Early identification of patients in need of palliative care in slovenian general practice

In June 2016, invitations to participate in this study were sent to 240 recipients of the Slovenian Family Medicine Journal in the Ljubljana area, all being registered GPs. Because of the lack of responses, another 39 GPs from all over Slovenia, of whom the email addresses were know by one of the authors (DRP), were invited one month later. All responses were gathered in July and August 2016.

Participating GPs were randomized into four groups and were sent the matching questionnaire through the valid online software application CastorEDC. Each questionnaire contained the same four case vignettes based on real patients’ cases that were adapted to guarantee anonymity. The vignettes were written in English and described one organ failure patient (Vignette A), one terminal oncology patient (Vignette B), one frail elderly patient with dementia (Vignette C), and one incurable, but not yet terminal oncology patient (Vignette D) (Appendix 1). GPs in the first group were only asked whether they would plan any care for each of these patients. Those who decided to initiate care were asked to describe their care plan in detail. The GPs in group 2 were asked to answer SQ1. GPs in groups 3 and 4 were asked to answer SQ1 and SQ2 before answering the questions as described for the first group. GPs in group 4 were also shown the problem square (PS), a document designed to help structuring multidimensional care planning (Figure 1), before describing their care plan (20). Lastly, GPs were asked which aspects generally trigger them to start PC, and they were asked to give their opinion on the helpfulness and usefulness of the SQs and PS. The care plans and opinion section could be written in English or in Slovenian. Slovenian answers were translated to English by an independent, native Slovenian speaker.

Figure 1

The open text content of each PC plan was quantified into a numeric score, the RADboud ANTicipatory (RADIANT) score, by one author (C.K.), using a score form (Figure 2). The form was developed by researchers from the Radboud university medical centre based in the Netherlands, on the WHO definition of PC and Dutch palliative care guidelines (21,22,23,24). The maximum score was 20 points.

Figure 2

The primary outcome measure was the answer combination given to SQ1 and SQ2 in relation to the RADIANT scores for each care plan. The secondary outcome measures were:

Differences in RADIANT scores between the four study groups and between the four vignettes.

All calculations were made using IBM SPSS software version 22. Significance testing was not performed because of the explorative nature of this study with a limited number of subjects.

297 GPs were invited to participate in this study. 35 (11.8%) agreed to participate, and 26 (8.8% of total, 74% of those who agreed) actually completed the survey (Figure 3). The participants’ characteristics are shown in Table 1.

Figure 3

Table 1

Characteristics of participants.

In group 2, all participants (n=8) answered SQ1 with ‘no’ for each vignette (Table 2). In groups 3 (SQ1 and SQ2) and 4, (SQ1, SQ2 and PS) the patient B (terminal oncology patient) was the only patient for whom all GPs gave the answer combination no + yes (they would not be surprised if the patient died and would be surprised if the patient was still alive in 12 months). For the patient C (frail elderly patient with dementia), none of the GPs in group 3, and only 1 GP in group 4, gave this answer combination. In groups 3 and 4, the mean RADIANT scores were slightly higher for GPs who would be surprised if the patient was still alive in 12 months, compared to the GPs who would not be surprised if the patient was still alive in 12 months.

Table 2

Answer combinations to SQ1+SQ2 and mean RADIANT scores per case vignette.

RADIANT scores were highest in group 2 (SQ1) and lowest in group 1 (no SQs). When comparing the RADIANT scores for the different vignettes, vignette B (terminal oncology case) scored higher than the other vignettes. Overall, the highest RADIANT score was found for vignette B in groups 2 (SQ1) and 4 (SQ1, SQ2 and PS). In all groups, RADIANT scores were higher for plans written in Slovenian compared to those written in English (Table 3).

Table 3

Mean RADIANT scores

RADIANT score: RADboudANTicipatory score, a scoring method to quantify the open text content of palliative care plans made by GPs.

The highest proportion of anticipatory care plans (40–80%) was made by GPs in group 4 (SQ1, SQ2 and PS), and the lowest (25–50%) in group 2 (SQ1) (Table 4). When comparing the proportions of anticipatory care in the different vignettes, the patient B (terminal oncology patient) scored highest (40–80%), and the patient C (frail elderly patient with dementia) scored lowest (20–40%).

Table 4

Proportions of reactive and anticipatory palliative care plans.

The somatic dimension was most often included in the PC plans in all study groups (75%-95%) and all vignettes (65-100%), while the social/financial dimension was least mentioned within the different study groups (5-25%) and in vignettes B (terminal oncology patient) (19%) and D (advanced stage, but not yet terminal oncology patient) (12%). The existential/psychological dimension was least explored in vignettes A (organ failure patient) (4%) and C (frailty elderly with dementia) (8%). Group 1 (no SQs) shows the highest proportions of PC plans including all four aspects of multidimensional PC (9%), while none of the PC plans in group 4 (SQ1, SQ2 and PS) included all four aspects (Table 5).

Table 5

Multidimensional care.

GPs were triggered to start PC in case of a terminal or incurable disease, like cancer or dementia, and symptoms, like pain, dyspnoea, weight loss and immobility. The second trigger were social aspects like ‘loss of independence,’ ‘absence of the next of kin,’ ‘powerlessness of relatives’ or ‘lack of home care and support.’

Seventeen of the eighteen GPs who were asked SQ1 and all ten GPs who were asked the combined SQ found the tools helpful. However, four GPs had some concerns about the usefulness of either SQ1 or the combined SQs in daily practice (Figure 4). All five GPs in group 4 (SQ1, SQ2, PS) considered the PS to be a helpful tool for planning multidimensional PC.

Figure 4

In this study, the terminal oncology patient was most often identified as being likely to die within a year and, therefore, received the most elaborate care. The frail elderly patient suffering from dementia was least expected to die within 12 months and was allocated less anticipatory and multidimensional care. This is in concordance with a systematic review by Gardiner et al. that mentions the delayed recognition of the palliative transition in non-cancer patients (11). Evans et al. found that organ failure and old-age/dementia patients received PC less frequently than cancer patients. They also found that old-age/dementia patients, the group of patients most likely to lose decision-making capacity, had the least end-of-life discussions and anticipatory care planning (10).

A study with the same methodology was recently performed among Dutch GPs. The mean RADIANT scores in this Dutch study ranged from 4.9 to 8.9 and are noticeably higher than the Slovenian mean scores ranging from 2.2 to 3.6 (21).

The mean RADIANT scores were higher for the care plans written in Slovenian than for the plans written in English. It is likely that some of the subtler treatment descriptions and nuances in the care plans were lost in translation or misinterpreted due to different meanings of words in different languages.

The differences in RADIANT scores between the Dutch and Slovenian studies lie within the anticipatory and psychosocial aspects of the care plans. Dutch GPs discussed patients’ aspects of quality of life, goals, and preferences more frequently than Slovenian GPs. In addition, Slovenian GPs scored fewer points on the social/financial and existential/psychological dimensions of multidisciplinary care. In this Slovenian study, treatment limitations, preferences for end-of-life care, dying scenarios and preferred places of death were never mentioned. This might be because Slovenian GPs did not consider discussing these topics as treatment and, therefore, did not include them in the care plan. Another possibility is that Slovenian GPs are less prone to discuss these topics due to differences between Dutch and Slovenian laws regarding matters as palliative sedation, euthanasia and advance directives. There are also cultural differences regarding health care, in general, and PC, in particular. In 2002, Lunder and Cerv wrote the following about PC in Slovenia: There has been long subjugation of the country to another’s rule. In the period of socialism, death was pushed into the sphere of the private, and the Church. There was no interest in the development of public institutions, like palliative care wards in hospitals or hospices (25). Ten years later, a study regarding psychosocial care in cancer patients concluded that the need for further development of psychosocial care in Slovenia is still underestimated, but first attempts are being made to fill this gap (26).

There is much to gain in terms of PC education since this subject takes up only 8 hours in the general curriculum of the University of Ljubljana, and 15 hours for the University of Maribor (27). Another point of attention is the content of PC education programs. Findings from an international review show that concepts of pain management are being well addressed, but current undergraduate curricula may not adequately explore issues of broader symptom control, and psychosocial and spiritual aspects of care (28). The need and wish for these educational initiatives is also mentioned by Chang et al. (29). Furthermore, they are reflected in the self-assessed scores for PC skills (6.5 out of 10), interest in PC (8.3 out of 10), and the proportion of GPs who indicated to have plans to improve their PC skills (90%). Unfortunately, the number of PC experts willing to work as PC providers or teachers is insufficient according to the EAPC (27). Nonetheless, in Slovenia, PC education initiatives have been developed in both undergraduate and postgraduate programs. Several courses are organized to provide doctors and other healthcare professionals with special knowledge and skills in PC (30).

The participants mentioned multiple physical and social aspects that trigger them to initiate PC. Similar aspects were mentioned by Dutch and British GPs in two separate studies (1, 17). The SQs were considered to be helpful tools for the identification of patients in need of PC. Concerns about the usefulness of the SQs included the difficulty of the prediction of prognosis, especially in noncancer patients, and uncertainty about how to interpret the answers to the SQs. This uncertainty regarding interpretation is apparent in other studies as well. The SQ is often used as a prognostication tool to predict 1-year mortality while it was developed as a tool to identify patients with PC needs (15,16,17). The last concern was regarding the communication with the patient once the GP has considered the SQs. Communication has been mentioned before as a barrier for the early initiation of PC (8, 9, 31). The positive opinions regarding the PS are mirrored by recent research by Thoonsen et al., in which GPs stated that this PS helped them consider actual and possible future problems, needs and scenarios regarding all dimensions of PC (32). Surprisingly, this current study shows no effect of the use of the PS on the multidimensionality of the care plans. In fact, group 4 was the only group in which none of the care plans mentioned all four dimensions of PC.

The strength of this study lies in the fact that it combines the original SQ with a second SQ and a PS. This approach does not only help GPs to identify patients who are at high risk to deteriorate and die, but also triggers them to start multidisciplinary and anticipatory PC.

Unfortunately, due to the small number of participants, the results of this pilot study could not be subjected to significance testing, so any of the differences found might be due to chance. Another limitation is that the vignettes and score form were developed for use among Dutch GPs. This might explain the low RADIANT scores, low response rate and low number of GPs who actually completed the survey. The length of the survey also seemed to have a negative influence on participation, since less surveys were completed in groups 3 and 4, in which the survey contained more questions than in groups 1 and 2. The timing of the study was not ideal either, since the invitations and surveys were sent in July and August, when many GPs were on holidays.