Respondent characteristics
The online survey was accessed 1002 times, and 854 participants consented to use their answers/data and filled out the questionnaire. The final number of participants differed per question. Of the participants, 87% were female, 55% were older than 51 years, 28% worked in home care, 21% worked in a hospital and almost 18% worked in a hospice setting (Table 1). Most participants had a profession as a bachelor or vocational trained nurse or physician. 32% of respondents had more than 20 years of work experience in palliative care. 33% of the respondents provided palliative care to more than 60 patients annually. 74% of the respondents followed additional training for palliative care.
Table 1 Summary of respondents characteristics (N=854)
Self-description: generalist, specialist, or expert?
Based on the descriptions of generalist, specialist, and expert palliative care in the Netherlands Quality Framework for Palliative Care (NQFPC, box 1), most respondents described themselves as either a specialist or an expert: based on education, this was respectively 31% and 38%. The number of participants who described themselves as specialist or expert, based on work experience, was respectively 34% and 44% (table 2). 17% of the respondents described themselves as a generalist based on work experience and 25% described themselves as a generalist based on education.
Table 2 Self-description by healthcare professionals of their role, based on work experience and based on education
Table 3 shows a significant difference in self-description when self-description is based on education or work experience (p<0.001). 23% of the participants gave a different self-description in terms of generalist, specialist, or expert in palliative care if the basis was education or work experience; 70% of the participants gave the same self-description when this was based on education or work experience.
Table 3 Comparison of self-description of work experience and education
Comparison of generalist versus specialist and expert
Table 4 shows the differences and similarities between self-described generalists and specialists/experts. It also distinguishes self-description based on education from self-description based on work experience.
Generalists were often nurse assistants or nurses on a vocational level, while specialists and experts were more often Bachelor Nurses or physicians.
Generalists and specialists/experts all worked in different healthcare settings. Generalists worked more often in nursing homes than specialists/experts, who mostly worked in hospitals and hospices. In other work settings, only minor differences were seen between percentages of generalists versus specialists/experts. Specialists/experts had significantly more years of work experience in general care and palliative care than generalists. This counts for specialists/experts based on education and specialists/experts based on work experience.
Specialists/experts saw more patients with a palliative need annually than generalists; this counted for both specialists/experts based on education and for specialists/experts based on work experience. More than 90% of the specialists/experts followed additional training, as compared to 64% of the self-described generalists. Specialists/experts mostly followed a postgraduate education: nurses (51%) and physicians (28%). Of the respondents who received the same training, some described themselves as generalists, whereas others described themselves as specialists/experts.
Table 4 Background characteristics of self-described generalists in palliative care versus self-described specialists or experts in palliative care
The distinction between specialists and experts in palliative care
The importance of having specialized expertise in palliative care
Respondents were asked whether they find it important to have specialists and experts in palliative care (question 14). 76% of all respondents answered that having specialists and experts in palliative care is important. There was no difference in answers between respondents describing themselves as generalists (76%) or specialists/experts (76%) based on education and respondents describing themselves as generalists (76%) or specialists/experts (75.5%) based on work experience. They were asked to provide further explanation by means of an open question (question 15). Respondents described the importance of collaboration and consultation between generalists, specialists, and experts to the quality of palliative care: “Through good cooperation with specialists and experts, palliative care will increase in quality. Especially when it becomes a recognized position within the care provision” (Clinical nurse specialist, self-description: specialist).“Good cooperation is very important between generalist and specialist and between specialist and expert. They must consult each other timely, be aware of their boundaries, and know their limits when someone else needs to be called in” (Bachelor Nurse, self-description: specialist).
The distinction between the palliative care specialist and expert
Respondents were asked to further explain their answers about the distinctive elements of the role of specialist and expert (question 15). Many respondents maintain there is overlap in the role of specialist and expert. Respondents distinguished specialists from experts by mentioning that the expert has outstanding competencies in a specific area of palliative care, is fully committed to palliative care, and has a leading role in consultation, research, and in palliative care initiatives. “For me, a palliative care expert is someone who, in addition to providing good palliative care, also shows responsibility in optimizing palliative care at the meso and macro level. Examples are developing transmural care pathways, setting up training courses for nurses to become specialists, initiating quality projects, and participating in projects. The expert has a consultation function, access to a multidisciplinary network, and can work in an interprofessional team” (Physician, self-description: specialist). ). ”I think the cooperation between the specialist, who is executive, and the expert who coordinates and advises is important” (Physician, self-description: generalist).
Some respondents, however, argue that specialists also have a leading role, whereas experts distinguish themselves by fully focusing in palliative care: “Specialists mainly have a leading role in organizing palliative care in the department, and the surplus of experts is that they have palliative care as their core business” (Physician, self-description: expert). Finally, some respondents indicated that experts do not necessarily have patient contact, whereas others think they do.
Furthermore, respondents considered long-term work experience to be a requirement of being an expert. For instance, as a nurse argued: “Not only by education but also by work experience you make the step from specialist to expert. You become an expert not only through theoretical knowledge but also through work experience” (Bachelor Nurse, self-description: expert).
Yet, respondents (including respondents that answered yes to the statement that the distinction between specialist and expert is important) also considered the distinction between the role of specialist and expert as ambiguous and arbitrary and even doubted the existence of this distinction: “In my opinion, the difference between a specialist and an expert is difficult to distinguish, and the question is whether it is necessary. What is paramount is the cooperation between specialists and experts in executive, consulting, and continuing tasks”’. (Vocational level, self-description: expert). “I still find it difficult to use this dichotomy. Especially because I have a specialist education and sufficient experience (5 years) and am involved in both medium and highly complex situations, but I work part-time as a district nurse and part-time as an expert in palliative care. How should I describe myself?” (Bachelor Nurse, self-description: no description).“I think it is a very arbitrary distinction. In practice, we do not use the terms that way either. You have a generalist and you have a specialist. It would be best if you did not also want to add an expert in the field of work” (Physician, self-description: specialist).
Importance of clarity about education and work-experience
Some respondents argued for the necessity of additional training to become a specialist or an expert in palliative care. They stressed that it should be very clear which competencies are trained, and for which role you are being trained. As one respondent noted: “Now it is easy to say that someone specializes in palliative care, but what education or training did they receive for that? Sometimes this is said after a few hours of training ”(Bachelor Nurse, self-description: generalist).
Respondents also described that education level plays a role in becoming a specialist or expert; they mentioned that only HCPs with higher graduate education, such as bachelor nurses, clinical nurse specialists, and physicians, can become specialists or experts. “It is a difficult distinction between specialist and expert. Maybe the level of education in general? Only clinical nurse specialists and physicians can become specialists or experts ”(Physician, self-description: specialist).
The importance of clarity and recognition of educational programs is stressed: “The palliative care courses [should be] legally recognized with an official title” (Bachelor Nurse, describes himself as a specialist), and: “There are so many different courses in palliative care. Create an unambiguous curriculum” (Bachelor Nurse, describes himself as a specialist). “Which (accredited) education and work experience you must have to describe yourself as a specialist or expert is, in my opinion, not determined; it helps if we determine this” (Physician, self-description: specialist).
Finally, respondents stressed the importance of an unambiguous profile for specialists and experts, which is recognized nationally: “Establish a national professional profile for specialists and palliative care experts.”