Jpn J Clin Oncol 2014;44(8)718 – 728 doi:10.1093/jjco/hyu075 Advance Access Publication 19 June 2014

A Japanese Region-wide Survey of the Knowledge, Difficulties and Self-reported Palliative Care Practices Among Nurses Kazuki Sato1,*, Yoko Inoue1, Megumi Umeda2, Ichie Ishigamori3, Ayumi Igarashi4, Sei Togashi5, Kumiko Harada6, Masako Miyashita6, Yumi Sakuma7, Junko Oki7, Ritsuko Yoshihara8 and Kenji Eguchi9 1

Department of Palliative Nursing, Health Sciences, Tohoku University Graduate School of Medicine, Sendai, Miyagi, Palliative Care Partners, Tokyo, 3Department of Nursing, Faculty of Medical Sciences, Teikyo University of Science, Tokyo, 4Department of Adult Health Nursing/Palliative Care Nursing, School of Health Sciences and Nursing, Graduate School of Medicine, The University of Tokyo, Tokyo, 5Department of Discharge Planning and Community Coordination, Tsuruoka Municipal Shonai Hospital, Tsuruoka, Yamagata, 6Department of Psycho-Oncology, National Cancer Center Hospital, East Kashiwa, Chiba, 7Palliative Care Team, Division of Nursing, Seirei Mikatahara General Hospital, Hamamatsu, Shizuoka, 8Consortium for Home Health Care in Nagasaki, University of Nagasaki, Nagasaki, Japan and 9 Division of Medical Oncology, Teikyo University School of Medicine, Tokyo, Japan 2

Received April 3, 2014; accepted May 7, 2014

Objective: We investigated palliative care knowledge, difficulty and self-reported practice among a region-wide sample of nurses who cared for cancer patients in Japan. Methods: A cross-sectional questionnaire survey was distributed to 9 designated cancer centers, 17 community hospitals and 73 district nurse services across 4 regions in 2008. We used the Palliative Care Knowledge Test, the Palliative Care Difficulty Scale (fivepoint Likert scale) and the Palliative Care Self-Reported Practices Scale (five-point Likert scale). Results: In total, 2378 out of 3008 nurses (79%) responded. The knowledge, difficulty and self-reported practice scores were 51 + 20%, 3.2 + 0.7 and 3.7 + 0.6, respectively. In the knowledge test, philosophy scored highest (88 + 26%) and psychiatric problems scored lowest (37 + 29%). In the difficulty test, alleviating symptoms scored most difficult (3.5 + 0.8) and providing expert support scored least difficult (2.9 + 1.3). In the self-reported practice questionnaire, pain and delirium relief were most frequently (4.0 + 0.8) and least frequently (3.1 + 0.9) provided, respectively. Knowledge was significantly poorer in community hospitals (P ¼ 0.035); difficulty scores were significantly higher in community hospitals (P , 0.001) and district nurse services (P ¼ 0.013); and self-reported practice scores were significantly poorer in community hospitals (P , 0.001) but superior in district nurse services (P , 0.001) than in designated cancer centers. Conclusions: Knowledge, difficulty and self-reported practice for symptom management, particularly psychological symptoms, were insufficient, particularly in community hospitals. Education, expert support and adequate clinical experiences would help provide quality palliative care. Key words: palliative care – nurse – health knowledge – attitude – practice – neoplasm – terminal care

# The Author 2014. Published by Oxford University Press. All rights reserved. For Permissions, please email: [email protected]

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*For reprints and all correspondence: Kazuki Sato, 2-1 Seiryo-machi, Aobaku, Sendai, Miyagi 980-8575, Japan. E-mail:[email protected]

Jpn J Clin Oncol 2014;44(8)

INTRODUCTION

PATIENTS AND METHODS The OPTIM study is a mixed-methods study of a regional palliative care intervention for patients with cancer (27). This trial was undertaken in four regions of Japan with different palliative care systems: Tsuruoka (Yamagata prefecture), Kashiwa (Chiba prefecture), Hamamatsu (Shizuoka prefecture) and Nagasaki (Nagasaki prefecture). In 2008, the total population estimates and cancer deaths across the four regions were 2.1 million and 5.4 thousand individuals, respectively. Tsuruoka represented a city where palliative care was not organizationally delivered. Meanwhile, Kashiwa, Hamamatsu and Nagasaki represented cities with palliative care organized by a national cancer center, a community hospital and a regional general practitioner association, respectively. All co-operative hospitals, general practice

clinics, district nurse services (home-visit nursing care stations) and other health care organizations participated in this study. The endpoint of the OPTIM study was to measure nurses’ palliative care knowledge, difficulty and self-reported practice with cancer patients before and after study intervention. Here, we reported the pre-intervention outcomes measured in February 2008. Nurses were recruited from hospitals and district nurse services. All nurses working in cancer-related specialties and all district nurses with 3 years or more of clinical experience were eligible for inclusion. Questionnaires were sent via the research office to each hospital and district nurse service for all nurses who met inclusion criteria. Management staff then distributed and collected the questionnaires from the participants at each institute. After a month, the questionnaires were resent to all subjects as a reminder. Finally, the management staffs retuned the complete questionnaires to the research office. The ethical and scientific validity was confirmed by the institutional review board of this study and the boards of all participating hospitals. Our study was completed in accordance with the ethical guidelines for Epidemiological Research by the Ministry of Health, Labour and Welfare. Written informed consent was considered unnecessary. MEASUREMENTS We measured palliative care-related knowledge, difficulty and self-reported practice with cancer patients as well as the participants’ characteristics. THE PALLIATIVE CARE KNOWLEDGE TEST The validity and reliability of the scale were confirmed in a development paper (29). This test measured 5 knowledge subscales comprising 20 items in total: philosophy (2 items), pain (6 items), dyspnea (4 items), psychiatric problems (4 items) and gastrointestinal problems (4 items). Possible responses were ‘right’, ‘wrong’ and ‘unsure.’ High average percentages of correct answers suggested greater knowledge about palliative care. THE PALLIATIVE CARE DIFFICULTY SCALE The validity and reliability of the scale were confirmed in a development paper (30). This scale measured 5 difficulty subscales comprising 15 items in total: alleviating symptom (3 items), expert support (3 items), communication in multidisciplinary teams (3 items), communication with the patient and family (3 items) and Community coordination (3 items). Each item assessed the difficulty using a Likert scale from 1 (never) to 5 (very much). High scores suggested greater perceived difficulty. THE PALLIATIVE CARE SELF-REPORTED PRACTICES SCALE The validity and reliability of the scale were confirmed in a development paper (30). This scale measured 7 practice subscales comprising 19 items in total: pain (3 items), dyspnea (3 items), delirium (3 items), dying-phase care

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Palliative care is an essential part of cancer care. However, a nationwide post-bereavement survey in Japan revealed a high rate of poor symptom management and unmet spiritual needs in designated cancer centers compared with that in palliative care units and home hospices (1). A region-wide survey uncovered that many health professionals, particularly nurses, had a lack of confidence in providing palliative care (2). Inadequate palliative care is a common problem for cancer patients (3–6). A lack of palliative care knowledge and skills among health professionals is a common barrier to the provision of optimal care (7 – 9). One representative survey in Lebanon reported inappropriate knowledge, attitude and practice among palliative care nurses (10), but it was limited by the failure to use standardized and validated questionnaires. Nationwide surveys have also uncovered insufficient knowledge and attitude in terms of pain management among home care nurses (11), oncology nurses (12) and hospice nurses (13). Several small unrepresentative surveys have demonstrated more comprehensive knowledge, attitude and practice concerning palliative care (14 – 19). In Japan, some small surveys have reported knowledge and practice (20) and difficulty (21, 22) associated with palliative care. A region-wide survey reported health professionals’ confidence and difficulties in providing palliative care as a pilot study of the Outreach Palliative Care Trial of Integrated Model (OPTIM) study (2). However, the reliability and validity of the confidence questionnaire has not been formally assessed. Few well-designed surveys have been conducted to understand palliative care-related knowledge, attitude and practice in a representative sample of nurses caring for cancer patients. Palliative care educational programs in foreign countries have shown that knowledge and skills can be improved (23–26). To implement an effective remedial program, we must first understand the existing deficiencies in palliative care. Therefore, this survey aimed to investigate palliative care-related knowledge, difficulty and practice issues in region-wide sample of nurses providing care to cancer patients in hospital and home care settings in Japan.

719

720

Nurses’ palliative care knowledge and practice

Table 1. Participant characteristics Total

Designated cancer center

Community hospital

District nurse services

(N ¼ 2378)

(N ¼ 1345)

(N ¼ 856)

(N ¼ 177)

n

%

n

%

n

%

n

P

%

Gender Male Female

50

2

26

2

21

2

3

2

2292

96

1297

96

823

96

172

97

0.659

Age (years) 751

32

505

38

237

28

9

5

819

34

471

35

288

34

60

34

40– 49

497

21

231

17

195

23

71

40

50– 59

282

12

122

9

125

15

35

20

5

1

1

1

60 or more

9

0.4

3

0.2

,0.001

Education Nursing school

1717

72

803

60

782

91

132

75

Junior college

420

18

319

24

59

7

42

24

University

220

9

206

15

12

1

2

1

12

1

10

1

1

0.1

1

1

Graduate school

,0.001

Clinical experience in a palliative care unit No

2162

91

1226

91

772

90

164

93

Yes

203

9

112

8

80

9

11

6

0.375

Clinical experience of district nurse, years No

2123

89

1321

98

801

94

1

1

Yes

247

10

22

1

49

6

176

99

0

0

,0.001

Number of terminally ill cancer patients that they had ever cared for None 1– 9

22

1

14

1

8

1

330

14

171

13

129

15

30

17

10– 49

1031

43

528

39

403

47

100

56

50– 99

488

21

295

22

161

19

32

18

100 or more

491

21

329

24

148

17

14

8

0

0

0

0

0

0

0

,0.001

Number of cancer patients that they had ever cared for None

0

1– 9

225

9

107

8

99

12

19

11

10– 49

641

27

275

20

288

34

78

44

50– 99

502

21

254

19

200

23

48

27

100 or more

996

42

703

52

261

30

32

18

316

23

325

38

21

12

,0.001

Postgraduate education of palliative care, hours None

662

28

1

207

9

87

6

108

13

12

7

2– 4

556

23

304

23

198

23

54

31

5 or more

935

39

629

47

217

25

89

50

,0.001

Palliative care team in their working institution Absence

888

37

0

0

711

83

177

100

Presence

1490

63

1345

100

145

17

0

0

,0.001

Continued

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,30 30– 39

Jpn J Clin Oncol 2014;44(8)

721

Table 1. Continued Total

Designated cancer center

Community hospital

District nurse services

(N ¼ 2378)

(N ¼ 1345)

(N ¼ 856)

(N ¼ 177)

n

%

n

%

n

%

n

P

%

Region 265

11

0

0

251

29

14

8

Kashiwa

590

25

311

23

234

27

45

25

Hamamatsu

891

37

576

43

243

28

72

41

Nagasaki

632

27

458

34

128

15

46

26

,0.001

Some percentages may not add up to 100% because of missing data.

(3 items), communication (3 items), patient and familycentered care (3 items) and oral health (1 item). Each item assessed the frequency of provision in daily practice using a Likert scale scored from 1 (not at all) to 5 (always). High scores suggested high levels of performance of the recommended practices.

Among these, 3008 nurses met the eligibility criteria, of which 2684 returned the questionnaires (response rate, 89%) and 306 were excluded because of the lack of experience in caring for cancer patients. Therefore, 2378 nurses were analyzed (effective response rate, 79%): 1345 nurses worked in designated cancer centers, 856 in community hospitals and 177 in district nursing stations.

PARTICIPANT CHARACTERISTICS The gender, age and education level of the participants were recorded. In addition, we recorded their clinical experience (palliative care unit and district nurse), terminal care experience (approximate number), postgraduate palliative care education and the presence or absence of a palliative care team in their institution. DATA ANALYSIS For the descriptive data, we calculated the correct answer rates for the palliative care knowledge questionnaire and the positive answer rates in the difficulty and self-reported practice questionnaires (i.e. scores of 4 or 5 on the respective Likert scales). To compare the total and domain scores among institutions, we used the t-test, analysis of variance (ANOVA) and the x 2test. To assess the factors related to the total palliative care knowledge, difficulty and self-reported practice scores, we performed univariate analysis. Finally, we performed multivariate analysis using general linear analysis. To decrease the effect of multicollinearity, variables with a variance inflation factor of ,2 were selected. P values of ,0.05 were considered statistically significant. All tests were two-tailed. Statistical analyses were performed with SAS version 9.3 for Windows (SAS Institute, Cary, NC).

PARTICIPANT CHARACTERISTICS Table 1 summarizes the participants’ characteristics; 96% were female and 32% were ,30 years old. Significant differences existed among institutions in age, education, nursing experience, district nurse experience, experience in the region, experience in caring for terminally ill and cancer patients, postgraduate palliative care education and working region. KNOWLEDGE ABOUT PALLIATIVE CARE Table 2 details the Palliative Care Knowledge Test scores. The average correct answer rate was 88 + 26% for philosophy, 52 + 28% for pain, 42 + 26% for dyspnea, 37 + 29% for psychiatric problems, 52 + 29% for gastrointestinal problems and 51 + 20% in total. Significant differences were observed between the different working institutions across all scores. DIFFICULTY IN PALLIATIVE CARE Table 3 details the Palliative Care Difficulty Scale scores. The average scores were 3.5 + 0.8 for alleviating symptoms, 2.9 + 1.3 for expert support, 3.1 + 1.0 for communication with multidisciplinary teams, 3.2 + 0.9 for communication with the patient and their family, 3.0 + 1.2 for community coordination and 3.2 + 0.7 in total. Significant differences were observed in all scores among the different working institutions.

RESULTS

SELF-REPORTED PRACTICE IN PALLIATIVE CARE

A total of 26 institutions participated: 9 designated cancer centers, 17 community hospitals and 73 district nurse services.

Table 4 details the Palliative Care Self-Reported Practices scale scores. The average scores were 4.0 + 0.8 for pain,

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Tsuruoka

722

Table 2. The palliative care knowledge test scores Designated cancer center

Community hospital

District nurse service

P

88 + 26

91 + 24

84 + 29

90 + 23

,0.001

Palliative care should only be provided for patients who have no curative treatments available. (False)

89%

91%

87%

90%

Palliative care should not be provided along with anti-cancer treatments. (False)

87%

91%

82%

90%

Pain (domain score, mean + SD)

52 + 28

57 + 28

45 + 27

54 + 29

One of the goals of pain management is to get a good night sleep. (True)

75%

77%

71%

80%

When cancer pain is mild, pentazocine should be used more often than an opioid. (False)

56%

60%

52%

56%

When opioids are taken on a regular basis, non-steroidal anti-inflammatory drugs should not be used. (False)

55%

62%

41%

63%

The effect of opioids should decrease when pentazocine or buprenorphine hydrochloride is used together after opioids are used. (True)

42%

49%

35%

26%

Long-term use of opioids can often induce addiction. (False)

47%

50%

42%

56%

Use of opioids does not influence survival time. (True)

38%

42%

31%

42%

Dyspnea (domain score, mean + SD)

42 + 26

45 + 26

37 + 25

45 + 25

Morphine should be used to relieve dyspnea in cancer patients. (True)

61%

66%

55%

57%

When opioids are taken on a regular basis, respiratory depression will be common. (False)

16%

18%

14%

17%

Oxygen saturation levels are correlated with dyspnea. (False)

75%

78%

69%

83%

Anticholinergic drugs or scopolamine hydrobromide are effective for alleviating bronchial secretions of dying patients. (True) Psychiatric problems (domain score, mean + SD)

15%

18%

10%

21%

37 + 29

39 + 29

33 + 27

40 + 30

During the last days of life, drowsiness associated with electrolyte imbalance should decrease patient discomfort. (True)

30%

30%

26%

45%

Benzodiazepines should be effective for controlling delirium. (True)

29%

33%

23%

30%

Some dying patients will require continuous sedation to alleviate suffering. (True)

35%

37%

31%

31%

Morphine is often a cause of delirium in terminally ill cancer patients. (False)

55%

57%

52%

54%

Gastrointestinal problems (domain score, mean + SD)

52 + 29

53 + 29

50 + 29

54 + 28

At terminal stages of cancer, higher calorie intake is needed compared to early stages. (False)

53%

54%

51%

59%

There is no route except central venous for patients unable to maintain a peripheral intravenous route. (False)

60%

60%

60%

64%

Steroids should improve appetite among patients with advanced cancer. (True)

50%

53%

44%

52%

Intravenous infusion will not be effective for alleviating dry mouth in dying patients. (True)

46%

47%

44%

40%

51 + 20

53 + 20

46 + 19

53 + 21

Total score (mean + SD) Data are average correct answer rates. High test scores suggest a high level of knowledge about palliative care. SD, standard deviation.

,0.001

,0.001

,0.001

0.0208

,0.001

Nurses’ palliative care knowledge and practice

Philosophy (domain score, mean + SD)

Total

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Jpn J Clin Oncol 2014;44(8)

723

Table 3. The palliative care difficulty scale scores

Alleviating symptoms (domain score, mean + SD)

Total

Designated cancer center

Community hospital

District nurse service

P

3.5 + 0.8

3.4 + 0.9

3.6 + 0.8

3.5 + 0.8

,0.001

There is a lack of knowledge about alleviating cancer pain

49%

47%

51%

49%

There is a lack of knowledge about alleviating dyspnea and digestive symptoms

49%

48%

50%

45%

Necessary training is not received about palliative care Expert support (domain score, mean + SD)

55%

49%

64%

54%

2.9 + 1.3

2.4 + 1.2

3.6 + 1.1

3.3 + 1.1

39%

24%

60%

55%

There is no expert whom I can consult with about alleviating symptoms

38%

21%

59%

51%

There are no facilities that can be consulted for alleviating the symptoms of home care patients

37%

23%

52%

43%

Communication in multidisciplinary teams (domain score, mean + SD)

3.1 + 1.0

2.9 + 1.0

3.3 + 1.0

3.3 + 1.0

The method of evaluating symptoms is not consistent in multi professional teams

38%

32%

44%

45%

It is difficult to have a common goal toward alleviating symptoms in multi professional teams.

37%

32%

44%

41%

It is difficult to communicate about alleviating symptoms in multiprofessional teams

33%

26%

39%

47%

Communication with patient and family (domain score, mean + SD)

3.2 + 0.9

3.2 + 0.9

3.4 + 0.9

3.2 + 0.9

When a patient expresses anxiety, it is difficult to respond

36%

33%

40%

36%

When a family expresses anxiety, it is difficult to respond

36%

32%

41%

33%

After a patient is informed of bad news, it is difficult to talk

50%

46%

54%

49%

Community coordination (domain score, mean + SD)

3.0 + 1.2

2.9 + 1.2

3.2 + 1.1

2.9 + 1.0

There is no meeting between facilities when the cancer patient moves from hospital to home care.

36%

33%

41%

29%

It is difficult to get information about home care for cancer patients.

41%

37%

47%

29%

It is difficult to share information between hospital and facilities that provide home care.

39%

37%

41%

33%

3.2 + 0.7

3.0 + 0.7

3.4 + 0.7

3.3 + 0.7

Total score (mean + SD)

,0.001

,0.001

,0.001

,0.001

Data represent the percentage of respondents who answered about the frequency of problems in daily practice, with scores of 4 or 5 on the Likert scale. High values suggest high perceived difficulty.

3.7 + 0.8 for dyspnea, 3.1 + 0.9 for delirium, 3.5 + 0.9 for terminal care, 3.7 + 0.8 for communication, 3.9 + 0.8 for patient-centered and family-centered care, 3.9 + 0.9 for oral care and 3.7 + 0.6 in total. Significant differences were observed in all scores, except for the oral care and total scores, among the different working institutions.

FACTORS ASSOCIATED WITH KNOWLEDGE, DIFFICULTY AND SELF-REPORTED PRACTICE Tables 5 and 6 summarize the factors associated with knowledge, difficulty and self-reported practice in the provision of palliative care for cancer patients. Knowledge about palliative care was significantly poorer in community hospitals than in designated cancer centers (P ¼ 0.035) after adjusting for characteristics. Palliative care difficulty was significantly higher in community hospitals (P , 0.001) and district nurse services (P ¼ 0.013) than in designated cancer centers. Self-reported palliative care practice was significantly poorer in community

hospitals (P , 0.001) and better in district nurse services (P , 0.001) than in designated cancer centers. Multivariate analysis revealed that palliative care-related knowledge, difficulty and self-reported practice were significantly better when the nurses had worked in a palliative care unit and had received postgraduate palliative care education. Similarly, older age gave significantly better results for difficulty and self-reported practice, while more experience in caring for terminally ill and cancer patients was better for knowledge and difficulty.

DISCUSSION This study has systematically described palliative care-related knowledge, difficulty and self-reported practice using wellvalidated scales among a representative region-wide sample of nurses providing care to cancer patients in various institutions. We identified that knowledge, difficulty and selfreported practice in symptom management, particularly

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It is difficult to get support from experts about alleviating symptoms

,0.001

724

Nurses’ palliative care knowledge and practice

Table 4. The palliative care self-reported practices scale scores

Pain (domain score, mean + SD) To evaluate pain, I ask the patient directly regarding pain intensity or use the pain intensity scale when the patient cannot reply.

Total

Designated cancer center

Community hospital

District nurse service

P

4.0 + 0.8

4.1 + 0.7

3.8 + 0.8

4.0 + 0.7

,0.001

73%

77%

69%

58%

I understand the situation of the patient experiencing pain.

75%

80%

65%

84%

I evaluate the effectiveness of rescue doses.

85%

88%

80%

85%

Dyspnea (domain score, mean + SD)

3.8 + 0.8

3.5 + 0.8

3.8 + 0.7

55%

59%

49%

49%

I understand the situation of the patient experiencing dyspnea.

70%

74%

60%

81%

I help the patient become comfortable to alleviate dyspnea.

75%

77%

70%

82%

3.1 + 0.9

3.3 + 0.9

2.9 + 0.9

3.2 + 0.8

I help patient’s orientation with clock and calendar to prevent and improve delirium.

35%

43%

23%

26%

I evaluate discomfort from deteriorating delirium (e.g. urination, defecation, pain and anxiety).

46%

54%

33%

45%

Delirium (domain score, mean + SD)

I inquire about the family’s concerns about delirium. Dying-phase care (domain score, mean + SD)

37%

41%

26%

60%

3.5 + 0.9

3.6 + 0.9

3.3 + 0.9

3.9 + 0.9

I evaluate physical discomfort regularly in the dying phase.

56%

60%

47%

69%

I evaluate the appropriateness of care given in the dying phase (e.g. positioning, suctioning, physical restriction, blood tests, measurement of urine, infusions).

60%

63%

50%

75%

I routinely inquire about the family’s concerns in the dying phase.

55%

59%

43%

79%

Communication (domain score, mean + SD)

3.7 + 0.8

3.8 + 0.7

3.5 + 0.8

4.0 + 0.7

I talk with the patient and family in a quiet and private place.

61%

63%

52%

78%

I use open-ended questions for the patient and family.

68%

71%

59%

80%

I confirm understanding of conditions by eliciting questions from the patient and family.

57%

61%

46%

72%

3.9 + 0.8

4.0 + 0.7

3.7 + 0.8

4.3 + 0.7

I try to find out what is important to the patient and family.

68%

72%

57%

82%

I try to understand the wishes of the patient and family.

73%

76%

63%

86%

Patient- and family-centered care (domain score, mean + SD)

I try to understand the suffering of the patient and family. Oral care (domain score, mean + SD) I regularly observe state of the oral cavity and clean it. Total score (mean + SD)

76%

80%

67%

86%

3.9 + 0.9

3.9 + 0.9

3.9 + 0.9

3.9 + 0.8

74%

73%

74%

73%

3.7 + 0.6

3.8 + 0.6

3.5 + 0.6

3.8 + 0.6

,0.001

,0.001

,0.001

,0.001

,0.001

0.751

,0.001

Data of each item is the percentage of the respondents who answered ‘4 Generally’ and ‘5 Always’ for the frequency of provision in daily practice. High values suggest a high level of performance of recommended practices.

psychological symptoms, were insufficient, particularly when nurses working in community hospitals had less experience in caring for terminally ill cancer patients and less postgraduate palliative care education. In the palliative care knowledge assessment, the philosophy subdomain scored high, while the symptom management domain ( particularly for psychiatric problems) scored relatively poorly. Because the symptoms evaluated in this scale were common in end-of-life cancer patients (31), we conclude that symptom management knowledge was insufficient, particularly for psychological symptoms. This insufficiency was particularly marked in community hospitals when nurses had less experience in caring for terminally ill cancer

patients and had received less postgraduate palliative care education. All designated cancer centers in Japan are required to have a palliative care team, and most have in-house palliative care courses. Conversely, community hospitals that are not certified cancer centers are less likely to have a palliative care team. Nurses in community hospitals consequently have insufficient experience and less specialist support. The End-of-Life Nursing Education Consortium (ELNEC) is an effective training program for the acquisition of the palliative care knowledge necessary to provide optimal terminal care (25, 26, 32). Employing the Japanese version (ELNEC-J) (33) may improve palliative care knowledge among nurses.

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3.7 + 0.8

To evaluate dyspnea, I ask the patient directly about dyspnea intensity or use the dyspnea scale when the patient cannot reply.

Jpn J Clin Oncol 2014;44(8)

725

Table 5. Univariate analysis of the factors associated with palliative care-related knowledge, difficulty, and self-reported practice Knowledge

Difficulty

Self-reported practice

Mean + SD

P

Mean + SD

P

Mean + SD

P

53 + 20

,0.001

3.0 + 0.7

,0.001

3.8 + 0.6

,0.001

Type of working institution Designated cancer center Community hospital

46 + 19

3.4 + 0.7

3.5 + 0.6

District nurse service

53 + 21

3.3 + 0.7

3.8 + 0.6

Gender 50 + 21

Female

51 + 20

0.908

3.2 + 0.7

0.372

3.2 + 0.8

3.7 + 0.7

0.491

3.7 + 0.6

Age, years ,30

48 + 18

30–39

53 + 21

0.015

3.2 + 0.7

,0.001

3.1 + 0.8

3.7 + 0.6

,0.001

3.8 + 0.6

40–49

52 + 21

3.1 + 0.7

3.7 + 0.7

50 or more

50 + 19

3.1 + 0.8

3.5 + 0.7

Education Nursing school

49 + 20

,0.001

3.2 + 0.8

,0.001

3.6 + 0.6

Junior college

55 + 19

3.0 + 0.7

3.8 + 0.6

University/Graduate school

54 + 20

3.1 + 0.8

3.8 + 0.6

,0.001

Clinical experience in a palliative care unit No

49 + 19

Yes

65 + 22

,0.001

3.2 + 0.7

,0.001

3.0 + 0.8

3.6 + 0.6

,0.001

3.9 + 0.7

Number of terminally ill cancer patients that they had ever cared for 0– 9

37 + 17

10–49

48 + 18

,0.001

3.3 + 0.7

,0.001

3.2 + 0.7

3.4 + 0.7

,0.001

3.6 + 0.6

50–99

54 + 18

3.1 + 0.8

3.7 + 0.6

100 or more

62 + 22

2.9 + 0.8

3.9 + 0.6

Number of cancer patients that they had ever cared for 0– 9

36 + 18

,0.001

3.3 + 0.7

,0.001

3.4 + 0.7

10–49

46 + 18

3.2 + 0.7

3.7 + 0.6

50–99

49 + 18

3.0 + 0.8

3.8 + 0.6

100 or more

58 + 20

3.0 + 0.8

3.8 + 0.6

,0.001

Postgraduate education of palliative care, hours None

40 + 17

1

41 + 17

,0.001

3.4 + 0.7

,0.001

3.3 + 0.7

3.5 + 0.7

,0.001

3.5 + 0.6

2– 4

48 + 17

3.2 + 0.7

3.6 + 0.6

5 or more

62 + 19

3.0 + 0.8

3.9 + 0.6

Region Tsuruoka

45 + 20

,0.001

3.3 + 0.7

,0.001

3.4 + 0.6

Kashiwa

50 + 22

3.4 + 0.7

3.8 + 0.6

Hamamatsu

51 + 19

3.1 + 0.7

3.7 + 0.6

Nagasaki

53 + 20

3.0 + 0.7

3.7 + 0.6

Difficulties in alleviating symptoms were identified to be relatively high, while those in providing perceived expert support were low. As observed for knowledge assessment,

,0.001

difficulties in providing palliative care were worse in community hospitals when nurses had less experience in caring for terminally ill cancer patients and had received less

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Male

726

Nurses’ palliative care knowledge and practice

Table 6. Multivariate analysis of the factors associated with palliative care-related knowledge, difficulty and self-reported practice Knowledge PRC

Difficulty P

PRC

Self-reported practice P

PRC

P

Type of working institution Designated cancer center

Reference

Reference

Reference

Community hospital

21.44

0.035

0.15

,0.001

20.16

,0.001

District nurse service

1.11

0.244

0.10

0.013

0.16

,0.001

Gender Male

Reference

Reference

Reference

0.10

0.936

20.03

0.505

20.02

0.569

0.32

0.411

0.06

,0.001

20.06

,0.001

Education Nursing school

Reference

Reference

Reference

Junior college

0.85

0.240

20.03

0.371

0.01

0.732

University/Graduate school

1.26

0.146

0.02

0.518

0.02

0.426

Clinical experience in a palliative care unit No

Reference

Yes

Reference

Reference

7.79

,0.0001

20.11

0.034

0.12

0.007

Number of terminally ill cancer patients that they had ever cared for

3.74

,0.0001

20.07

0.001

0.11

,0.001

Number of cancer patients that they had ever cared for

1.62

0.002

20.05

0.024

0.02

0.243

Postgraduate education of palliative care, hours

5.56

,0.0001

20.09

,0.001

0.10

,0.001

Region Tsuruoka

Reference

Reference

Reference

Kashiwa

2.60

,0.001

0.14

,0.001

0.16

,0.001

Hamamatsu

0.19

0.760

20.04

0.100

0.02

0.437

20.59

0.388

20.05

0.079

20.07

0.005

Nagasaki PRC, partial regression coefficient.

postgraduate palliative care education. Difficulties in providing expert support were particularly low in the designated cancer centers. The differences between designated cancer centers and district nurse services are most likely related to the availability of specialist palliative care teams and expert support. In the self-reported palliative care practice assessment, pain management, patient and family-centered care and oral care scored relatively high, while care for delirium scored low. We showed similar differences and relating factors among palliative care knowledge, difficulties and self-reported practice. Here we summarized challenges and features in palliative nursing care from the entire results. First, the most important palliative care challenge for nurses was the management of psychological symptoms; many nurses lack knowledge, perceive difficulty in care and are poorly practiced. Difficulty in achieving symptom palliation and the lack of a support system for psychological symptoms (e.g. there was often no psychiatrist) were major barriers to the provision of effective palliative care (8). Second, many nurses have insufficient

knowledge and experience difficulties while providing pain management, although most nurses reported the assessment of pain and delivery of rescue doses with care. This may reflect the passive working style of nurses in Japan, where they typically follow the instructions of the doctor. Nurses perceived difficulties in this area because they lacked the basic knowledge and evidence. Third, high patient-centered and familycentered care was provided by most nurses; this may represent a strength of Japanese nurses. Fourth, terminal care was reported to be particularly highly in the district nurse services. This domain included reassessment of the appropriateness of medical treatment and addressing the family’s concerns, often in home settings. Finally, when nurses had less experience in caring for terminally ill cancer patients and less postgraduate palliative care education, their practice was best in district nurse services, followed by designated cancer centers and community hospitals. As well as educational intervention, expert support and adequate clinical experiences would help nurses to provide quality palliative care.

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Female Age (years)

Jpn J Clin Oncol 2014;44(8)

CONCLUSION The strengths of this study were that it represented a regionwide cohort of nurses and that it systematically evaluated palliative care-related knowledge, difficulty and self-reported practice using validated scales. We found that knowledge, difficulty and self-reported practice concerning symptom management, particularly psychological symptoms, were insufficient, particularly among nurses working in community hospitals who had less experience in caring for terminally ill cancer patients and had received less postgraduate palliative care education. Educational intervention, expert support and adequate clinical experiences would help nurses to provide quality palliative care. Further comparison with the OPTIM study’s post-intervention questionnaire results should further clarify our understanding of the issues raised.

Funding This study was funded by the Third Term Comprehensive Control Research for Cancer Health and Labor Sciences Research Grants in Japan.

Conflict of interest statement None declared.

References 1. Miyashita M, Morita T, Sato K, Tsuneto S, Shima Y. J-HOPE study: Evaluation of End-of-Life Cancer Care in Japan from the Perspective of Bereaved Family Members. ASCO Annual Meeting; 29 May – 2 June 2009; Orlando, FL. 2. Hirooka K, Miyashita M, Morita T, et al. Regional medical professionals’ confidence in providing palliative care, associated difficulties and availability of specialized palliative care services in Japan. Jpn J Clin Oncol 2014;44:249– 6. 3. Teno JM, Clarridge BR, Casey V, et al. Family perspectives on end-of-life care at the last place of care. JAMA 2004;291:88– 93. 4. Addington-Hall J, McCarthy M. Dying from cancer: results of a national population-based investigation. Palliat Med 1995;9:295– 305. 5. Costantini M, Ripamonti C, Beccaro M, et al. Prevalence, distress, management, and relief of pain during the last 3 months of cancer patients’ life. Results of an Italian mortality follow-back survey. Ann Oncol 2009;20:729– 35. 6. Beccaro M, Caraceni A, Costantini M. End-of-life care in Italian hospitals: quality of and satisfaction with care from the caregivers’ point of view—results from the Italian Survey of the Dying of Cancer. J Pain Symptom Manage 2010;39:1003 –15. 7. Oldenmenger WH, Sillevis Smitt PA, van Dooren S, Stoter G, van der Rijt CC. A systematic review on barriers hindering adequate cancer pain management and interventions to reduce them: a critical appraisal. Eur J Cancer 2009;45:1370 –80. 8. Miyashita M, Sanjo M, Morita T, et al. Barriers to providing palliative care and priorities for future actions to advance palliative care in Japan: a nationwide expert opinion survey. J Palliat Med 2007;10: 390 – 9. 9. Ahmed N, Bestall JC, Ahmedzai SH, Payne SA, Clark D, Noble B. Systematic review of the problems and issues of accessing specialist palliative care by patients, carers and health and social care professionals. Palliat Med 2004;18:525– 42. 10. Abu-Saad Huijer H, Abboud S, Dimassi H. Palliative care in Lebanon: knowledge, attitudes and practices. Int J Palliat Nurs 2009;15:346– 53. 11. Glajchen M, Bookbinder M. Knowledge and perceived competence of home care nurses in pain management: a national survey. J Pain Symptom Manage 2001;21:307–16. 12. Bernardi M, Catania G, Lambert A, Tridello G, Luzzani M. Knowledge and attitudes about cancer pain management: a national survey of Italian oncology nurses. Eur J Oncol Nurs 2007;11:272– 9. 13. Bernardi M, Catania G, Tridello G. Knowledge and attitudes about cancer pain management: a national survey of Italian hospice nurses. Cancer Nurs 2007;30:E20– 6. 14. McCaffery M, Ferrell BR. Nurses’ knowledge about cancer pain: a survey of five countries. J Pain Symptom Manage 1995;10:356–69. 15. Proctor M, Grealish L, Coates M, Sears P. Nurses’ knowledge of palliative care in the Australian Capital Territory. Int J Palliat Nurs 2000;6:421– 8. 16. Cohen L, O’Connor M, Blackmore AM. Nurses’ attitudes to palliative care in nursing homes in Western Australia. Int J Palliat Nurs 2002;8:88–98. 17. Knapp CA, Madden V, Wang H, et al. Paediatric nurses’ knowledge of palliative care in Florida: a quantitative study. Int J Palliat Nurs 2009;15:432– 9. 18. Brazil K, Brink P, Kaasalainen S, Kelly ML, McAiney C. Knowledge and perceived competence among nurses caring for the dying in long-term care homes. Int J Palliat Nurs 2012;18:77– 83. 19. Choi M, Lee J, Kim SS, Kim D, Kim H. Nurses’ knowledge about end-of-life care: where are we? J Contin Educ Nurs 2012; 43:379 – 84. 20. Morita T, Fujimoto K, Imura C, Nanba M, Fukumoto N, Itoh T. Self-reported practice, confidence, and knowledge about palliative care of nurses in a Japanese Regional Cancer Center: longitudinal study after 1-year activity of palliative care team. Am J Hosp Palliat Care 2006;23:385–91. 21. Sasahara T, Miyashita M, Kawa M, Kazuma K. Difficulties encountered by nurses in the care of terminally ill cancer patients in general hospitals in Japan. Palliat Med 2003;17:520– 6. 22. Sasahara T, Miyashita M, Kawa M, et al. Factors associated with difficulties encountered by nurses in the care of terminally ill cancer patients in hospitals in Japan. Palliat Support Care 2005;3:15– 22.

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The data presented in this report is part of the OPTIM study, a mixed-methods study of a regional palliative care intervention for patients with cancer (27). We reported here the pre-intervention outcomes to assess the ‘current status’ of palliative nursing care not under the influence of special intervention. In addition, we indicated the factors associated with knowledge, difficulty and self-reported practice to develop intervention strategy. Intervention of the OPTIM study included education, specialist support and networking. Significant improvements in nurse-reported palliative care knowledge and difficulty after regional interventions have been reported briefly in another study (28). Detailed report of changes of palliative care-related knowledge, difficulty and practice issues in region-wide sample of nurses providing care to cancer patients is in preparation. This study had several limitations. First, we did not collect information about actual practice: self-reported practice may not reflect the adequacy of nurses’ care for patients. Second, despite selecting regions on the basis of their different palliative care systems, we lacked regional representativeness. Third, we could not collect data from all of the small local hospitals. Fourth, unmeasured factors such as type of education or training may be associated with palliative care-related knowledge, difficulty and self-reported practice. Finally, because our study focused on cancer patients, we cannot draw conclusions about palliative care for non-cancer patients.

727

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self-reported practices and difficulties experienced in palliative care by health professionals. J Palliat Med 2010;13:427–37. 31. Seow H, Barbera L, Sutradhar R, et al. Trajectory of performance status and symptom scores for patients with cancer during the last six months of life. J Clin Oncol 2011;29:1151– 8. 32. Ferrell BR, Virani R, Malloy P. Evaluation of the end-of-life nursing education consortium project in the USA. Int J Palliat Nurs 2006;12: 269– 76. 33. Takenouchi S, Miyashita M, Tamura K, Kizawa Y, Kosugi S. Evaluation of the end-of-life nursing education Consortium? Japan faculty development program: validity and reliability of the “end-of-life nursing education questionnaire”. J Hospice Palliat Nurs 2011;13: 368 – 75.

Appendix The following authors have contributed equally to the current study, in addition to the authors listed in the author field. Yoshiyuki Kizawa: Palliative Medicine, Kobe University Graduate School of Medicine, Kobe, Hyogo, Japan. Mitsunori Miyashita: Department of Palliative Nursing, Health Sciences, Tohoku University Graduate School of Medicine, Sendai, Miyagi.

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23. VanGeest JB. Process evaluation of an educational intervention to improve end-of-life care: the Education for Physicians on End-of-Life Care (EPEC) program. Am J Hosp Palliat Care 2001;18:233–8. 24. Robinson K, Sutton S, von Gunten CF, et al. Assessment of the education for physicians on End-of-Life Care (EPEC) project. J Palliat Med 2004;7:637– 45. 25. Ferrell BR, Virani R, Grant M, et al. Evaluation of the End-of-Life Nursing Education Consortium undergraduate faculty training program. J Palliat Med 2005;8:107– 14. 26. Ferrell BR, Dahlin C, Campbell ML, Paice JA, Malloy P, Virani R. End-of-life Nursing Education Consortium (ELNEC) Training Program: improving palliative care in critical care. Crit Care Nurs Q 2007;30:206–12. 27. Yamagishi A, Morita T, Miyashita M, et al. Palliative care in Japan: current status and a nationwide challenge to improve palliative care by the Cancer Control Act and the Outreach Palliative Care Trial of Integrated Regional Model (OPTIM) study. Am J Hosp Palliat Care 2008;25:412–8. 28. Morita T, Miyashita M, Yamagishi A, et al. Effects of a programme of interventions on regional comprehensive palliative care for patients with cancer: a mixed-methods study. Lancet Oncol 2013;14:638–46. 29. Nakazawa Y, Miyashita M, Morita T, Umeda M, Oyagi Y, Ogasawara T. The palliative care knowledge test: reliability and validity of an instrument to measure palliative care knowledge among health professionals. Palliat Med 2009;23:754– 66. 30. Nakazawa Y, Miyashita M, Morita T, Umeda M, Oyagi Y, Ogasawara T. The palliative care self-reported practices scale and the palliative care difficulties scale: reliability and validity of two scales evaluating

A Japanese region-wide survey of the knowledge, difficulties and self-reported palliative care practices among nurses.

We investigated palliative care knowledge, difficulty and self-reported practice among a region-wide sample of nurses who cared for cancer patients in...
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