Cheng et al. Reference Cheng, Lin and Chan2020), and its experience may benefit other countries in implementing their own ACP programs.
Singapore’s national ACP program, “Living Matters,” is modeled after the Respecting Choice Program (Gunderson Health System n.d.; Malhotra and Ramakrishnan Reference Malhotra and Ramakrishnan2022). It was first launched in 2011 and implemented in the inpatient settings across public hospitals in Singapore. Subsequently, its second phase, launched in 2017, expanded the program to outpatient settings in public hospitals, public primary care clinics, and nursing homes. To better understand the complexities and barriers of effective ACP program implementation by a diverse group of HCPs in Singapore, we carried out a survey of HCPs formally trained in facilitating ACP conversations. Anecdotally, many HCPs, even after training, do not facilitate ACP conversations with patients for unknown reasons. Therefore, our first aim was to assess barriers that HCPs face in facilitating ACP conversations with patients suffering from advanced serious illnesses and in providing end-of-life care consistent with patients’ documented preferences. Based on previous literature (Ali et al. Reference Ali, Anthony and Lim2021; Cheung et al. Reference Cheung, Au and Ip2020; Martina et al. Reference Martina, Lin and Kristanti2021), we hypothesized that patient- and caregiver-related factors would be perceived to be more important barriers to ACP conversations than HCP factors. Our second aim was to identify which occupational subgroups within HCPs were less likely to have ACP conversations with patients. Based on prior literature (Dixon and Knapp Reference Dixon and Knapp2018), we hypothesized that physicians would be less likely to have ACP conversations with their patients compared to other HCPs.
Methods
Study setting and participants
We conducted a cross-sectional web-based survey with HCPs in Singapore. The survey was open for 4 weeks (14 June and 12 July 2021) to the participants. During this time, an email reminder was sent to the participants at least once per week to complete the survey. The survey was the second phase of a sequential mixed-methods study. Phase 1 of the study consisted of focus group discussions with HCPs across Singapore.
All Singapore-based HCPs who had received a formal 1-day ACP facilitation training were eligible to participate, regardless of health-care practice setting. All HCPs were employed in one of the public institutions in Singapore at the time of the survey. HCPs that had not completed the standardized training in ACP facilitation were excluded from the study. Email addresses of eligible HCPs were obtained through a database of professionals trained in facilitating ACP. HCPs provided online consent and responded to the web survey. No identifying information was recorded.
The study was approved by the institutional ethics review board at the National University of Singapore.
Questionnaire development
The survey questionnaire was developed based on a review of literature and preliminary results from 22 focus group discussions conducted with 107 HCPs in 25 organizations (Malhotra and Ramakrishnan Reference Malhotra and Ramakrishnan2022). Following that, the content validity of the questionnaire was assessed by study team members and policy experts overseeing the implementation of ACP program in Singapore. Its face validity was then assessed during pretesting with 6 respondents. Survey questionnaire was revised based on feedback from experts and pretesting results. As the intent of the survey questionnaire was not to combine individual items to form a scale or a score, we did not assess the questionnaire’s construct validity and internal consistency reliability.
The questionnaire elicited information on HCP demographics including their age, gender, professional characteristics including clinical role, number of years in current role, years since training in ACP facilitation, number of ACP conversations facilitated in the last 1 year, and frequency of seeing patients at their end of life and whether they had completed their own ACP.
HCPs were then presented with 2 vignettes describing hypothetical patient scenarios. The first vignette was administered to all HCPs trained in facilitating ACP discussions. It described a hypothetical elderly patient with an advanced serious illness, with an uncertain prognosis, and who had never had an ACP conversation. HCPs were asked to reflect on their last 1 year and answer how likely they were to have an ACP discussion with such a patient. Response options ranged from 1 to 3 (1, not likely; 2, somewhat likely; and 3, very likely) (Supplementary Figure S1). Following this vignette, HCPs were asked to rate the importance of 19 barriers to facilitating and documenting ACP conversations for such a patient. HCPs rated each barrier on a 5-point Likert scale (almost always, to a considerable degree, occasionally, seldom, and never) and ranked their 3 topmost barriers.
The second vignette was administered only to physicians trained in facilitating ACP conversations. It described the same hypothetical patient now hospitalized with an acute respiratory distress and unable to express his/her wishes. Patient had an ACP documented, indicating a preference for comfort care and no cardiopulmonary resuscitation. Without aggressive treatments, the patient was unlikely to survive. Physicians were asked to reflect on their last 1 year and answer how likely they would be to follow or execute hypothetical patient’s preferences as recorded in his/her ACP document (Supplementary Figure S2). Following this vignette, physicians were asked to rate the importance of 8 barriers for providing care consistent with preferences recorded in the ACP document. Physicians rated each barrier on a 5-point Likert scale (almost always, to a considerable degree, occasionally, seldom, and never) and ranked their 3 topmost barriers.
Statistical analysis
We described HCPs’ demographic and clinical characteristics, and the average number of ACP conversations facilitated by them.
We then categorized HCPs’ perceived barriers as HCP-related, patient-related, and caregiver-related. We reverse-coded each barrier and calculated an average score (mean [SD]) for each (range: 1–5), with a higher score indicating greater importance for that barrier. For barriers related to facilitating ACP conversations and documenting them, we stratified scores by clinical role (physician versus others) and assessed statistically significant differences between the 2 groups using the Mann–Whitney test. We also stratified HCPs’ top-ranked barriers by their clinical role (physician versus others) and assessed statistically significant differences between the 2 groups using Chi-square test. Lastly, we reported HCPs’ (physicians’) top-ranked barriers related to respecting patients’ preferences as recorded in their ACP document.
Using a logistic regression model, we assessed which subgroup of HCPs were more likely to facilitate an ACP conversation in the last 1 year. Main independent variable was HCPs’ clinical role (physician versus others). We controlled the model for other HCP characteristics – whether they had completed their own ACP (yes versus no) and frequency of seeing patients at their end of life (daily, at least once a week, at least once a month, rarely, or never). Using separate logistic regression models, we also assessed the association between each perceived barrier to ACP facilitation (independent variable) and whether or not the HCP had facilitated an ACP conversation in the last 1 year (outcome variable).
All analyses were performed using Stata version 16.1.
Results
The survey was emailed to 2,628 HCPs, 1,675 responded, and 963 (36.6%) had complete responses. Of these, 911 HCPs who had received training in facilitating ACP conversations constituted the analytic sample (Supplementary Figure S3).
Table 1 shows the sample characteristics. Average age (mean [SD]) of the HCPs was 41 (10.2) years, and over three-quarter of the HCPs were females (77%). Nearly one-fifth of the HCPs were physicians (21%) and 42% were nurses. Forty-three percent of the HCPs were practicing at a hospital. Majority (81%) had not completed ACP for themselves. Notably, despite being trained in ACP facilitation, 43% had not facilitated any ACP conversation during the last 1 year. Among these respondents, 15% were physicians and 85% were non-physician HCPs (p-value <0.01) (Supplementary Table S1).
Table 1. Sample characteristics, n = 911
a Included allied health professionals, volunteers, care coordinators, general ACP facilitators, physical therapists, social work counselors, community social workers, and administrative professionals.
b Included not-for-profit health organizations, social service agencies, and national and specialist medical centers.
In response to the first vignette, only half of the HCPs (50.3%) reported that they were “very likely” to facilitate an ACP conversation with the hypothetical elderly patient and to document the conversation (Table 2).
Table 2. Responses to hypothetical vignettes
Contrary to our hypothesis, HCP factors were perceived as the most important barriers to conducting and documenting ACP (Figure 1). Specifically, HCPs perceived conducting and documenting ACP as being time-consuming and reported lack of protected time for conducting ACP conversations. Physicians were more likely than other HCPs to report conducting and documenting ACP as time-consuming, absence of protected time to conduct ACP, and lack of recognition for their ACP work as barriers to having ACP conversations. HCPs being fearful of upsetting the patient/family, their lack of confidence in conducting ACP conversations, lack of knowledge about disease, lack of job clarity in terms of ACP, and not perceiving ACP were to be rated as least important barriers to conducting ACP; these barriers were rated as being more important by non-physicians compared to physicians. We did not find any difference between physicians and other HCPs in terms of patient- and caregiver-related factors, except that physicians were less likely than other HCPs to report that family felt patient would be unable to understand ACP.
Among patient- and caregiver-related factors, patient’s refusal to do ACP and family’s difficulty in accepting patient’s poor prognosis were listed as top-ranked barriers, respectively (Figure 2).
Fig. 1. Mean score for each barrier to conducting and documenting ACP conversations, n = 911.
Fig. 2. Ranking of barriers to conducting and documenting ACP conversations, n = 911.
In response to the second vignette administered only to physicians, more than three-quarter reported they were “very likely” to follow hypothetical patient’s preferences as recorded in their ACP document (Table 2). About 70% of the physicians perceived caregiver factors (surrogate wanting a different course of treatment compared to what was documented in the ACP document and family caregivers being conflicted about patients’ care) as barriers for providing end-of-life care consistent with documented preferences (Figure 3).
Fig. 3. Ranking of barriers to providing end-of-life care consistent with patient’s documented preferences, n = 189.
Contrary to the hypothesis, physicians were more likely (OR: 1.75; 95% CI: 1.20–2.56) to have ACP conversations with their patients compared to other HCPs. Furthermore, HCPs who had completed ACP for themselves (versus not completed) (2.29 [1.57, 3.35]) and those who frequently saw patients who were at their end of life (versus rarely/never saw) (everyday: 4.50 [2.88, 7.01]; at least once a week: 2.26 [1.41, 3.62]; at least once a month: 3.75 [2.47, 5.68]) were more likely to facilitate an ACP conversation in the past 1 year (Table 3).
Table 3. Association between actual number of ACP conversations in the past 1 year and characteristics of health-care professionals (n = 909)
*** p-value <0.01.
HCPs who considered HCP and caregiver factors as perceived barriers to ACP facilitation were less likely to facilitate any ACP conversations during the last 1 year in their actual practice. Among patient-related factors, HCPs who perceived patients’ life could be extended’ were less likely to facilitate ACP discussions in their actual practice during the last 1 year (Supplementary Table S2).
Discussion
In this national survey of HCPs trained to facilitate ACP conversations, we found that more than half had not facilitated any ACP conversations in the last year. We also found that HCP factors were the topmost barrier for them to facilitate ACP conversations with patients with advanced serious illnesses. These included lack of protected time to have ACP conversations and ACP documentation being a time-consuming process. These factors posed a greater barrier for physicians compared to other HCPs.
The results are in contrast with a previous study that highlighted patient and caregiver factors to be the most important barriers to ACP conversations than HCP factors (You et al. Reference You, Downar and Fowler2015). Several other studies have, however, highlighted HCPs’ lack of time as a key barrier for ACP conversations (Beck et al. Reference Beck, McIlfatrick and Hasson2017a; Howard et al. Reference Howard, Bernard and Klein2018; Jezewski and Feng Reference Jezewski and Feng2007; Sellars et al. Reference Sellars, Detering and Silvester2015; Zhou et al. Reference Zhou, Stoltzfus and Houldin2010). In Singapore, currently ACP conversations require one or more sessions, with each session lasting for at least an hour (Malhotra and Ramakrishnan Reference Malhotra and Ramakrishnan2022). Subsequently, ACP facilitators spend considerable time documenting the conversation, procuring signatures from patients, surrogates, and physicians, and uploading the documentation on an electronic platform (Malhotra and Ramakrishnan Reference Malhotra and Ramakrishnan2022). As a result, ACP conversations rarely take place during routine outpatient consultations. To address these barriers, simplification of ACP conversations and documentation process and allocating dedicated time within HCP’s busy schedule would be required to make these conversations less time-consuming and efficient.
Results from our study also suggest that despite receiving the standardized training, many non-physician HCPs were fearful of upsetting the patient/family indicating their worry about lack of patients’ readiness in having ACP conversations and of taking away patients’ hope. Similar findings have previously been shown in Asian countries (Martina et al. Reference Martina, Lin and Kristanti2021). Studies have also highlighted that Asian patients lack readiness in engaging with ACP conversations (Jia et al. Reference Jia, Yeh and Lee2022). Additionally, non-physician HCPs reported lack of confidence and knowledge to facilitate ACP conversations. Others have also highlighted these barriers (Howard et al. Reference Howard, Bernard and Klein2018; Jezewski and Feng Reference Jezewski and Feng2007). This could be due to their limited experience in communicating with patients and their families compared to physicians and their lack of disease-specific knowledge (Fulmer et al. Reference Fulmer, Escobedo and Berman2018; Owen et al. Reference Owen, Steel and Goffe2022). Our findings suggest that to allow HCPs to gain more disease-specific knowledge, gain greater confidence in facilitating ACP conversations, and be less fearful of upsetting patients/families, the current 1-day ACP training framework needs to be reviewed and strengthened (Malhotra and Ramakrishnan Reference Malhotra and Ramakrishnan2022).
We found that patient’s refusal to do ACP was the top-rated patient-related barrier to having ACP conversations. It is thus important to raise awareness regarding ACP and its potential benefits. Future research can also seek to understand what motivates and enables patients to have ACP conversations. Increasing access to ACP and simplifying ACP conversations can also make them less fearful for patients.
It was encouraging that about 80% of the physicians surveyed were “very likely” to follow/execute the hypothetical patient’s documented preferences. However, 70% perceived caregiver-related factors (surrogate wanting a different course of treatment compared to what was documented in the ACP document and family caregivers being conflicted about patients’ care) as barriers to providing care consistent with documented preferences. As patients’ medical condition changes, involving caregivers in regular and ongoing ACP conversations can help resolve conflicts in values and treatment preferences between patients and caregivers, while allowing caregivers to have a better understanding and preparedness of patients’ prognosis. This might increase the likelihood of caregivers making end-of-life decisions consistent with patients’ documented preferences.
Previous studies support the use of an integrative approach, targeting the interests of all stakeholders including patients, caregivers, HCPs, and general public, to optimize ACP delivery by addressing the barriers to ACP conversations for all stakeholders (Fothergill et al. Reference Fothergill, Al-Oraibi and Houdmont2022; Park et al. Reference Park, Kim and Sim2019). Our findings further suggest that ACP conversation and documentation process be simplified and ACP be made more available and accessible to patients through multiple channels, for example, tele-ACP and web-ACP. Further, these conversations need to be repeated over a period of time. HCPs, especially physicians, may require dedicated time within their schedules to have ACP conversations. The existing training framework needs to be strengthened to instill greater confidence and disease-specific knowledge among HCPs, especially non-physician HCPs. Lastly, awareness about ACP needs to be improved within general public, patients, and their caregivers.
Our study has several strengths. It is a large national survey involving a diverse group of HCPs from multiple settings across the health-care system including hospitals, primary care clinics, nursing home, hospice, and home care settings. The survey questionnaire was designed based on responses from focus group discussions conducted by our team. The study also has limitations. First, there is a potential for response bias, with those responding to this survey having different perspectives than those who did not respond to this survey. Second, our sample comprised a high proportion of females and nurses and a lower proportion of providers from primary care settings, thus, limiting the representativeness of the sample responses to the wider population of HCPs trained in ACP facilitation. Third, because the survey was anonymized, the potential for respondents to complete the survey more than once cannot be completely ruled out. However, we estimate the potential for this to be low given the length of the survey and the lack of any financial incentive to complete the survey. Further, we monitored the response rate by each organization to assess any unusually high response rate within any organization; none was detected. Lastly, the findings of our study are limited to study-specific geographical setting.
Conclusion
This national survey of HCPs trained in facilitating ACP conversations highlighted that about half of them had never facilitated an ACP conversation/documentation in the last year. HCP factors, namely lack of time for conducting ACP and ACP being a time-consuming process, were the most important barriers to facilitating ACP conversations. We suggest potential strategies to increase HCPs’ engagement in ACP, which include simplifying the ACP conversation and documentation process, setting aside time in HCPs’ schedules to have ACP conversations, and improving the ACP training framework. Future interventions should also address patient- and caregiver-related barriers to ACP conversations by increasing their awareness and readiness in having ACP conversations and making ACP widely and easily accessible to all.
Supplementary material
The supplementary material for this article can be found at https://doi.org/10.1017/S1478951523000214
Author contributions
C.M. conceived and designed the study and contributed in data acquisition. I.C. analyzed the data and summarized the findings. C.M. and I.C. helped draft and finalize the manuscript.
Conflicts of interest
The authors declare that there is no conflict of interest.
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