Does a Half-Day Course about Palliative Care Matter? A Quantitative and Qualitative Evaluation among Health Care Practitioners

Abstract

Background:

To date there has been a paucity of research examining whether a course in palliative care influences the clinical work. Therefore a half-day course was started for different professionals.

Objectives:

The aims of this study were to quantitatively and qualitatively explore professionals' experience of the usefulness and importance of such a course.

Design:

An evaluation study was used with two measurement points in the quantitative part; qualitative focus group interviews were conducted three times.

Setting and Subjects:

Data was collected in Sweden through structured and open-ended questions (n=355) and in focus group discussions (n=40).

Results:

The majority of participants were allied professionals (86%). Course evaluation immediately after the intervention showed high scores. At three months, 78% of the 86 participants who had cared for a dying patient since the course claimed that the course had been useful in their work. In addition, there were improvements regarding symptom management (37%), support to family members (36%), more frequent break point conversations (31%), and improved cooperation in the teams (26%). The qualitative analysis showed that the course made participants start to compare their own working experiences with the new knowledge. When returning to work, the participants feel strengthened by the the newly acquired knowledge, but the will to improve the care also led to frustration, as some of the participants described that they wanted to change routines in the care of the dying, but felt hindered.

Conclusion:

The course was appreciated and useful in the professionals' work, but it also created problems.

Introduction

The percentage of countries providing one or more hospices and/or palliative care services has increased from 49% of countries worldwide in 2006 to 58% in 2011.¹ Despite this expansion of palliative care,² dying patients still do not receive appropriate care.³ Globally, 30 million people suffer unnecessarily each year, and 100 million people worldwide would have improved quality of life if today's knowledge about palliative medicine was applied to all those in need of it.⁴ A gap exists between the needs of dying patients and the available palliative care, and this gap will widen unless proper action is taken. In tune with an increasingly aging population, there will be progressively more people in need of good end-of-life care. Consequently, palliative care must be integrated broadly across the health care services, regardless of the illness or care context.⁵

In some countries there have been campaigns and programs to improve end-of-life care.^3,6 In Sweden, specialized palliative care started with a home-based hospice program in 1977. This model spread over the country in the following decades,⁷ but the principles and knowledge of palliative care did not spread to all those in need of it, i.e., to nursing homes and hospital beds (where approximately 70% of patients were dying) or to all the staff caring for them.^8,9 A gap emerged between the citizens' need for palliative care and those who had the tools. Health care and the dying individuals' needs has been the subject of Swedish governmental reports^5,8,10,11 in recent decades. In Sweden, the political objective of palliative end-of-life care is given the highest priority.¹¹ Despite this, the availability of palliative care in the end-of-life stage is unevenly distributed geographically and its quality is also poorly mapped.¹² The political objective of the county of Östergötland in Sweden is that good palliative care should progressively become available to the wider intended group, regardless of where the care is given.¹³ But this assumes that knowledge of the principles of palliative care must be transferred from one specialized clinic to another, as palliative care specialists are carriers of this knowledge.

In accordance with the above mentioned political objective, physicians and nurses at the Palliative Education and Research Centre in the county of Östergötland have, since 2004, trained more than 8000 health care professionals in different care contexts in the so-called “general palliative course,” in an attempt to bridge this gap between staff who are not specialized in palliative care and those who are specialists. Prior studies^14–16 in this area have focused on specific professionals and on specific patient groups with different educational or course efforts. We wanted to have a team-based, time-effective intervention that would lead to improvement in knowledge of end-of-life care, useful in clinical practice.

The overriding aim of this study was to explore professionals' experience of the usefulness and importance of a half-day general course in palliative care in their work of caring for dying patients.

The specific aims were (1) to quantitatively explore health professionals' perceptions of the usefulness and importance of the course after course completion and after three months, and (2) to qualitatively study the experiences of and the influence the course has on participating health care professionals who care for dying individuals in their daily work.

Methods

General course in palliative care

The “general course” was a short single course (three hours) held in groups (25 people) to create conditions for dialogue and interaction. Half of the time was lectures and the other half was group discussions about cases. Tutors were senior palliative consultants and nurses. The goal of the intervention was to enlighten and to foster the tenets of palliative care, with contents about palliative care philosophy and definitions, the regional political objective of palliative care, turning ethical principles into practice, patients' perspective and needs, and decisions and actions in transition to palliative end-of-life care. The target population was staff members in nursing homes, communities, hospitals, and primary care, i.e., home help workers, assistant nurses, nurses, physicians, occupational therapists, physiotherapists, social workers, head nurses, and administrative occupations. The care units were either private or municipal.

Sampling, data collection, and analysis

The course was evaluated quantitatively and qualitatively by using questionnaires with both structured and open-ended questions and focus groups. The setting was the county of Östergötland in the southeast of Sweden (population approximately 420,000). Data were collected during April to July 2008. Inclusion criteria for participants were (1) to be a care professional working in a hospital, nursing home, or home care (2) to participate in one course during spring 2008. Exclusion criteria were (1) not fluent in the Swedish language and (2) did not complete the full course.

Quantitative data

A questionnaire was constructed by the authors to explore participants' perceptions of the usefulness and importance of the course regarding the pedagogical aspects, the content, time used, and the expected benefits of the intervention for the participants in their daily work (Likert-type 1–5 scale, ranging from “do not agree” to “totally agree”). The participants were asked to fill in the questionnaire directly after the interventional course. An extended questionnaire (Likert-type 1–5 scale) was sent to the participants after three months without reminder, with additional questions on team cooperation, break point dialogue, symptom management, and support to family members, as well as two open-ended questions. Quantitative data were analyzed statistically using χ² (Statistica 7.1 [StatSoft, Inc., Tulsa, OK]).

Qualitative data

Staff members were asked to participate in the focus group interviews by their head nurse, who was instructed to choose participants to form a varied sample as regards occupation, age, and gender. Focus group interviews were conducted three times: before the intervention and three months and six months after. The interviews were conducted by a senior nurse in palliative care and a researcher in palliative care. None of the interviewers had been involved in the course intervention or had had personal or professional contact with the interviewees. The interviewers took different roles: a facilitator and a transcriber role.¹⁷ The facilitator role involved guiding the discussion. The transcriber made observations and took notes, asked follow-up questions, and ended the session by giving a summary of the content of the discussion and then inviting the participants to give positive and negative feedback to the summary. The interview guide focused on perceptions of palliative care, positive/negative experiences of working with dying people, and expectations of the course intervention. In the second and third interviews the participants were asked if the course intervention had changed their everyday practice with dying patients, and if so, in what way. In this paper, data from the second and third interview will be presented. Staff members were asked to fill in a short questionnaire about background variables and two open-ended questions to enable them to add aspects of the course that they might not want to reveal in the focus group.

The focus group interviews were transcribed verbatim and analyzed using qualitative content analysis.^18,19 Three of the authors first read through the interview text and analyzed it separately (identification of meaning units, coding, and preliminary categorization). This was followed by a discussion about their separate preliminary categories. Closely related categories were merged together and descriptions of the content of the final categories were developed. The results were finally discussed at a seminar with all authors.

Results

Quantitative evaluation

Evaluation immediately after the course intervention

The study population consisted of 356 participants (86% allied professionals) in 24 course groups (see Table 1). Participants (RR 99.7%) evaluated the course immediately after the course, with high scores (Likert 4–5) on design, contents, and usefulness (see Table 2).

Table 1.

Sociodemographic Data of Participants Responding to the Questionnaire Immediately after the Course and at Three Months after the Course

	Immediately after the course n=355		Three months after the course n=134
Gender
Females/males	327/27		126/8
Age in years
n/%
≤25	49	14	6	4
26–40	133	37	41	31
41–55	141	40	55	41
≥56	24	7	28	21
Did not respond	8	2	4	3
Occupation
n/%
Home help	92	26	40	30
Assistant nurse	212	60	70	52
Nurse	26	7	12	9
Physician	9	2	4	3
Other	16	5	8	6
Did not respond	0	0	0	0
Working place
n/%
Community home care	117	33	49	37
Long-term living	173	49	69	52
Short-term living	13	4	3	2
Primary care	21	6	10	7
Hospital	5	1	2	1
Did not respond	26	7	1	1
Working experience in years n/%
≤5	62	17	27	20
6–15	145	41	47	35
≥16	147	41	60	45
Did not respond	1	1	0	0

Table 2.

Course Evaluation Immediately after the Course (N=355)

	The design of the course was “satisfying” n/%	The content of the course was “satisfying” n/%	Usefulness of course in my work in the future n/%	The division between lecture and discussion was “satisfying” n/%
1: Do not agree	0/0	0/0	0/0	1/∼0
2	4/1	4/1	6/2	7/2
3	20/6	20/6	20/6	15/4
4	88/25	85/24	80/22	91/26
5: Fully agree	243/68	246/69	249/70	241/68

Evaluation three months after the course intervention

Course participants (n=134, RR 41%) responded to the questionnaire that was posted three months after the intervention. The characteristics of the participants are presented in Table 1. Drop-out analyses showed no apparent differences between responders and nonresponders regarding sex (χ²; p=0.37), occupation (p=0.94), type of workplace (p>0.99), age (p=0.52), and work experience (p=0.91).

After three months, 67% of the 134 responders still perceived that the course had been useful for them in their work. Of the 134 participants, 86% had worked with dying patients since the course. A majority of those (78%) claimed that the course had been useful (Likert 4–5) in their work. In addition, improvements were stressed regarding team cooperation around patients (26%), more frequent break point dialogue (31%), improved symptom management (37%), and support to family members during the palliative phase (36%), but there were no apparent shifts concerning these issues (see Table 3).

Table 3.

Evaluation Three Months after the Course Intervention of the 86 Staff Members that had Experience in Caring for Palliative Patients after the Course (scale 1-5)

Statements	“The course has been useful in my work” (n/%)	“Cooperation in the team around patients has improved” (n/%)	“Break point dialogue has become more frequent” (n/%)	“Symptom management in the palliative phase has improved” (n/%)	“Support to family members during the palliative phase has improved” (n/%)
Median	4	3	3	3	3
1: Do not agree	1/1	1/1	4/5	5/6	2/3
2	0/0	1/1	2/3	0/0	1/1
3	18/21	58/72	45/61	45/57	46/60
4	39/45	17/21	15/20	17/22	21/27
5: Fully agree	28/33	4/5	8/11	12/15	7/9

Qualitative evaluation

The qualitative evaluation resulted in three main categories, which are described below. In total, 40 participants were interviewed in 13 focus group interviews (see Table 4). In the interviews, I represents the interviewer and P1, P2, etc. are participants in a specific focus group.

Table 4.

Sociodemographic Data of Participants in Focus Groups, N=40

Gender (males/females), n	3/37
Occupation, n
home help	5
assistant nurse	23
nurse	11
physician	0
other	1
Age 23–62 years; mean 36; md 40
Working experience with dying patients 0–30 years; mean 14; md 16
Response to the question, “How many dying patients have you cared for in the last 12 months?”
–0	2
1–5	21
6–10	8
≥11	9

md, median.

To conquer new knowledge or not?

There were different experiences concerning learning outcomes. A few participants had not learned anything new at all. Others described that although the content was familiar, they perceived that previously forgotten knowledge had come to mind again, which they positively valued. Another experience concerned receiving new knowledge, such as conceptualizing familiar patient-related situations in everyday work. These were situations that the participants often needed to talk about in their daily work but previously could not put into words. Receiving a new concrete concept, e.g., a break point conversation, facilitated such discussions about patient-related situations.

In addition to conceptual knowledge, participants described getting new insight into the complexity of palliative care. Through the discussion with the educators and in the group they gained a deeper understanding for the patients', families', and other team members' different perspectives. This could relate to when to treat or not, communication about patients' and families' suffering and need for information, and how physicians coped with the difficult task of breaking bad news.

“P1: Well, this break point dialogue was very interesting.

P2: Yes…

P3: I agree on that.

P1: To truly know when it's time to start active treatment (antibiotics) or when it's only symptom management and such things.”

To compare and ask new questions

During the course the participants listened to the educators' knowledge and experience in working with dying patients and their families, as well as that of the other participants. This made them start to compare their own experiences, as they had time to think and discuss difficult and serious questions in relation to their work. Such comparisons often concerned practical issues, e.g., how frequently one should turn a patient or moisten his or her mouth when there were only a few days left. Through this kind of discussion they began to ask new questions about their work, for example: Why do families react as they do? What are you allowed to do in your specific profession? What kind of influence do hierarchies have on care? The comparison continued when they returned to their work. If patients should have company in their last phase of life, why are they left alone on our ward?

“I: Is there anything else that you feel or remember was important?

P1: I think that this… when you sat down afterwards and talked….

P2: And discussed with other people from different kind of wards. Everybody shared a bit f their experience and how they wanted to solve these patient cases. I thought this was so sensible.”

To gain strength but also frustration

When returning to work, the participants feel strengthened by the new acquired knowledge. The educators were perceived as experts, which guaranteed the quality of the course training. During the course they also recognized similarities in the provision of care for dying patients with care for other participants. Now they had more confidence in their professionalism in palliative care and felt more certain they were doing ”right” in the care of the dying.

The knowledge and new insight influenced their daily work when they met dying patients and their families. They were more motivated and inspired to improve the palliative care.

The will to improve the care also led to frustration, as participants described that they wanted to change routines in the care of the dying but felt they were hindered in doing so. Conflict arose between available resources and the will to make improvements. Some participants described how they realized that there were strong barriers; for example, when a patient needed someone to watch over him or her in the last hours of life, there were economic issues that hindered this. Before this course, the participants had been working without considering these kinds of questions, but the course caused them to start reflecting on their personal responsibility for care. They had gained an insight into something that they could do nothing about. But they also realized that they needed more reflection.

“All district nurses went (to the course) but none of our physicians. It would have been valuable to discuss the break point dialogue with them, as this is not used as a routine. In return this might lead to insecurity in the care of the patient.”

Discussion

This study concluded that a short general course in palliative care was appreciated by most participants, quantitatively and qualitatively. They felt they were strengthened and had increased their knowledge. After three months, 67% still perceived benefits from the course training. This effect was even greater if the participants previously had experience in caring for dying persons.

This study is not the only one that has evaluated a palliative care course.¹⁶ The study by Thulesius covered a longer training period than the current study. Our study contributes with the knowledge that a short course training benefits participants' work three months later. Maybe this is due to a combination of content and discussions based on experiences? According to Kolb,²⁰ an interaction occurs between content and experience that is transforming and involves changes in perception. However, another study by Kruse had a three-group experimental design that tested the efficacy of nurse-led hospice collaboration involving classroom-only instruction, a combination of classroom and hospice experiences, and a control group. No significant differences were found between the three groups, but the intervention group showed increased guilt about not having enough time to spend with the dying.²¹ These findings could be compared with the qualitative results in the current study, where participants after the course experienced frustration about not having the possibility to do what they wanted to do in terms of palliative care quality improvement. These qualitative results also suggest an explanation for the quantitative postcourse results at three months, indicating that the course had been useful at an individual level but not at a team level (e.g., cooperation, break point conversation). This means that it is important that professionals get new knowledge as they become aware of the needs of a dying person; but at the same time they experience frustration if they work in an organization that does not support changes. Similar results have previously been reported, i.e., lack of resources and lack of supportive leadership.²² It is important that the head of the organization also receives the same knowledge and that there are some steering documents that guide their organization.

Allied professionals are a unique study population, expected to provide end-of-life care in nursing homes even though they have the shortest education. Previous studies have shown that this group is unprepared to provide end-of-life care,²³ to talk about death and having to deal with their own emotions, and to assess and manage pain and other nonmalignant conditions.²⁴ There is, therefore, a need to emphasize leadership and support to allied professionals so that they can improve the quality of care for dying patients.²⁵ It is also vital to them to gain knowledge on how to deal with frustration when not being listened to by their counterparts.

There have also been discussions about whether one single course training might be enough to change participants' perceptions. One study concluded that one course session was insufficient and that the course needs to be ongoing to change knowledge, perceptions, and finally practice.²⁶ Easom and colleagues²⁷ used classroom presentations to change knowledge, attitudes, and perceptions of nurses about what constitutes a ‘‘good death.’’ Their posttest scores were higher than the pre-test scores after receiving a classroom educational intervention. Perhaps greater changes in perception in the current study would have occurred if the classroom and clinical experiences had been repeated over several sessions.

This study was aimed at all patients in need of palliative care and all staff in need of palliative care knowledge. According to the quantitative results of the study, only 86 participants had experienced a patient's death since the course. Even if professionals previously have not had such an experience, they need knowledge to prepare themselves to be able to manage end-of-life care when it is required.

Forty percent of the dying people in the county of Östergötland are spending their last days outside hospitals. However these studies involved only a few participants from primary care and a limited number of physicians. Physicians play a vital role in palliative care and have a need for further education in palliative care but often lack supervision and emotional support.^28,29 Did the lack of physicians participating in the course contribute to the results concerning no apparent shifts in team cooperation, break point conversation, symptom management, and support to family members? End-of-life care competencies seem more challenging to teach,³⁰ but it is possible to succeed with interventions.^31,32

This study has several limitations; it is not a controlled randomized trial and has a low response rate. However, it mixes quantitative and qualitative data, which is a strength.

To conclude, this study has shown that a short general course in palliative care was perceived as valuable by the majority of allied professionals. However, only a few physicians participated in the course, which is a shortcoming if “good palliative care” is to become available to all citizens in need of it.

Footnotes

Author Disclosure Statement

No competing financial interests exist.

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