Do non-terminally ill adults want to discuss the end of life with their family physician? An explorative mixed-method study on patients’ preferences and family physicians’ views in Belgium

Do non-terminally ill adults want to discuss the end of life with their family physician? An... Abstract Background Research about advance care planning (ACP) has often targeted those with serious illness and limited prognosis, thereby not addressing the preferences of healthy adults or adults with a stable condition. Aims (i) To describe to what extent patients aged 50 and older who are relatively stable or in good health are thinking about the end of life (EOL) and willing to discuss this with their family physician (FP) and (ii) to explore whether patients and FPs indicate the same topics as triggers for ACP discussions in family practice. Methods A cross-sectional study was conducted in a diverse sample of 289 patients aged ≥50 years in family practice in Flanders, Belgium. Subsequently, semi-structured interviews were conducted with patients (n = 5) and FPs (n = 5) to explore their preferences and views on ACP in family practice. Results The majority (69.8%) of patients had thought about the EOL and would appreciate it if their FP would initiate a conversation about this (75.9%). The qualitative interviews revealed that when thinking about the EOL, a number of themes captured the thoughts of people according to both patients and FPs: (i) becoming care dependent, (ii) physical and mental deterioration, (iii) dying alone and (iv) having paperwork in order. However, on the basis of patients’ ideas and FPs’ experiences in practice, a difference was noticed between them when it comes to identifying the themes as triggers for initiating ACP discussions. Conclusion Although patients are willing to discuss the EOL with their FPs, patients and FPs identified different themes as triggers to initiate discussions about the EOL. The variation in triggers could lead to missed opportunities to engage in ACP in a timely manner. Advance care planning, end-of-life care, family physicians, family practice, non-terminally ill patients, palliative care Introduction Advance care planning (ACP) is a communication process between individuals, their relatives and healthcare providers that allows competent patients to plan for future health care and end-of-life (EOL) care (1). ACP involves reflection and discussion about patients’ values, wishes and preferences regarding the care that will be considered appropriate for a time when patients can no longer make decisions for themselves. Studies have shown that ACP stimulates EOL conversations, reduces stress among surrogate decision makers, reduces life-sustaining therapies that are discordant with patient preferences and improves the quality of EOL care (2). Ideally, ACP is carried out as an ongoing process, and not a one-time decision, to better prepare patients and their relatives to make ‘in the moment’ medical decisions (3). Therefore, it is suggested that ACP is initiated in the primary care setting where patients are relatively healthy or when their condition is stable in anticipation of future ill-health (4). In many countries like Belgium, the Netherlands, the UK, Canada and the USA, primary care physicians and more specifically family physicians (FPs) are considered to be ideally suited to engage these patients in the process of ACP (5–8). The longitudinal relationship that FPs have with their patients, as well as a number of features inherent to most patient–FP relationships—trust, continuity of care and the ability to coordinate care across different setting—places them in a unique position to engage in conversations about future care. In Belgium, family practice is highly accessible and more than 95% of people have a fixed FP whom they visit regularly (with 78% seeing their FP at least once a year) (9). As in many countries, the FP is also one of the most important professional caregivers during the last years of life and, therefore, a well-placed person to take into account a person’s wishes and preferences regarding care (10). The importance of early conversations in primary care is also highlighted by evidence-based guidelines on ACP (11) and programmes such as the Respecting Choices Program (12) which recommend healthcare professionals to initiate ACP with people from the age of 50 at any stage of health. Adults from the age of 50 are a unique age group as they are often for the first time confronted with a serious or chronic illness, or with the ageing and dying of a close relative such as their parents, which are important triggers to start thinking about future health and EOL care (13,14). Studies show that people feel comfortable talking with their FP about medical treatment options concerning the EOL, and also that most people feel that their physician should start the conversation (15). However, the first discussions on ACP are rarely carried out in primary care and often occur during an acute hospitalization or nursing home admission (16). The barriers and facilitators to ACP for both patients and FPs are well documented (15), however, research has often targeted those with a limited life prognosis (17,18), thereby not addressing the preferences of healthy adults or adults with a stable condition aged 50 and older. It is unclear to what extent it is feasible to facilitate ACP in family practice in a group of older adults with diverse ages. Therefore, the aim of this study is to (i) describe to what extent patients aged 50 and older who are relatively stable or in good health are actually thinking about the EOL and willing to discuss this with their FP and determine the factors associated with these outcomes and (2) explore whether patients and FPs indicate the same topics as triggers for ACP discussions in family practice. Identifying the topics that are prioritized in a diverse group of older adults when thinking about the EOL might guide FPs in their efforts to engage a broader range of patients in ACP. Methods Study design and setting A mixed-method design was used. First, a cross-sectional study was conducted in a sample of 286 patients aged ≥50 years in family practice. Subsequently, semi-structured interviews were conducted with patients (n = 5) and FPs (n = 5) to explore the results of the cross-sectional study and to further explore patients’ thoughts on and FPs’ experiences with and views on communication about the EOL. This study took place in Flanders, Belgium, between April and August 2014. Recruitment of participants For the cross-sectional study, we recruited a convenience sample of patients attending two family group practices. The first family group practice consisted of four FPs, one FP-in-training, one dietician, a home care nurse and a secretary, serving a total of 3800 patients. The second family group practice consisted of three FPs, one FP-in-training and a secretary, serving a total of 5200 patients. Both family practices were located in rural areas. In Belgium, around 25% of full-time working FPs are working in group practices and the average number of patients per FP was estimated at 1003 in 2009 (19). Between 26 May and 12 September 2014 (study period), all the FPs from the two group practices were asked to approach the first 10 consecutive eligible patients at the end of each consultation on a daily basis, which resulted in a total of 308 completed questionnaires. Patients who were willing to participate had the option to either fill in the questionnaire immediately after their consultation with the FP in the waiting room or to fill in the questionnaire later at home and then return it to the family practice in person or by mail, where all questionnaires were collected by the researchers at the end of the study period. Eligible patients were 50 years and older, could read and speak Flemish and did not have a terminal illness or cognitive impairment. At the end of the questionnaire, all patients were asked whether they wanted to participate in a semi-structured interview. To obtain a broader and more comprehensive view about FPs’ experiences with ACP, we purposefully recruited participants from other family practices to obtain a sample of both female and male FPs, working in both solo and group practices and from practices located in an urban and rural area. The FPs were recruited by contacting them via the telephone. Owing to the limited time for this study, only five patients and five FPs could be interviewed. The interviews were arranged at a convenient time and place for the patients and FPs. Data collection For the cross-sectional study, we adapted a questionnaire previously developed and validated for use in patients aged ≥18 years in family practice to audit the attitudes of non-terminal patients regarding the EOL and how FPs could address these (20). The questionnaire was adapted with input from experts in healthcare communication and family practice. Besides socio-demographic and health-related characteristics, an overview of the self-administered questionnaire is outlined in Box 1. Possible responses were ‘Yes’ or ‘No’ for each question. Box 1: Patient questionnaire 1 a) Have you ever thought about the end-of-life or dying? b) Does thinking about the end-of-life makes you anxious? 2. a) Would you like to discuss the end-of-life or dying with your FP? b) Do you experience barriers when trying to discuss the end-of-life with your FP? c) Would you appreciate it if your FP brought up the topic of end-of-life? 3. a) Have you already made specific decisions regarding your own end-of-life or death? b) Would you consider it of added value if your decisions regarding the end-of-life would be documented on paper or if your FP would be aware of these decisions (and documents them in your medical file)? For the semi-structured interviews with patients and FPs, two separate interview guides were developed. Both covered four general themes (Box 2). At the beginning of the interviews, participants were informed about the study goals. The interviews lasted on average between 30 min and 1 h and were audiotaped, for which all participants gave their informed consent. Box 2: Qualitative interview guides Interview guide patients: 1. Reasons to think or not think about the end-of-life and death, 2. What topics patients would like to discuss with their FP regarding the end-of-life, 3. When patients would like to talk about these issues, 4. With whom these issues ideally should be discussed. Interview guide family physicians: 1. Experiences with discussing the end-of-life in family practice, 2. Feasibility of discussing the end-of-life with non-terminal patients ≥50 years, 3. Barriers and facilitators to engage in these discussions, 4. Perceptions about the results of the cross-sectional study. Analysis Characteristics of the patients were described as counts and percentages for categorical variables. Answers to the questionnaire were reported as percentage of patients. To explore the associations between socio-demographic and health-related characteristics and preferences on EOL communication, we conducted Pearson chi-square tests. Independent variables were sex, age, educational level, marital status, suffering from a chronic illness and the experience of a recent death of someone close to them. Dependent variables were as follows: ‘Ever thought about the EOL or dying’ (yes versus no) and ‘Wanting to discuss the EOL with their FP’ (yes versus no). When found significant (P < 0.05), the independent variables were entered in multivariable logistic regression models to control for confounding effects and investigate their association with the dependent variables. Confidence intervals were calculated at the 95% level. All analyses were performed using the SPSS 23.0 software. The interviews were transcribed verbatim and analysed using constant comparative analysis (21). Two researchers (DB and TD) familiarized themselves with the data by repeated reading of the transcripts and independently developing an open coding framework. Secondly, the open codes were clustered into broader categories. The views from two perspectives, i.e. patients and FPs, were compared to determine areas of agreement and divergence. Ongoing analysis led to the generation and refining of themes. Themes that were either mentioned by all or most participants were considered as more important and given more weight (Fig. 1), as well as themes that were explicitly identified as important by the respondents during the interviews. Finally, quotes were selected and approved by the research team to illustrate the results. Figure 1. View largeDownload slide Prioritization of themes as triggers to initiate advance care planning discussions, with the more important themes carrying more weight Figure 1. View largeDownload slide Prioritization of themes as triggers to initiate advance care planning discussions, with the more important themes carrying more weight Results Sample characteristics A total of 308 questionnaires were completed between May and September 2014, but only 286 were included for analysis. Twenty-two questionnaires were considered as ineligible because the respondents were younger than 50 years. See Table 1 for sample characteristics. Table 1. Sample characteristics of patients aged 50 years and older in family practice, 2014 (N = 286) Participant characteristics N (%) Gender  Man 139 (48.6)  Woman 144 (50.3) Age (years)  50–59 122 (43.0)  60–69 78 (27.5)  70–79 53 (18.7)  80+ 31 (10.9) Educational level  Primary education 7 (3.6)  Lower secondary 39 (20.2)  Higher secondary 104 (53.9)  Higher education 43 (22.3) Civil status  Single 80 (28.8)  Married or cohabiting 197 (71.1) Having children  Yes 239 (86.3)  No 38 (13.6) Having a chronic illness  Yes 153 (53.8)  No 127 (45.2) Experience of a recent death of someone close  Yes 104 (37.8)  No 171 (62.2) Participant characteristics N (%) Gender  Man 139 (48.6)  Woman 144 (50.3) Age (years)  50–59 122 (43.0)  60–69 78 (27.5)  70–79 53 (18.7)  80+ 31 (10.9) Educational level  Primary education 7 (3.6)  Lower secondary 39 (20.2)  Higher secondary 104 (53.9)  Higher education 43 (22.3) Civil status  Single 80 (28.8)  Married or cohabiting 197 (71.1) Having children  Yes 239 (86.3)  No 38 (13.6) Having a chronic illness  Yes 153 (53.8)  No 127 (45.2) Experience of a recent death of someone close  Yes 104 (37.8)  No 171 (62.2) Sums may not always amount to the total sample number because of missing values on variables. Percentages may not always add up to 100 because of rounding. Missing values: for gender, n = 3; for age, n = 2; for education, n = 93; for civil status, n = 9; for having children, n = 6; for having a chronic illness, n = 5; and for experience of a recent death, n = 11. View Large Table 1. Sample characteristics of patients aged 50 years and older in family practice, 2014 (N = 286) Participant characteristics N (%) Gender  Man 139 (48.6)  Woman 144 (50.3) Age (years)  50–59 122 (43.0)  60–69 78 (27.5)  70–79 53 (18.7)  80+ 31 (10.9) Educational level  Primary education 7 (3.6)  Lower secondary 39 (20.2)  Higher secondary 104 (53.9)  Higher education 43 (22.3) Civil status  Single 80 (28.8)  Married or cohabiting 197 (71.1) Having children  Yes 239 (86.3)  No 38 (13.6) Having a chronic illness  Yes 153 (53.8)  No 127 (45.2) Experience of a recent death of someone close  Yes 104 (37.8)  No 171 (62.2) Participant characteristics N (%) Gender  Man 139 (48.6)  Woman 144 (50.3) Age (years)  50–59 122 (43.0)  60–69 78 (27.5)  70–79 53 (18.7)  80+ 31 (10.9) Educational level  Primary education 7 (3.6)  Lower secondary 39 (20.2)  Higher secondary 104 (53.9)  Higher education 43 (22.3) Civil status  Single 80 (28.8)  Married or cohabiting 197 (71.1) Having children  Yes 239 (86.3)  No 38 (13.6) Having a chronic illness  Yes 153 (53.8)  No 127 (45.2) Experience of a recent death of someone close  Yes 104 (37.8)  No 171 (62.2) Sums may not always amount to the total sample number because of missing values on variables. Percentages may not always add up to 100 because of rounding. Missing values: for gender, n = 3; for age, n = 2; for education, n = 93; for civil status, n = 9; for having children, n = 6; for having a chronic illness, n = 5; and for experience of a recent death, n = 11. View Large Patients’ preferences for communication about the end of life The majority of patients (69.8%) indicated to already have thought about their EOL or dying and are willing to discuss this with their FP (62.3%) (see Table 2). 75.9% of patients also indicated that they would appreciate it if their FP would initiate the conversation and 17.3% of patients experience barriers to discuss the EOL with their FP. Although 65.1% of patients would consider it of added value that their end-of-life decisions (ELDs) are documented on paper or known by their FP, only 19.6% had already made specific ELDs for themselves. Table 2. Proportion of patients’ preferences for communication about the end of life Preferences for communication about the end of life Yes, N (%) Ever thought about their end of life or death 199 (69.8) Thinking about the end of life makes them anxious 81 (28.9) Wanting to discuss their thoughts on the end of life with their family physician 177 (62.3) Experiencing barriers to discuss the end of life with their family physician 48 (17.3) Would appreciate it if their family physician brought up the topic of end of life 214 (75.9) Already made specific decisions regarding their own end of life or death 56 (19.6) To consider it of added value if their end-of-life decisions would be documented on paper or known by their family physician 177 (65.1) Preferences for communication about the end of life Yes, N (%) Ever thought about their end of life or death 199 (69.8) Thinking about the end of life makes them anxious 81 (28.9) Wanting to discuss their thoughts on the end of life with their family physician 177 (62.3) Experiencing barriers to discuss the end of life with their family physician 48 (17.3) Would appreciate it if their family physician brought up the topic of end of life 214 (75.9) Already made specific decisions regarding their own end of life or death 56 (19.6) To consider it of added value if their end-of-life decisions would be documented on paper or known by their family physician 177 (65.1) Sums may not always amount to the total sample number because of missing values on variables. Percentages may not always add up to 100 because of rounding. Missing values: Ever thought about their end of life or death, n = 1; wanting to discuss their thoughts on the end of life with their FP, n = 2; would appreciate it if their FP brought up the topic of end of life, n = 4; experiencing barriers to discuss the end of life with their FP, n = 8; to consider it of added value if their end-of-life decisions would be documented on paper or known by their FP, n = 14; already made specific decisions regarding their own end of life or death, n = 0; and thinking about the end of life makes them anxious, n = 6. View Large Table 2. Proportion of patients’ preferences for communication about the end of life Preferences for communication about the end of life Yes, N (%) Ever thought about their end of life or death 199 (69.8) Thinking about the end of life makes them anxious 81 (28.9) Wanting to discuss their thoughts on the end of life with their family physician 177 (62.3) Experiencing barriers to discuss the end of life with their family physician 48 (17.3) Would appreciate it if their family physician brought up the topic of end of life 214 (75.9) Already made specific decisions regarding their own end of life or death 56 (19.6) To consider it of added value if their end-of-life decisions would be documented on paper or known by their family physician 177 (65.1) Preferences for communication about the end of life Yes, N (%) Ever thought about their end of life or death 199 (69.8) Thinking about the end of life makes them anxious 81 (28.9) Wanting to discuss their thoughts on the end of life with their family physician 177 (62.3) Experiencing barriers to discuss the end of life with their family physician 48 (17.3) Would appreciate it if their family physician brought up the topic of end of life 214 (75.9) Already made specific decisions regarding their own end of life or death 56 (19.6) To consider it of added value if their end-of-life decisions would be documented on paper or known by their family physician 177 (65.1) Sums may not always amount to the total sample number because of missing values on variables. Percentages may not always add up to 100 because of rounding. Missing values: Ever thought about their end of life or death, n = 1; wanting to discuss their thoughts on the end of life with their FP, n = 2; would appreciate it if their FP brought up the topic of end of life, n = 4; experiencing barriers to discuss the end of life with their FP, n = 8; to consider it of added value if their end-of-life decisions would be documented on paper or known by their FP, n = 14; already made specific decisions regarding their own end of life or death, n = 0; and thinking about the end of life makes them anxious, n = 6. View Large Factors associated with thinking about the end of life or dying and wanting to discuss this with the family physician Having previously thought about their own EOL or death was significantly more common among women, patients with a higher educational level and patients with children (Table 3). Patients aged between 50 and 69 years and patients with a higher educational level more often want to discuss their EOL with their FP. Table 3. Proportion of ‘thinking about the end of life or dying’ and ‘wanting to discuss the end of life with the family physician’ by socio-demographic characteristics of the patients Ever thought about the EOL or dying (yes versus no)a Wanting to discuss the EOL with their FP (yes versus no)a Patient characteristics N (%) P valueb N (%) P valueb Gender  Man 88 (63.8) 0.04 82 (59.4) 0.20  Woman 108 (75) 93 (65) Age (years)  50–59 88 (72.1) 0.18 77 (63.6) 0.04  60–69 58 (75.3) 54 (70.1)  70–79 33 (62.3) 31 (58.5)  80+ 18 (58.1) 13 (41.9) Educational level  Lower education 50 (61) 0.01 42 (51.9) 0.02  Technical education 46 (68.7) 42 (62.7)  Higher education 37 (86) 33 (76.7) Civil status  Single 56 (70) 1.00 48 (60) 0.36  Married or cohabiting 137 (69.9) 123 (63.1) Having children  Yes 174 (72.2) 0.02 151 (62.9) 0.23  No 20 (52.6) 21 (55.3) Having a chronic illness  Yes 108 (70.6) 0.79 95 (62.1) 0.51  No 87 (68.5) 79 (62.7) Recent death of someone close  Yes 69 (66.3) 0.50 58 (56.3) 0.09  No 120 (70.6) 111 (65.3) Ever thought about the EOL or dying (yes versus no)a Wanting to discuss the EOL with their FP (yes versus no)a Patient characteristics N (%) P valueb N (%) P valueb Gender  Man 88 (63.8) 0.04 82 (59.4) 0.20  Woman 108 (75) 93 (65) Age (years)  50–59 88 (72.1) 0.18 77 (63.6) 0.04  60–69 58 (75.3) 54 (70.1)  70–79 33 (62.3) 31 (58.5)  80+ 18 (58.1) 13 (41.9) Educational level  Lower education 50 (61) 0.01 42 (51.9) 0.02  Technical education 46 (68.7) 42 (62.7)  Higher education 37 (86) 33 (76.7) Civil status  Single 56 (70) 1.00 48 (60) 0.36  Married or cohabiting 137 (69.9) 123 (63.1) Having children  Yes 174 (72.2) 0.02 151 (62.9) 0.23  No 20 (52.6) 21 (55.3) Having a chronic illness  Yes 108 (70.6) 0.79 95 (62.1) 0.51  No 87 (68.5) 79 (62.7) Recent death of someone close  Yes 69 (66.3) 0.50 58 (56.3) 0.09  No 120 (70.6) 111 (65.3) EOL, end of life; FP, family physician; NS, not significant. aColumn percentages. bPearson chi-square test for differences between the two groups; P < 0.05 are given in bold. View Large Table 3. Proportion of ‘thinking about the end of life or dying’ and ‘wanting to discuss the end of life with the family physician’ by socio-demographic characteristics of the patients Ever thought about the EOL or dying (yes versus no)a Wanting to discuss the EOL with their FP (yes versus no)a Patient characteristics N (%) P valueb N (%) P valueb Gender  Man 88 (63.8) 0.04 82 (59.4) 0.20  Woman 108 (75) 93 (65) Age (years)  50–59 88 (72.1) 0.18 77 (63.6) 0.04  60–69 58 (75.3) 54 (70.1)  70–79 33 (62.3) 31 (58.5)  80+ 18 (58.1) 13 (41.9) Educational level  Lower education 50 (61) 0.01 42 (51.9) 0.02  Technical education 46 (68.7) 42 (62.7)  Higher education 37 (86) 33 (76.7) Civil status  Single 56 (70) 1.00 48 (60) 0.36  Married or cohabiting 137 (69.9) 123 (63.1) Having children  Yes 174 (72.2) 0.02 151 (62.9) 0.23  No 20 (52.6) 21 (55.3) Having a chronic illness  Yes 108 (70.6) 0.79 95 (62.1) 0.51  No 87 (68.5) 79 (62.7) Recent death of someone close  Yes 69 (66.3) 0.50 58 (56.3) 0.09  No 120 (70.6) 111 (65.3) Ever thought about the EOL or dying (yes versus no)a Wanting to discuss the EOL with their FP (yes versus no)a Patient characteristics N (%) P valueb N (%) P valueb Gender  Man 88 (63.8) 0.04 82 (59.4) 0.20  Woman 108 (75) 93 (65) Age (years)  50–59 88 (72.1) 0.18 77 (63.6) 0.04  60–69 58 (75.3) 54 (70.1)  70–79 33 (62.3) 31 (58.5)  80+ 18 (58.1) 13 (41.9) Educational level  Lower education 50 (61) 0.01 42 (51.9) 0.02  Technical education 46 (68.7) 42 (62.7)  Higher education 37 (86) 33 (76.7) Civil status  Single 56 (70) 1.00 48 (60) 0.36  Married or cohabiting 137 (69.9) 123 (63.1) Having children  Yes 174 (72.2) 0.02 151 (62.9) 0.23  No 20 (52.6) 21 (55.3) Having a chronic illness  Yes 108 (70.6) 0.79 95 (62.1) 0.51  No 87 (68.5) 79 (62.7) Recent death of someone close  Yes 69 (66.3) 0.50 58 (56.3) 0.09  No 120 (70.6) 111 (65.3) EOL, end of life; FP, family physician; NS, not significant. aColumn percentages. bPearson chi-square test for differences between the two groups; P < 0.05 are given in bold. View Large Multivariate analyses showed that educational level was the only significant factor: patients with a higher educational level were more likely to have previously thought about their EOL and dying (OR = 4.16, 95% CI 1.52–11.38), and to want to discuss this with their FP (OR = 2.97, 95% CI 1.22–7.25) when compared with patients with a lower educational level (Table 4). Table 4. Factors associated with thinking about the EOL or dying and wanting to discuss the EOL with the FP Ever thought about the EOL or dying (yes versus no)a Wanting to discuss the EOL with their FP (yes versus no)a Patient characteristics OR (95% CI) OR (95% CI) Gender  Man Ref –  Woman 1.67 (0.85–3.38) – Age (years)  50–59 – Ref  60–69 – 2.06 (0.90–4.75)  70–79 – 0.73 (0.31–1.73)  80+ – 0.58 (0.20–1.70) Educational level  Lower education Ref Ref  Technical education 1.53 (0.76–3.08) 1.55 (0.75–3.19)  Higher education 4.16 (1.52–11.38)* 2.97 (1.22–7.25)* Civil status  Single – –  Married or cohabiting – – Having children  Yes 1.45 (0.60–3.50) –  No Ref – Ever thought about the EOL or dying (yes versus no)a Wanting to discuss the EOL with their FP (yes versus no)a Patient characteristics OR (95% CI) OR (95% CI) Gender  Man Ref –  Woman 1.67 (0.85–3.38) – Age (years)  50–59 – Ref  60–69 – 2.06 (0.90–4.75)  70–79 – 0.73 (0.31–1.73)  80+ – 0.58 (0.20–1.70) Educational level  Lower education Ref Ref  Technical education 1.53 (0.76–3.08) 1.55 (0.75–3.19)  Higher education 4.16 (1.52–11.38)* 2.97 (1.22–7.25)* Civil status  Single – –  Married or cohabiting – – Having children  Yes 1.45 (0.60–3.50) –  No Ref – EOL, end of life; FP, family physician; OR, odds ratio; ref, reference category. aOdds ratio with 95% confidence interval from multivariate logistic regression models. *P < 0.05 are given in bold. View Large Table 4. Factors associated with thinking about the EOL or dying and wanting to discuss the EOL with the FP Ever thought about the EOL or dying (yes versus no)a Wanting to discuss the EOL with their FP (yes versus no)a Patient characteristics OR (95% CI) OR (95% CI) Gender  Man Ref –  Woman 1.67 (0.85–3.38) – Age (years)  50–59 – Ref  60–69 – 2.06 (0.90–4.75)  70–79 – 0.73 (0.31–1.73)  80+ – 0.58 (0.20–1.70) Educational level  Lower education Ref Ref  Technical education 1.53 (0.76–3.08) 1.55 (0.75–3.19)  Higher education 4.16 (1.52–11.38)* 2.97 (1.22–7.25)* Civil status  Single – –  Married or cohabiting – – Having children  Yes 1.45 (0.60–3.50) –  No Ref – Ever thought about the EOL or dying (yes versus no)a Wanting to discuss the EOL with their FP (yes versus no)a Patient characteristics OR (95% CI) OR (95% CI) Gender  Man Ref –  Woman 1.67 (0.85–3.38) – Age (years)  50–59 – Ref  60–69 – 2.06 (0.90–4.75)  70–79 – 0.73 (0.31–1.73)  80+ – 0.58 (0.20–1.70) Educational level  Lower education Ref Ref  Technical education 1.53 (0.76–3.08) 1.55 (0.75–3.19)  Higher education 4.16 (1.52–11.38)* 2.97 (1.22–7.25)* Civil status  Single – –  Married or cohabiting – – Having children  Yes 1.45 (0.60–3.50) –  No Ref – EOL, end of life; FP, family physician; OR, odds ratio; ref, reference category. aOdds ratio with 95% confidence interval from multivariate logistic regression models. *P < 0.05 are given in bold. View Large Qualitative results A total of 10 interviews were conducted, involving 5 patients (3 women) and 5 FPs (4 men). The patients’ age ranged from 54 to 72 years. Of these patients, one woman suffered from chronic diabetes and had limited mobility, one woman was a patient with heart failure (stage 2) and one man was a recovering cancer patient, but all considered their condition as stable at that moment. The two other participants had an overall good health status. The FPs’ age ranged from 37 to 65 years. Their FP practices were located in both rural and urban regions and consisted of both solo and group practices. When thinking about the EOL, four interrelated themes captured the thoughts of people aged ≥50 years according to patients and FPs: care dependency, physical and mental deterioration at the EOL, dying alone and having the paperwork in place. In contrast to the quantitative results, no differences were noticed or mentioned according to patients’ sex or educational level. However, based on patients’ ideas and FPs’ experiences in practice, a difference was noticed between them when it comes to identifying suitable and relevant themes for initiating ACP discussions (see Fig. 1). Becoming care dependent When thinking about their own EOL, all patients—regardless of age or sex—reported to worry about becoming care dependent of others. Some patients were concerned about becoming too much of a burden on their partner or children; others mentioned having no next of kin or no eligible family members to take care of them at the EOL as the underlying reason for not wanting to become care dependent: My husband has a borderline disorder and I can already hardly burden myself on him. My only son has uncontrolled diabetes, is divorced and can barely take care of himself. I do wonder sometimes who will take care of me? (Patient 3: women, 72 years, diagnosis of heart failure.) In that case, I would have no fears about the end of life. I would know that there is always someone there for me that also would do anything for me (When asked what would be different if she wouldn’t have a quarrel with her daughter; Patient 2: woman, 60 years.) Although this topic was mentioned by all patients, only one FP in this study indicated the concern of becoming care dependent and the associated fear of being a burden as a theme that is sometimes in practice, and more specifically for older people: Some older people feel they are a burden to society or to their family and then they start to think about their end of life. Physical and mental deterioration Commonly identified by patients and FPs as an important thought, but again mostly for older adults according to the FPs, was a fear of physical and mental decline at the EOL. Specifically, the fear of getting dementia or being in pain and suffering was often mentioned as a concern for people by both groups of participants. For two patients, this thought was again motivated by the idea of not wanting to become a burden on others: I don’t want to suffer. And when the time comes, I want (the FP) to help me, so that I’m not suffering and I don’t lie there like a plant. I don’t want to fight against the pain. (Man, 56 years.) When I grow old, I want to grow old in a good way. It may be less for me physically, but deteriorating mentally and becoming demented and dependent on others, that makes me anxious. (Patient 1: woman, 57 years, diagnosis of diabetes.) Most of the interviewed patients also (vaguely) mentioned a preference for no unnecessary life-prolonging treatments in case of severe physical and/or mental decline at the EOL, which was confirmed by the FPs as common in their practice when discussing this theme: Especially the fear to be in pain and suffering. They hope to be able to die in a peaceful way and to have a little bit of control over it. They also fear of getting more treatments than necessary. They say that they don’t want to get dementia and that when they are demented they want to put an end to it. But if you explore that deeper, the question often turns out to be different. It’s then more about certain worries patients have and what the quality of life is for someone with dementia. Dying alone Two patients indicated that the thought of dying alone worried them. Patients’ recollections of a previously experienced death of someone close to them influenced how they thought about this situation. In contrast, this theme was not identified in the narratives of the FPs as something that is discussed in family practice with regard to the EOL: One of the things I worry about is that I don’t want to die alone. I know that for such things I will be alone because I am single. It could be that something happens to me and no one will find me. . . . Yes, that makes me think about the end of life sometimes. (Patient 1: woman, 57 years, diagnosis of diabetes.) My father passed away four years ago. He died on Christmas day, here at home. A nurse put him in bed, he had drunk a glass of champagne and ate some toasts on Christmas Eve. In hindsight, that was actually a beautiful death. The whole family was here. I would like that too. (Patient 2: woman, 60 years.) Having their paperwork in place According to the FPs, one of the most common initiated topics in family practice by patients aged between 50 and 70 years regarding the EOL, as opposed to older patients, is euthanasia and more specifically the advance directive on euthanasia. As one physician explained: We do get more and more questions about euthanasia from patients around the age of 50 and 60 years ‘wanting to have their paperwork in place’. Often, this is in response to the death of someone close to them in a way they would never want, or something they have seen on television or read in the paper. Although identified as an important theme according to the FPs, only one of the interviewed patients had already completed an advance directive regarding the refusal of specific treatments at the EOL as well as on euthanasia, which were both completed with his FP’s help. Some other patients already had their funeral arrangements and a financial will in place, but did not mention the advance directives on the refusal of specific treatments or euthanasia. Discussion This study showed that, in a sample of 286 patients aged 50 years and older, the majority (69.8%) had thought about the EOL and would appreciate it if their FP would initiate a conversation about this (75.9%). People with a higher educational level were more likely to have thought about the EOL and wanting to discuss this with their FP. We further explored the opportunities of discussing ACP by asking both patients and FPs what concerns people of 50 years and older with regard to the EOL. Four interrelated themes captured the thoughts of people according to patients and FPs: care dependency, physical and mental deterioration at the EOL, dying alone and having the paperwork in order. Although patients and FPs identified similar topics as triggers to discuss ACP, a difference was noticed when it came to prioritizing the themes as reasons to initiate a talk. Several studies have addressed the barriers and facilitators for initiating ACP in family practice, both from patients’ and FPs’ perspectives (10,15). However, few studies have looked at a healthy or stable patient population aged 50 and older, who are according to evidence-based guidelines an eligible group to conduct the first steps of ACP with such as raising awareness about ACP, informing them of options and exploring patients’ values (11,14). This may encourage them to manage EOL issues with their own ageing parents and relatives and start planning for their own EOL care. Other important strengths of the study include the relatively large sample size of patients in the cross-sectional study and the use of a validated questionnaire about attitudes of non-terminal patients regarding the EOL in Flanders, Belgium. The cross-sectional study showed that the majority of people have thought about the EOL and would appreciate it if their FP would initiate a conversation about this, but by using a mixed-methodology design, we were able to further explore these results in a qualitative way and identify both patients’ and FPs’ views on the topics that people are concerned with when thinking about the EOL. Although we interviewed a heterogeneous group of FPs and patients in terms of age, sex and health status, no difference could be noticed according to these socio-demographic factors. The small sample size presents a limitation to the study and the results should be interpreted as explorative. Secondly, as a result of the recruitment procedure for the interviews (i.e. patients who participated in the cross-sectional study), some participants might have had an increased interest in the topic. Hence, further qualitative research in a larger sample is recommended. We found that only 17.3% of patients in the cross-sectional study indicated experiencing barriers for discussing the EOL with their FP. However, the qualitative data revealed that although patients often think about topics such as becoming care dependent and the fear of physical and mental deterioration at the EOL, these are not often discussed in family practice. On the one hand, it might be that for particular topics patients either feel uncomfortable discussing them or expect their FP to initiate discussions about this (22,23). A recent Canadian study of current ACP practices in elderly and seriously ill, hospitalized patients showed that although more than 75% had thought about the care they would want at the EOL, more than 90% had discussed their preferences with other family members, and less than 30% had discussed this with their doctor (24). Similar results were found in a multicentre study on the engagement in ACP of patients aged 50 years and older in primary care. Of those patients who talked to someone about which medical treatments were wanted or not at the EOL, 92% had talked to family members while only 18% had talked to their family doctor (25). On the other hand, a systematic review on the barriers for FPs to initiate ACP found stronger evidence for the FP’s attitude that patients should initiate discussions (15). Remarkably, many studies show that patients believe it is the physician’s responsibility, which demonstrates a gap in expectations between patients and FPs. This study adds to these findings by showing that one of the reasons patients and FPs wait for the other to start discussing the EOL might be that patients and FPs prioritize different themes as triggers to discuss ACP. This problem can be tackled in a number of ways. First, FPs should be more aware about the topics that capture patients’ thoughts when thinking about the EOL, which can be done through educational training for FPs. Secondly, most patients indicated in our survey to appreciate it if their FP would initiate conversations about the EOL, suggesting that a more active role for FPs could enhance more patient-centred ACP, adapted to patients needs and own experiences. As the population is aging, the number of people living and dying with chronic life-limiting disease is increasing. These illness trajectories are often accompanied by complex medical (EOL) decision making, in which surrogate decision makers will play a more prominent role as the number of people living with dementia is also rising. To anticipate this, it is important that FPs actively initiate ACP with a younger or healthier population. FPs are usually cognizant of both physical and non-physical domains of a patient’s health; so, the time-consuming nature of ACP conversations can possibly be limited by initiating ACP in family practice. Gallagher (5) has outlined how FPs can actively engage in ACP by incorporating ACP appointments in the office setting and provide accurate information about ACP and pro-actively asking questions about patients’ values, beliefs and goals to initiate EOL conversations. Thirdly, public information campaigns can also play an important role in increasing ACP communication in family practice. In the present study, we observed that although most patients have thought about the EOL, they have not actively taken the step to discuss these thoughts with their FP. Fried et al. (26) have demonstrated that almost half of the individuals aged 65 years and older are in the earliest stage of readiness to communicate with a physician. Given our younger sample, the proportion of adults from the age of 50 years in the early stage of readiness could be even greater. They suggested that to change this behaviour, the public awareness will need to be raised about the need and benefits of timely engagement in ACP and the potential negative consequences of failing to engage. Awareness campaigns on ACP can help public to overcome important barriers to engagement in ACP, including the perception that ACP is irrelevant or uniquely intended for frail or ageing populations. Awareness about and the use of ACP could encourage adults from the age of 50 to manage their own EOL care in the event of a medical emergency, especially since becoming a burden to others was often mentioned as an important concern about the EOL for them in the qualitative study. Research has shown that ACP is important not only because quality at the EOL improves for the individual when an advance plan exists (2,27) but also because it decreases the burden of care placed on the individual’s family and caregivers (19). People with a lower educational level might represent a target group for public educational interventions, as they were less likely to wanting to discuss the EOL with their FP in this study. Higher levels of education have been shown to have a positive effect on the likelihood of wanting information about EOL care, knowing the term ACP and having an ACP written down (13), which highlights the need for interventions that target vulnerable populations, such as people with a lower educational level. Conclusion The results of this mixed-method study suggest that although patients have thought about the EOL, and are willing to discuss this with their FP, patients and FPs identified different themes as triggers to initiate discussions about the EOL, which represents missed opportunities to timely engagement in ACP. FPs need to be more aware about patients’ specific preferences for discussing the EOL, but they also need to be stimulated to actively initiate patient-centred ACP discussions that can be achieved through continuous education. However, the process of encouraging participation of ACP must also occur on the population level and requires the development of a public health message that ACP could benefit all adults, and not only frail or older adults. Declaration Funding: The study was funded by departmental resources. Ethical approval: the research protocol was approved by the Commission of Medical Ethics of the University Hospital of Ghent (registration number: B670201420720). A signed informed consent was obtained from each participant before completion of the questionnaire and participation in the semi-structured interview. Conflict of interest: There have been no involvements that might raise the question of bias in the work reported or in the conclusions, implications, or opinions stated. References 1. Sudore RL , Fried TR . Redefining the “planning” in advance care planning: preparing for end-of-life decision making . Ann Intern Med 2010 ; 153 : 256 – 61 . Google Scholar CrossRef Search ADS PubMed 2. Brinkman-Stoppelenburg A , Rietjens JA , van der Heide A . The effects of advance care planning on end-of-life care: a systematic review . Palliat Med 2014 ; 28 : 1000 – 25 . Google Scholar CrossRef Search ADS PubMed 3. Howard M , Bernard C , Tan A , et al. Advance care planning: let’s start sooner . Can Fam Physician 2015 ; 61 : 663 – 5 . Google Scholar PubMed 4. Scott IA , Mitchell GK , Reymond EJ , et al. Difficult but necessary conversations—the case for advance care planning . Med J Aust 2013 ; 199 : 662 – 6 . Google Scholar CrossRef Search ADS PubMed 5. Gallagher R . An approach to advance care planning in the office . Can Fam Physician 2006 ; 52 : 459 – 64 . Google Scholar PubMed 6. Evans N , Costantini M , Pasman HR , et al. ; EURO IMPACT . End-of-life communication: a retrospective survey of representative general practitioner networks in four countries . J Pain Symptom Manage 2014 ; 47 : 604 – 619.e3 . Google Scholar CrossRef Search ADS PubMed 7. Lum HD , Sudore RL , Bekelman DB . Advance care planning in the elderly . Med Clin North Am 2015 ; 99 : 391 – 403 . Google Scholar CrossRef Search ADS PubMed 8. Brazil K , Carter G , Galway K , et al. General practitioners perceptions on advance care planning for patients living with dementia . BMC Palliat Care 2015 ; 14 : 14 . Google Scholar CrossRef Search ADS PubMed 9. De Vleminck A , Pardon K , Beernaert K , et al. How do general practitioners conceptualise advance care planning in their practice? A qualitative study . PLoS One 2016 ; 11 : e0153747 . Google Scholar CrossRef Search ADS PubMed 10. Glaudemans JJ , Moll van Charante EP , Willems DL . Advance care planning in primary care, only for severely ill patients? A structured review . Fam Pract 2015 ; 32 : 16 – 26 . Google Scholar CrossRef Search ADS PubMed 11. Conroy S , Fade P , Fraser A , et al. Guideline Development Group . Advance care planning: concise evidence-based guidelines . Clin Med . 2009 ; 9 : 76 – 9 . Google Scholar CrossRef Search ADS 12. System GH . Respecting Choices. Person-Centered Care . http://www. gundersenhealth.org/respecting-choices/ (accessed on 29 August 2016). 13. Teixeira AA , Hanvey L , Tayler C , et al. Canadian Researchers at End of Life Network (CARENET) . What do Canadians think of advanced care planning? Findings from an online opinion poll . BMJ Support Palliat Care 2015 ; 5 : 40 – 7 . Google Scholar CrossRef Search ADS PubMed 14. Mullick A , Martin J , Sallnow L . An introduction to advance care planning in practice . BMJ 2013 ; 347 : f6064 . Google Scholar CrossRef Search ADS PubMed 15. De Vleminck A , Houttekier D , Pardon K , et al. Barriers and facilitators for general practitioners to engage in advance care planning: a systematic review . Scand J Prim Health Care 2013 ; 31 : 215 – 26 . Google Scholar CrossRef Search ADS PubMed 16. Malcomson H , Bisbee S . Perspectives of healthy elders on advance care planning . J Am Acad Nurse Pract 2009 ; 21 : 18 – 23 . Google Scholar CrossRef Search ADS PubMed 17. Houben CH , Spruit MA , Schols JM , et al. Patient–clinician communication about end-of-life care in patients with advanced chronic organ failure during one year . J Pain Symptom Manage 2015 ; 49 : 1109 – 15 . Google Scholar CrossRef Search ADS PubMed 18. Rietjens JA , Korfage IJ , Dunleavy L , et al. Advance care planning—a multi-centre cluster randomised clinical trial: the research protocol of the ACTION study . BMC Cancer 2016 ; 16 : 264 . Google Scholar CrossRef Search ADS PubMed 19. Meeus P. General practice performance: a check up. Health service research (HSR) . Brussels : Rijksinstituut voor Ziekte- en Invaliditeitsverzekering (RIZIV) , 2012 (report in Dutch). 20. De Baere S , Deveugele M , Cosyns M. Ideas of patients regarding their the end of life and dying . Thesis. Ghent University 2008 . 48 p. ( in Dutch ). 21. Dierckx de Casterlé B , Gastmans C , Bryon E , et al. QUAGOL: a guide for qualitative data analysis . Int J Nurs Stud 2012 ; 49 : 360 – 71 . Google Scholar CrossRef Search ADS PubMed 22. Schickedanz AD , Schillinger D , Landefeld CS , et al. A clinical framework for improving the advance care planning process: start with patients’ self-identified barriers . J Am Geriatr Soc 2009 ; 57 : 31 – 9 . Google Scholar CrossRef Search ADS PubMed 23. Van den Heuvel LA , Spruit MA , Schols JM , et al. Barriers and facilitators to end-of-life communication in advanced chronic organ failure . Int J Palliat Nurs 2016 ; 22 : 222 – 9 . Google Scholar CrossRef Search ADS PubMed 24. Heyland DK , Barwich D , Pichora D , et al. Failure to engage hospitalized elderly patients and their families in advance care planning . JAMA Intern Med 2013 ; 173 : 778 . Google Scholar CrossRef Search ADS PubMed 25. Howard M , Bonham AJ , Heyland DK , et al. Measuring engagement in advance care planning: a cross-sectional multicentre feasibility study . BMJ Open 2016 ; 6 : e010375 . Google Scholar CrossRef Search ADS PubMed 26. Fried TR , Bullock K , Iannone L , et al. Understanding advance care planning as a process of health behavior change . J Am Geriatr Soc 2009 ; 57 : 1547 – 55 . Google Scholar CrossRef Search ADS PubMed 27. Wright AA , Zhang B , Ray A , , et al. Associations between end-of-life discussions, patient mental health, medical care near death, and caregiver bereavement adjustment . JAMA 2008 ; 300 : 1665 – 73 . Google Scholar CrossRef Search ADS PubMed © The Author(s) 2017. Published by Oxford University Press. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com. This article is published and distributed under the terms of the Oxford University Press, Standard Journals Publication Model (https://academic.oup.com/journals/pages/open_access/funder_policies/chorus/standard_publication_model) http://www.deepdyve.com/assets/images/DeepDyve-Logo-lg.png Family Practice Oxford University Press

Do non-terminally ill adults want to discuss the end of life with their family physician? An explorative mixed-method study on patients’ preferences and family physicians’ views in Belgium

Family Practice , Volume Advance Article (4) – Dec 20, 2017

Loading next page...
 
/lp/ou_press/do-non-terminally-ill-adults-want-to-discuss-the-end-of-life-with-0F8sXaECRR
Publisher
Oxford University Press
Copyright
© The Author(s) 2017. Published by Oxford University Press. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.
ISSN
0263-2136
eISSN
1460-2229
D.O.I.
10.1093/fampra/cmx125
Publisher site
See Article on Publisher Site

Abstract

Abstract Background Research about advance care planning (ACP) has often targeted those with serious illness and limited prognosis, thereby not addressing the preferences of healthy adults or adults with a stable condition. Aims (i) To describe to what extent patients aged 50 and older who are relatively stable or in good health are thinking about the end of life (EOL) and willing to discuss this with their family physician (FP) and (ii) to explore whether patients and FPs indicate the same topics as triggers for ACP discussions in family practice. Methods A cross-sectional study was conducted in a diverse sample of 289 patients aged ≥50 years in family practice in Flanders, Belgium. Subsequently, semi-structured interviews were conducted with patients (n = 5) and FPs (n = 5) to explore their preferences and views on ACP in family practice. Results The majority (69.8%) of patients had thought about the EOL and would appreciate it if their FP would initiate a conversation about this (75.9%). The qualitative interviews revealed that when thinking about the EOL, a number of themes captured the thoughts of people according to both patients and FPs: (i) becoming care dependent, (ii) physical and mental deterioration, (iii) dying alone and (iv) having paperwork in order. However, on the basis of patients’ ideas and FPs’ experiences in practice, a difference was noticed between them when it comes to identifying the themes as triggers for initiating ACP discussions. Conclusion Although patients are willing to discuss the EOL with their FPs, patients and FPs identified different themes as triggers to initiate discussions about the EOL. The variation in triggers could lead to missed opportunities to engage in ACP in a timely manner. Advance care planning, end-of-life care, family physicians, family practice, non-terminally ill patients, palliative care Introduction Advance care planning (ACP) is a communication process between individuals, their relatives and healthcare providers that allows competent patients to plan for future health care and end-of-life (EOL) care (1). ACP involves reflection and discussion about patients’ values, wishes and preferences regarding the care that will be considered appropriate for a time when patients can no longer make decisions for themselves. Studies have shown that ACP stimulates EOL conversations, reduces stress among surrogate decision makers, reduces life-sustaining therapies that are discordant with patient preferences and improves the quality of EOL care (2). Ideally, ACP is carried out as an ongoing process, and not a one-time decision, to better prepare patients and their relatives to make ‘in the moment’ medical decisions (3). Therefore, it is suggested that ACP is initiated in the primary care setting where patients are relatively healthy or when their condition is stable in anticipation of future ill-health (4). In many countries like Belgium, the Netherlands, the UK, Canada and the USA, primary care physicians and more specifically family physicians (FPs) are considered to be ideally suited to engage these patients in the process of ACP (5–8). The longitudinal relationship that FPs have with their patients, as well as a number of features inherent to most patient–FP relationships—trust, continuity of care and the ability to coordinate care across different setting—places them in a unique position to engage in conversations about future care. In Belgium, family practice is highly accessible and more than 95% of people have a fixed FP whom they visit regularly (with 78% seeing their FP at least once a year) (9). As in many countries, the FP is also one of the most important professional caregivers during the last years of life and, therefore, a well-placed person to take into account a person’s wishes and preferences regarding care (10). The importance of early conversations in primary care is also highlighted by evidence-based guidelines on ACP (11) and programmes such as the Respecting Choices Program (12) which recommend healthcare professionals to initiate ACP with people from the age of 50 at any stage of health. Adults from the age of 50 are a unique age group as they are often for the first time confronted with a serious or chronic illness, or with the ageing and dying of a close relative such as their parents, which are important triggers to start thinking about future health and EOL care (13,14). Studies show that people feel comfortable talking with their FP about medical treatment options concerning the EOL, and also that most people feel that their physician should start the conversation (15). However, the first discussions on ACP are rarely carried out in primary care and often occur during an acute hospitalization or nursing home admission (16). The barriers and facilitators to ACP for both patients and FPs are well documented (15), however, research has often targeted those with a limited life prognosis (17,18), thereby not addressing the preferences of healthy adults or adults with a stable condition aged 50 and older. It is unclear to what extent it is feasible to facilitate ACP in family practice in a group of older adults with diverse ages. Therefore, the aim of this study is to (i) describe to what extent patients aged 50 and older who are relatively stable or in good health are actually thinking about the EOL and willing to discuss this with their FP and determine the factors associated with these outcomes and (2) explore whether patients and FPs indicate the same topics as triggers for ACP discussions in family practice. Identifying the topics that are prioritized in a diverse group of older adults when thinking about the EOL might guide FPs in their efforts to engage a broader range of patients in ACP. Methods Study design and setting A mixed-method design was used. First, a cross-sectional study was conducted in a sample of 286 patients aged ≥50 years in family practice. Subsequently, semi-structured interviews were conducted with patients (n = 5) and FPs (n = 5) to explore the results of the cross-sectional study and to further explore patients’ thoughts on and FPs’ experiences with and views on communication about the EOL. This study took place in Flanders, Belgium, between April and August 2014. Recruitment of participants For the cross-sectional study, we recruited a convenience sample of patients attending two family group practices. The first family group practice consisted of four FPs, one FP-in-training, one dietician, a home care nurse and a secretary, serving a total of 3800 patients. The second family group practice consisted of three FPs, one FP-in-training and a secretary, serving a total of 5200 patients. Both family practices were located in rural areas. In Belgium, around 25% of full-time working FPs are working in group practices and the average number of patients per FP was estimated at 1003 in 2009 (19). Between 26 May and 12 September 2014 (study period), all the FPs from the two group practices were asked to approach the first 10 consecutive eligible patients at the end of each consultation on a daily basis, which resulted in a total of 308 completed questionnaires. Patients who were willing to participate had the option to either fill in the questionnaire immediately after their consultation with the FP in the waiting room or to fill in the questionnaire later at home and then return it to the family practice in person or by mail, where all questionnaires were collected by the researchers at the end of the study period. Eligible patients were 50 years and older, could read and speak Flemish and did not have a terminal illness or cognitive impairment. At the end of the questionnaire, all patients were asked whether they wanted to participate in a semi-structured interview. To obtain a broader and more comprehensive view about FPs’ experiences with ACP, we purposefully recruited participants from other family practices to obtain a sample of both female and male FPs, working in both solo and group practices and from practices located in an urban and rural area. The FPs were recruited by contacting them via the telephone. Owing to the limited time for this study, only five patients and five FPs could be interviewed. The interviews were arranged at a convenient time and place for the patients and FPs. Data collection For the cross-sectional study, we adapted a questionnaire previously developed and validated for use in patients aged ≥18 years in family practice to audit the attitudes of non-terminal patients regarding the EOL and how FPs could address these (20). The questionnaire was adapted with input from experts in healthcare communication and family practice. Besides socio-demographic and health-related characteristics, an overview of the self-administered questionnaire is outlined in Box 1. Possible responses were ‘Yes’ or ‘No’ for each question. Box 1: Patient questionnaire 1 a) Have you ever thought about the end-of-life or dying? b) Does thinking about the end-of-life makes you anxious? 2. a) Would you like to discuss the end-of-life or dying with your FP? b) Do you experience barriers when trying to discuss the end-of-life with your FP? c) Would you appreciate it if your FP brought up the topic of end-of-life? 3. a) Have you already made specific decisions regarding your own end-of-life or death? b) Would you consider it of added value if your decisions regarding the end-of-life would be documented on paper or if your FP would be aware of these decisions (and documents them in your medical file)? For the semi-structured interviews with patients and FPs, two separate interview guides were developed. Both covered four general themes (Box 2). At the beginning of the interviews, participants were informed about the study goals. The interviews lasted on average between 30 min and 1 h and were audiotaped, for which all participants gave their informed consent. Box 2: Qualitative interview guides Interview guide patients: 1. Reasons to think or not think about the end-of-life and death, 2. What topics patients would like to discuss with their FP regarding the end-of-life, 3. When patients would like to talk about these issues, 4. With whom these issues ideally should be discussed. Interview guide family physicians: 1. Experiences with discussing the end-of-life in family practice, 2. Feasibility of discussing the end-of-life with non-terminal patients ≥50 years, 3. Barriers and facilitators to engage in these discussions, 4. Perceptions about the results of the cross-sectional study. Analysis Characteristics of the patients were described as counts and percentages for categorical variables. Answers to the questionnaire were reported as percentage of patients. To explore the associations between socio-demographic and health-related characteristics and preferences on EOL communication, we conducted Pearson chi-square tests. Independent variables were sex, age, educational level, marital status, suffering from a chronic illness and the experience of a recent death of someone close to them. Dependent variables were as follows: ‘Ever thought about the EOL or dying’ (yes versus no) and ‘Wanting to discuss the EOL with their FP’ (yes versus no). When found significant (P < 0.05), the independent variables were entered in multivariable logistic regression models to control for confounding effects and investigate their association with the dependent variables. Confidence intervals were calculated at the 95% level. All analyses were performed using the SPSS 23.0 software. The interviews were transcribed verbatim and analysed using constant comparative analysis (21). Two researchers (DB and TD) familiarized themselves with the data by repeated reading of the transcripts and independently developing an open coding framework. Secondly, the open codes were clustered into broader categories. The views from two perspectives, i.e. patients and FPs, were compared to determine areas of agreement and divergence. Ongoing analysis led to the generation and refining of themes. Themes that were either mentioned by all or most participants were considered as more important and given more weight (Fig. 1), as well as themes that were explicitly identified as important by the respondents during the interviews. Finally, quotes were selected and approved by the research team to illustrate the results. Figure 1. View largeDownload slide Prioritization of themes as triggers to initiate advance care planning discussions, with the more important themes carrying more weight Figure 1. View largeDownload slide Prioritization of themes as triggers to initiate advance care planning discussions, with the more important themes carrying more weight Results Sample characteristics A total of 308 questionnaires were completed between May and September 2014, but only 286 were included for analysis. Twenty-two questionnaires were considered as ineligible because the respondents were younger than 50 years. See Table 1 for sample characteristics. Table 1. Sample characteristics of patients aged 50 years and older in family practice, 2014 (N = 286) Participant characteristics N (%) Gender  Man 139 (48.6)  Woman 144 (50.3) Age (years)  50–59 122 (43.0)  60–69 78 (27.5)  70–79 53 (18.7)  80+ 31 (10.9) Educational level  Primary education 7 (3.6)  Lower secondary 39 (20.2)  Higher secondary 104 (53.9)  Higher education 43 (22.3) Civil status  Single 80 (28.8)  Married or cohabiting 197 (71.1) Having children  Yes 239 (86.3)  No 38 (13.6) Having a chronic illness  Yes 153 (53.8)  No 127 (45.2) Experience of a recent death of someone close  Yes 104 (37.8)  No 171 (62.2) Participant characteristics N (%) Gender  Man 139 (48.6)  Woman 144 (50.3) Age (years)  50–59 122 (43.0)  60–69 78 (27.5)  70–79 53 (18.7)  80+ 31 (10.9) Educational level  Primary education 7 (3.6)  Lower secondary 39 (20.2)  Higher secondary 104 (53.9)  Higher education 43 (22.3) Civil status  Single 80 (28.8)  Married or cohabiting 197 (71.1) Having children  Yes 239 (86.3)  No 38 (13.6) Having a chronic illness  Yes 153 (53.8)  No 127 (45.2) Experience of a recent death of someone close  Yes 104 (37.8)  No 171 (62.2) Sums may not always amount to the total sample number because of missing values on variables. Percentages may not always add up to 100 because of rounding. Missing values: for gender, n = 3; for age, n = 2; for education, n = 93; for civil status, n = 9; for having children, n = 6; for having a chronic illness, n = 5; and for experience of a recent death, n = 11. View Large Table 1. Sample characteristics of patients aged 50 years and older in family practice, 2014 (N = 286) Participant characteristics N (%) Gender  Man 139 (48.6)  Woman 144 (50.3) Age (years)  50–59 122 (43.0)  60–69 78 (27.5)  70–79 53 (18.7)  80+ 31 (10.9) Educational level  Primary education 7 (3.6)  Lower secondary 39 (20.2)  Higher secondary 104 (53.9)  Higher education 43 (22.3) Civil status  Single 80 (28.8)  Married or cohabiting 197 (71.1) Having children  Yes 239 (86.3)  No 38 (13.6) Having a chronic illness  Yes 153 (53.8)  No 127 (45.2) Experience of a recent death of someone close  Yes 104 (37.8)  No 171 (62.2) Participant characteristics N (%) Gender  Man 139 (48.6)  Woman 144 (50.3) Age (years)  50–59 122 (43.0)  60–69 78 (27.5)  70–79 53 (18.7)  80+ 31 (10.9) Educational level  Primary education 7 (3.6)  Lower secondary 39 (20.2)  Higher secondary 104 (53.9)  Higher education 43 (22.3) Civil status  Single 80 (28.8)  Married or cohabiting 197 (71.1) Having children  Yes 239 (86.3)  No 38 (13.6) Having a chronic illness  Yes 153 (53.8)  No 127 (45.2) Experience of a recent death of someone close  Yes 104 (37.8)  No 171 (62.2) Sums may not always amount to the total sample number because of missing values on variables. Percentages may not always add up to 100 because of rounding. Missing values: for gender, n = 3; for age, n = 2; for education, n = 93; for civil status, n = 9; for having children, n = 6; for having a chronic illness, n = 5; and for experience of a recent death, n = 11. View Large Patients’ preferences for communication about the end of life The majority of patients (69.8%) indicated to already have thought about their EOL or dying and are willing to discuss this with their FP (62.3%) (see Table 2). 75.9% of patients also indicated that they would appreciate it if their FP would initiate the conversation and 17.3% of patients experience barriers to discuss the EOL with their FP. Although 65.1% of patients would consider it of added value that their end-of-life decisions (ELDs) are documented on paper or known by their FP, only 19.6% had already made specific ELDs for themselves. Table 2. Proportion of patients’ preferences for communication about the end of life Preferences for communication about the end of life Yes, N (%) Ever thought about their end of life or death 199 (69.8) Thinking about the end of life makes them anxious 81 (28.9) Wanting to discuss their thoughts on the end of life with their family physician 177 (62.3) Experiencing barriers to discuss the end of life with their family physician 48 (17.3) Would appreciate it if their family physician brought up the topic of end of life 214 (75.9) Already made specific decisions regarding their own end of life or death 56 (19.6) To consider it of added value if their end-of-life decisions would be documented on paper or known by their family physician 177 (65.1) Preferences for communication about the end of life Yes, N (%) Ever thought about their end of life or death 199 (69.8) Thinking about the end of life makes them anxious 81 (28.9) Wanting to discuss their thoughts on the end of life with their family physician 177 (62.3) Experiencing barriers to discuss the end of life with their family physician 48 (17.3) Would appreciate it if their family physician brought up the topic of end of life 214 (75.9) Already made specific decisions regarding their own end of life or death 56 (19.6) To consider it of added value if their end-of-life decisions would be documented on paper or known by their family physician 177 (65.1) Sums may not always amount to the total sample number because of missing values on variables. Percentages may not always add up to 100 because of rounding. Missing values: Ever thought about their end of life or death, n = 1; wanting to discuss their thoughts on the end of life with their FP, n = 2; would appreciate it if their FP brought up the topic of end of life, n = 4; experiencing barriers to discuss the end of life with their FP, n = 8; to consider it of added value if their end-of-life decisions would be documented on paper or known by their FP, n = 14; already made specific decisions regarding their own end of life or death, n = 0; and thinking about the end of life makes them anxious, n = 6. View Large Table 2. Proportion of patients’ preferences for communication about the end of life Preferences for communication about the end of life Yes, N (%) Ever thought about their end of life or death 199 (69.8) Thinking about the end of life makes them anxious 81 (28.9) Wanting to discuss their thoughts on the end of life with their family physician 177 (62.3) Experiencing barriers to discuss the end of life with their family physician 48 (17.3) Would appreciate it if their family physician brought up the topic of end of life 214 (75.9) Already made specific decisions regarding their own end of life or death 56 (19.6) To consider it of added value if their end-of-life decisions would be documented on paper or known by their family physician 177 (65.1) Preferences for communication about the end of life Yes, N (%) Ever thought about their end of life or death 199 (69.8) Thinking about the end of life makes them anxious 81 (28.9) Wanting to discuss their thoughts on the end of life with their family physician 177 (62.3) Experiencing barriers to discuss the end of life with their family physician 48 (17.3) Would appreciate it if their family physician brought up the topic of end of life 214 (75.9) Already made specific decisions regarding their own end of life or death 56 (19.6) To consider it of added value if their end-of-life decisions would be documented on paper or known by their family physician 177 (65.1) Sums may not always amount to the total sample number because of missing values on variables. Percentages may not always add up to 100 because of rounding. Missing values: Ever thought about their end of life or death, n = 1; wanting to discuss their thoughts on the end of life with their FP, n = 2; would appreciate it if their FP brought up the topic of end of life, n = 4; experiencing barriers to discuss the end of life with their FP, n = 8; to consider it of added value if their end-of-life decisions would be documented on paper or known by their FP, n = 14; already made specific decisions regarding their own end of life or death, n = 0; and thinking about the end of life makes them anxious, n = 6. View Large Factors associated with thinking about the end of life or dying and wanting to discuss this with the family physician Having previously thought about their own EOL or death was significantly more common among women, patients with a higher educational level and patients with children (Table 3). Patients aged between 50 and 69 years and patients with a higher educational level more often want to discuss their EOL with their FP. Table 3. Proportion of ‘thinking about the end of life or dying’ and ‘wanting to discuss the end of life with the family physician’ by socio-demographic characteristics of the patients Ever thought about the EOL or dying (yes versus no)a Wanting to discuss the EOL with their FP (yes versus no)a Patient characteristics N (%) P valueb N (%) P valueb Gender  Man 88 (63.8) 0.04 82 (59.4) 0.20  Woman 108 (75) 93 (65) Age (years)  50–59 88 (72.1) 0.18 77 (63.6) 0.04  60–69 58 (75.3) 54 (70.1)  70–79 33 (62.3) 31 (58.5)  80+ 18 (58.1) 13 (41.9) Educational level  Lower education 50 (61) 0.01 42 (51.9) 0.02  Technical education 46 (68.7) 42 (62.7)  Higher education 37 (86) 33 (76.7) Civil status  Single 56 (70) 1.00 48 (60) 0.36  Married or cohabiting 137 (69.9) 123 (63.1) Having children  Yes 174 (72.2) 0.02 151 (62.9) 0.23  No 20 (52.6) 21 (55.3) Having a chronic illness  Yes 108 (70.6) 0.79 95 (62.1) 0.51  No 87 (68.5) 79 (62.7) Recent death of someone close  Yes 69 (66.3) 0.50 58 (56.3) 0.09  No 120 (70.6) 111 (65.3) Ever thought about the EOL or dying (yes versus no)a Wanting to discuss the EOL with their FP (yes versus no)a Patient characteristics N (%) P valueb N (%) P valueb Gender  Man 88 (63.8) 0.04 82 (59.4) 0.20  Woman 108 (75) 93 (65) Age (years)  50–59 88 (72.1) 0.18 77 (63.6) 0.04  60–69 58 (75.3) 54 (70.1)  70–79 33 (62.3) 31 (58.5)  80+ 18 (58.1) 13 (41.9) Educational level  Lower education 50 (61) 0.01 42 (51.9) 0.02  Technical education 46 (68.7) 42 (62.7)  Higher education 37 (86) 33 (76.7) Civil status  Single 56 (70) 1.00 48 (60) 0.36  Married or cohabiting 137 (69.9) 123 (63.1) Having children  Yes 174 (72.2) 0.02 151 (62.9) 0.23  No 20 (52.6) 21 (55.3) Having a chronic illness  Yes 108 (70.6) 0.79 95 (62.1) 0.51  No 87 (68.5) 79 (62.7) Recent death of someone close  Yes 69 (66.3) 0.50 58 (56.3) 0.09  No 120 (70.6) 111 (65.3) EOL, end of life; FP, family physician; NS, not significant. aColumn percentages. bPearson chi-square test for differences between the two groups; P < 0.05 are given in bold. View Large Table 3. Proportion of ‘thinking about the end of life or dying’ and ‘wanting to discuss the end of life with the family physician’ by socio-demographic characteristics of the patients Ever thought about the EOL or dying (yes versus no)a Wanting to discuss the EOL with their FP (yes versus no)a Patient characteristics N (%) P valueb N (%) P valueb Gender  Man 88 (63.8) 0.04 82 (59.4) 0.20  Woman 108 (75) 93 (65) Age (years)  50–59 88 (72.1) 0.18 77 (63.6) 0.04  60–69 58 (75.3) 54 (70.1)  70–79 33 (62.3) 31 (58.5)  80+ 18 (58.1) 13 (41.9) Educational level  Lower education 50 (61) 0.01 42 (51.9) 0.02  Technical education 46 (68.7) 42 (62.7)  Higher education 37 (86) 33 (76.7) Civil status  Single 56 (70) 1.00 48 (60) 0.36  Married or cohabiting 137 (69.9) 123 (63.1) Having children  Yes 174 (72.2) 0.02 151 (62.9) 0.23  No 20 (52.6) 21 (55.3) Having a chronic illness  Yes 108 (70.6) 0.79 95 (62.1) 0.51  No 87 (68.5) 79 (62.7) Recent death of someone close  Yes 69 (66.3) 0.50 58 (56.3) 0.09  No 120 (70.6) 111 (65.3) Ever thought about the EOL or dying (yes versus no)a Wanting to discuss the EOL with their FP (yes versus no)a Patient characteristics N (%) P valueb N (%) P valueb Gender  Man 88 (63.8) 0.04 82 (59.4) 0.20  Woman 108 (75) 93 (65) Age (years)  50–59 88 (72.1) 0.18 77 (63.6) 0.04  60–69 58 (75.3) 54 (70.1)  70–79 33 (62.3) 31 (58.5)  80+ 18 (58.1) 13 (41.9) Educational level  Lower education 50 (61) 0.01 42 (51.9) 0.02  Technical education 46 (68.7) 42 (62.7)  Higher education 37 (86) 33 (76.7) Civil status  Single 56 (70) 1.00 48 (60) 0.36  Married or cohabiting 137 (69.9) 123 (63.1) Having children  Yes 174 (72.2) 0.02 151 (62.9) 0.23  No 20 (52.6) 21 (55.3) Having a chronic illness  Yes 108 (70.6) 0.79 95 (62.1) 0.51  No 87 (68.5) 79 (62.7) Recent death of someone close  Yes 69 (66.3) 0.50 58 (56.3) 0.09  No 120 (70.6) 111 (65.3) EOL, end of life; FP, family physician; NS, not significant. aColumn percentages. bPearson chi-square test for differences between the two groups; P < 0.05 are given in bold. View Large Multivariate analyses showed that educational level was the only significant factor: patients with a higher educational level were more likely to have previously thought about their EOL and dying (OR = 4.16, 95% CI 1.52–11.38), and to want to discuss this with their FP (OR = 2.97, 95% CI 1.22–7.25) when compared with patients with a lower educational level (Table 4). Table 4. Factors associated with thinking about the EOL or dying and wanting to discuss the EOL with the FP Ever thought about the EOL or dying (yes versus no)a Wanting to discuss the EOL with their FP (yes versus no)a Patient characteristics OR (95% CI) OR (95% CI) Gender  Man Ref –  Woman 1.67 (0.85–3.38) – Age (years)  50–59 – Ref  60–69 – 2.06 (0.90–4.75)  70–79 – 0.73 (0.31–1.73)  80+ – 0.58 (0.20–1.70) Educational level  Lower education Ref Ref  Technical education 1.53 (0.76–3.08) 1.55 (0.75–3.19)  Higher education 4.16 (1.52–11.38)* 2.97 (1.22–7.25)* Civil status  Single – –  Married or cohabiting – – Having children  Yes 1.45 (0.60–3.50) –  No Ref – Ever thought about the EOL or dying (yes versus no)a Wanting to discuss the EOL with their FP (yes versus no)a Patient characteristics OR (95% CI) OR (95% CI) Gender  Man Ref –  Woman 1.67 (0.85–3.38) – Age (years)  50–59 – Ref  60–69 – 2.06 (0.90–4.75)  70–79 – 0.73 (0.31–1.73)  80+ – 0.58 (0.20–1.70) Educational level  Lower education Ref Ref  Technical education 1.53 (0.76–3.08) 1.55 (0.75–3.19)  Higher education 4.16 (1.52–11.38)* 2.97 (1.22–7.25)* Civil status  Single – –  Married or cohabiting – – Having children  Yes 1.45 (0.60–3.50) –  No Ref – EOL, end of life; FP, family physician; OR, odds ratio; ref, reference category. aOdds ratio with 95% confidence interval from multivariate logistic regression models. *P < 0.05 are given in bold. View Large Table 4. Factors associated with thinking about the EOL or dying and wanting to discuss the EOL with the FP Ever thought about the EOL or dying (yes versus no)a Wanting to discuss the EOL with their FP (yes versus no)a Patient characteristics OR (95% CI) OR (95% CI) Gender  Man Ref –  Woman 1.67 (0.85–3.38) – Age (years)  50–59 – Ref  60–69 – 2.06 (0.90–4.75)  70–79 – 0.73 (0.31–1.73)  80+ – 0.58 (0.20–1.70) Educational level  Lower education Ref Ref  Technical education 1.53 (0.76–3.08) 1.55 (0.75–3.19)  Higher education 4.16 (1.52–11.38)* 2.97 (1.22–7.25)* Civil status  Single – –  Married or cohabiting – – Having children  Yes 1.45 (0.60–3.50) –  No Ref – Ever thought about the EOL or dying (yes versus no)a Wanting to discuss the EOL with their FP (yes versus no)a Patient characteristics OR (95% CI) OR (95% CI) Gender  Man Ref –  Woman 1.67 (0.85–3.38) – Age (years)  50–59 – Ref  60–69 – 2.06 (0.90–4.75)  70–79 – 0.73 (0.31–1.73)  80+ – 0.58 (0.20–1.70) Educational level  Lower education Ref Ref  Technical education 1.53 (0.76–3.08) 1.55 (0.75–3.19)  Higher education 4.16 (1.52–11.38)* 2.97 (1.22–7.25)* Civil status  Single – –  Married or cohabiting – – Having children  Yes 1.45 (0.60–3.50) –  No Ref – EOL, end of life; FP, family physician; OR, odds ratio; ref, reference category. aOdds ratio with 95% confidence interval from multivariate logistic regression models. *P < 0.05 are given in bold. View Large Qualitative results A total of 10 interviews were conducted, involving 5 patients (3 women) and 5 FPs (4 men). The patients’ age ranged from 54 to 72 years. Of these patients, one woman suffered from chronic diabetes and had limited mobility, one woman was a patient with heart failure (stage 2) and one man was a recovering cancer patient, but all considered their condition as stable at that moment. The two other participants had an overall good health status. The FPs’ age ranged from 37 to 65 years. Their FP practices were located in both rural and urban regions and consisted of both solo and group practices. When thinking about the EOL, four interrelated themes captured the thoughts of people aged ≥50 years according to patients and FPs: care dependency, physical and mental deterioration at the EOL, dying alone and having the paperwork in place. In contrast to the quantitative results, no differences were noticed or mentioned according to patients’ sex or educational level. However, based on patients’ ideas and FPs’ experiences in practice, a difference was noticed between them when it comes to identifying suitable and relevant themes for initiating ACP discussions (see Fig. 1). Becoming care dependent When thinking about their own EOL, all patients—regardless of age or sex—reported to worry about becoming care dependent of others. Some patients were concerned about becoming too much of a burden on their partner or children; others mentioned having no next of kin or no eligible family members to take care of them at the EOL as the underlying reason for not wanting to become care dependent: My husband has a borderline disorder and I can already hardly burden myself on him. My only son has uncontrolled diabetes, is divorced and can barely take care of himself. I do wonder sometimes who will take care of me? (Patient 3: women, 72 years, diagnosis of heart failure.) In that case, I would have no fears about the end of life. I would know that there is always someone there for me that also would do anything for me (When asked what would be different if she wouldn’t have a quarrel with her daughter; Patient 2: woman, 60 years.) Although this topic was mentioned by all patients, only one FP in this study indicated the concern of becoming care dependent and the associated fear of being a burden as a theme that is sometimes in practice, and more specifically for older people: Some older people feel they are a burden to society or to their family and then they start to think about their end of life. Physical and mental deterioration Commonly identified by patients and FPs as an important thought, but again mostly for older adults according to the FPs, was a fear of physical and mental decline at the EOL. Specifically, the fear of getting dementia or being in pain and suffering was often mentioned as a concern for people by both groups of participants. For two patients, this thought was again motivated by the idea of not wanting to become a burden on others: I don’t want to suffer. And when the time comes, I want (the FP) to help me, so that I’m not suffering and I don’t lie there like a plant. I don’t want to fight against the pain. (Man, 56 years.) When I grow old, I want to grow old in a good way. It may be less for me physically, but deteriorating mentally and becoming demented and dependent on others, that makes me anxious. (Patient 1: woman, 57 years, diagnosis of diabetes.) Most of the interviewed patients also (vaguely) mentioned a preference for no unnecessary life-prolonging treatments in case of severe physical and/or mental decline at the EOL, which was confirmed by the FPs as common in their practice when discussing this theme: Especially the fear to be in pain and suffering. They hope to be able to die in a peaceful way and to have a little bit of control over it. They also fear of getting more treatments than necessary. They say that they don’t want to get dementia and that when they are demented they want to put an end to it. But if you explore that deeper, the question often turns out to be different. It’s then more about certain worries patients have and what the quality of life is for someone with dementia. Dying alone Two patients indicated that the thought of dying alone worried them. Patients’ recollections of a previously experienced death of someone close to them influenced how they thought about this situation. In contrast, this theme was not identified in the narratives of the FPs as something that is discussed in family practice with regard to the EOL: One of the things I worry about is that I don’t want to die alone. I know that for such things I will be alone because I am single. It could be that something happens to me and no one will find me. . . . Yes, that makes me think about the end of life sometimes. (Patient 1: woman, 57 years, diagnosis of diabetes.) My father passed away four years ago. He died on Christmas day, here at home. A nurse put him in bed, he had drunk a glass of champagne and ate some toasts on Christmas Eve. In hindsight, that was actually a beautiful death. The whole family was here. I would like that too. (Patient 2: woman, 60 years.) Having their paperwork in place According to the FPs, one of the most common initiated topics in family practice by patients aged between 50 and 70 years regarding the EOL, as opposed to older patients, is euthanasia and more specifically the advance directive on euthanasia. As one physician explained: We do get more and more questions about euthanasia from patients around the age of 50 and 60 years ‘wanting to have their paperwork in place’. Often, this is in response to the death of someone close to them in a way they would never want, or something they have seen on television or read in the paper. Although identified as an important theme according to the FPs, only one of the interviewed patients had already completed an advance directive regarding the refusal of specific treatments at the EOL as well as on euthanasia, which were both completed with his FP’s help. Some other patients already had their funeral arrangements and a financial will in place, but did not mention the advance directives on the refusal of specific treatments or euthanasia. Discussion This study showed that, in a sample of 286 patients aged 50 years and older, the majority (69.8%) had thought about the EOL and would appreciate it if their FP would initiate a conversation about this (75.9%). People with a higher educational level were more likely to have thought about the EOL and wanting to discuss this with their FP. We further explored the opportunities of discussing ACP by asking both patients and FPs what concerns people of 50 years and older with regard to the EOL. Four interrelated themes captured the thoughts of people according to patients and FPs: care dependency, physical and mental deterioration at the EOL, dying alone and having the paperwork in order. Although patients and FPs identified similar topics as triggers to discuss ACP, a difference was noticed when it came to prioritizing the themes as reasons to initiate a talk. Several studies have addressed the barriers and facilitators for initiating ACP in family practice, both from patients’ and FPs’ perspectives (10,15). However, few studies have looked at a healthy or stable patient population aged 50 and older, who are according to evidence-based guidelines an eligible group to conduct the first steps of ACP with such as raising awareness about ACP, informing them of options and exploring patients’ values (11,14). This may encourage them to manage EOL issues with their own ageing parents and relatives and start planning for their own EOL care. Other important strengths of the study include the relatively large sample size of patients in the cross-sectional study and the use of a validated questionnaire about attitudes of non-terminal patients regarding the EOL in Flanders, Belgium. The cross-sectional study showed that the majority of people have thought about the EOL and would appreciate it if their FP would initiate a conversation about this, but by using a mixed-methodology design, we were able to further explore these results in a qualitative way and identify both patients’ and FPs’ views on the topics that people are concerned with when thinking about the EOL. Although we interviewed a heterogeneous group of FPs and patients in terms of age, sex and health status, no difference could be noticed according to these socio-demographic factors. The small sample size presents a limitation to the study and the results should be interpreted as explorative. Secondly, as a result of the recruitment procedure for the interviews (i.e. patients who participated in the cross-sectional study), some participants might have had an increased interest in the topic. Hence, further qualitative research in a larger sample is recommended. We found that only 17.3% of patients in the cross-sectional study indicated experiencing barriers for discussing the EOL with their FP. However, the qualitative data revealed that although patients often think about topics such as becoming care dependent and the fear of physical and mental deterioration at the EOL, these are not often discussed in family practice. On the one hand, it might be that for particular topics patients either feel uncomfortable discussing them or expect their FP to initiate discussions about this (22,23). A recent Canadian study of current ACP practices in elderly and seriously ill, hospitalized patients showed that although more than 75% had thought about the care they would want at the EOL, more than 90% had discussed their preferences with other family members, and less than 30% had discussed this with their doctor (24). Similar results were found in a multicentre study on the engagement in ACP of patients aged 50 years and older in primary care. Of those patients who talked to someone about which medical treatments were wanted or not at the EOL, 92% had talked to family members while only 18% had talked to their family doctor (25). On the other hand, a systematic review on the barriers for FPs to initiate ACP found stronger evidence for the FP’s attitude that patients should initiate discussions (15). Remarkably, many studies show that patients believe it is the physician’s responsibility, which demonstrates a gap in expectations between patients and FPs. This study adds to these findings by showing that one of the reasons patients and FPs wait for the other to start discussing the EOL might be that patients and FPs prioritize different themes as triggers to discuss ACP. This problem can be tackled in a number of ways. First, FPs should be more aware about the topics that capture patients’ thoughts when thinking about the EOL, which can be done through educational training for FPs. Secondly, most patients indicated in our survey to appreciate it if their FP would initiate conversations about the EOL, suggesting that a more active role for FPs could enhance more patient-centred ACP, adapted to patients needs and own experiences. As the population is aging, the number of people living and dying with chronic life-limiting disease is increasing. These illness trajectories are often accompanied by complex medical (EOL) decision making, in which surrogate decision makers will play a more prominent role as the number of people living with dementia is also rising. To anticipate this, it is important that FPs actively initiate ACP with a younger or healthier population. FPs are usually cognizant of both physical and non-physical domains of a patient’s health; so, the time-consuming nature of ACP conversations can possibly be limited by initiating ACP in family practice. Gallagher (5) has outlined how FPs can actively engage in ACP by incorporating ACP appointments in the office setting and provide accurate information about ACP and pro-actively asking questions about patients’ values, beliefs and goals to initiate EOL conversations. Thirdly, public information campaigns can also play an important role in increasing ACP communication in family practice. In the present study, we observed that although most patients have thought about the EOL, they have not actively taken the step to discuss these thoughts with their FP. Fried et al. (26) have demonstrated that almost half of the individuals aged 65 years and older are in the earliest stage of readiness to communicate with a physician. Given our younger sample, the proportion of adults from the age of 50 years in the early stage of readiness could be even greater. They suggested that to change this behaviour, the public awareness will need to be raised about the need and benefits of timely engagement in ACP and the potential negative consequences of failing to engage. Awareness campaigns on ACP can help public to overcome important barriers to engagement in ACP, including the perception that ACP is irrelevant or uniquely intended for frail or ageing populations. Awareness about and the use of ACP could encourage adults from the age of 50 to manage their own EOL care in the event of a medical emergency, especially since becoming a burden to others was often mentioned as an important concern about the EOL for them in the qualitative study. Research has shown that ACP is important not only because quality at the EOL improves for the individual when an advance plan exists (2,27) but also because it decreases the burden of care placed on the individual’s family and caregivers (19). People with a lower educational level might represent a target group for public educational interventions, as they were less likely to wanting to discuss the EOL with their FP in this study. Higher levels of education have been shown to have a positive effect on the likelihood of wanting information about EOL care, knowing the term ACP and having an ACP written down (13), which highlights the need for interventions that target vulnerable populations, such as people with a lower educational level. Conclusion The results of this mixed-method study suggest that although patients have thought about the EOL, and are willing to discuss this with their FP, patients and FPs identified different themes as triggers to initiate discussions about the EOL, which represents missed opportunities to timely engagement in ACP. FPs need to be more aware about patients’ specific preferences for discussing the EOL, but they also need to be stimulated to actively initiate patient-centred ACP discussions that can be achieved through continuous education. However, the process of encouraging participation of ACP must also occur on the population level and requires the development of a public health message that ACP could benefit all adults, and not only frail or older adults. Declaration Funding: The study was funded by departmental resources. Ethical approval: the research protocol was approved by the Commission of Medical Ethics of the University Hospital of Ghent (registration number: B670201420720). A signed informed consent was obtained from each participant before completion of the questionnaire and participation in the semi-structured interview. Conflict of interest: There have been no involvements that might raise the question of bias in the work reported or in the conclusions, implications, or opinions stated. References 1. Sudore RL , Fried TR . Redefining the “planning” in advance care planning: preparing for end-of-life decision making . Ann Intern Med 2010 ; 153 : 256 – 61 . Google Scholar CrossRef Search ADS PubMed 2. Brinkman-Stoppelenburg A , Rietjens JA , van der Heide A . The effects of advance care planning on end-of-life care: a systematic review . Palliat Med 2014 ; 28 : 1000 – 25 . Google Scholar CrossRef Search ADS PubMed 3. Howard M , Bernard C , Tan A , et al. Advance care planning: let’s start sooner . Can Fam Physician 2015 ; 61 : 663 – 5 . Google Scholar PubMed 4. Scott IA , Mitchell GK , Reymond EJ , et al. Difficult but necessary conversations—the case for advance care planning . Med J Aust 2013 ; 199 : 662 – 6 . Google Scholar CrossRef Search ADS PubMed 5. Gallagher R . An approach to advance care planning in the office . Can Fam Physician 2006 ; 52 : 459 – 64 . Google Scholar PubMed 6. Evans N , Costantini M , Pasman HR , et al. ; EURO IMPACT . End-of-life communication: a retrospective survey of representative general practitioner networks in four countries . J Pain Symptom Manage 2014 ; 47 : 604 – 619.e3 . Google Scholar CrossRef Search ADS PubMed 7. Lum HD , Sudore RL , Bekelman DB . Advance care planning in the elderly . Med Clin North Am 2015 ; 99 : 391 – 403 . Google Scholar CrossRef Search ADS PubMed 8. Brazil K , Carter G , Galway K , et al. General practitioners perceptions on advance care planning for patients living with dementia . BMC Palliat Care 2015 ; 14 : 14 . Google Scholar CrossRef Search ADS PubMed 9. De Vleminck A , Pardon K , Beernaert K , et al. How do general practitioners conceptualise advance care planning in their practice? A qualitative study . PLoS One 2016 ; 11 : e0153747 . Google Scholar CrossRef Search ADS PubMed 10. Glaudemans JJ , Moll van Charante EP , Willems DL . Advance care planning in primary care, only for severely ill patients? A structured review . Fam Pract 2015 ; 32 : 16 – 26 . Google Scholar CrossRef Search ADS PubMed 11. Conroy S , Fade P , Fraser A , et al. Guideline Development Group . Advance care planning: concise evidence-based guidelines . Clin Med . 2009 ; 9 : 76 – 9 . Google Scholar CrossRef Search ADS 12. System GH . Respecting Choices. Person-Centered Care . http://www. gundersenhealth.org/respecting-choices/ (accessed on 29 August 2016). 13. Teixeira AA , Hanvey L , Tayler C , et al. Canadian Researchers at End of Life Network (CARENET) . What do Canadians think of advanced care planning? Findings from an online opinion poll . BMJ Support Palliat Care 2015 ; 5 : 40 – 7 . Google Scholar CrossRef Search ADS PubMed 14. Mullick A , Martin J , Sallnow L . An introduction to advance care planning in practice . BMJ 2013 ; 347 : f6064 . Google Scholar CrossRef Search ADS PubMed 15. De Vleminck A , Houttekier D , Pardon K , et al. Barriers and facilitators for general practitioners to engage in advance care planning: a systematic review . Scand J Prim Health Care 2013 ; 31 : 215 – 26 . Google Scholar CrossRef Search ADS PubMed 16. Malcomson H , Bisbee S . Perspectives of healthy elders on advance care planning . J Am Acad Nurse Pract 2009 ; 21 : 18 – 23 . Google Scholar CrossRef Search ADS PubMed 17. Houben CH , Spruit MA , Schols JM , et al. Patient–clinician communication about end-of-life care in patients with advanced chronic organ failure during one year . J Pain Symptom Manage 2015 ; 49 : 1109 – 15 . Google Scholar CrossRef Search ADS PubMed 18. Rietjens JA , Korfage IJ , Dunleavy L , et al. Advance care planning—a multi-centre cluster randomised clinical trial: the research protocol of the ACTION study . BMC Cancer 2016 ; 16 : 264 . Google Scholar CrossRef Search ADS PubMed 19. Meeus P. General practice performance: a check up. Health service research (HSR) . Brussels : Rijksinstituut voor Ziekte- en Invaliditeitsverzekering (RIZIV) , 2012 (report in Dutch). 20. De Baere S , Deveugele M , Cosyns M. Ideas of patients regarding their the end of life and dying . Thesis. Ghent University 2008 . 48 p. ( in Dutch ). 21. Dierckx de Casterlé B , Gastmans C , Bryon E , et al. QUAGOL: a guide for qualitative data analysis . Int J Nurs Stud 2012 ; 49 : 360 – 71 . Google Scholar CrossRef Search ADS PubMed 22. Schickedanz AD , Schillinger D , Landefeld CS , et al. A clinical framework for improving the advance care planning process: start with patients’ self-identified barriers . J Am Geriatr Soc 2009 ; 57 : 31 – 9 . Google Scholar CrossRef Search ADS PubMed 23. Van den Heuvel LA , Spruit MA , Schols JM , et al. Barriers and facilitators to end-of-life communication in advanced chronic organ failure . Int J Palliat Nurs 2016 ; 22 : 222 – 9 . Google Scholar CrossRef Search ADS PubMed 24. Heyland DK , Barwich D , Pichora D , et al. Failure to engage hospitalized elderly patients and their families in advance care planning . JAMA Intern Med 2013 ; 173 : 778 . Google Scholar CrossRef Search ADS PubMed 25. Howard M , Bonham AJ , Heyland DK , et al. Measuring engagement in advance care planning: a cross-sectional multicentre feasibility study . BMJ Open 2016 ; 6 : e010375 . Google Scholar CrossRef Search ADS PubMed 26. Fried TR , Bullock K , Iannone L , et al. Understanding advance care planning as a process of health behavior change . J Am Geriatr Soc 2009 ; 57 : 1547 – 55 . Google Scholar CrossRef Search ADS PubMed 27. Wright AA , Zhang B , Ray A , , et al. Associations between end-of-life discussions, patient mental health, medical care near death, and caregiver bereavement adjustment . JAMA 2008 ; 300 : 1665 – 73 . Google Scholar CrossRef Search ADS PubMed © The Author(s) 2017. Published by Oxford University Press. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com. This article is published and distributed under the terms of the Oxford University Press, Standard Journals Publication Model (https://academic.oup.com/journals/pages/open_access/funder_policies/chorus/standard_publication_model)

Journal

Family PracticeOxford University Press

Published: Dec 20, 2017

There are no references for this article.

You’re reading a free preview. Subscribe to read the entire article.


DeepDyve is your
personal research library

It’s your single place to instantly
discover and read the research
that matters to you.

Enjoy affordable access to
over 18 million articles from more than
15,000 peer-reviewed journals.

All for just $49/month

Explore the DeepDyve Library

Search

Query the DeepDyve database, plus search all of PubMed and Google Scholar seamlessly

Organize

Save any article or search result from DeepDyve, PubMed, and Google Scholar... all in one place.

Access

Get unlimited, online access to over 18 million full-text articles from more than 15,000 scientific journals.

Your journals are on DeepDyve

Read from thousands of the leading scholarly journals from SpringerNature, Elsevier, Wiley-Blackwell, Oxford University Press and more.

All the latest content is available, no embargo periods.

See the journals in your area

DeepDyve

Freelancer

DeepDyve

Pro

Price

FREE

$49/month
$360/year

Save searches from
Google Scholar,
PubMed

Create lists to
organize your research

Export lists, citations

Read DeepDyve articles

Abstract access only

Unlimited access to over
18 million full-text articles

Print

20 pages / month

PDF Discount

20% off