Support Care Cancer (2013) 21:53–58 DOI 10.1007/s00520-012-1491-y

ORIGINAL ARTICLE

Effectiveness of using clinical guidelines for conducting palliative care family meetings in Japan Mieko Fukui & Satoru Iwase & Naoko Sakata & Yujiro Kuroda & Kazuhiro Yoshiuchi & Keiichi Nakagawa & Karen Quinn & Peter L. Hudson

Received: 11 July 2011 / Accepted: 30 April 2012 / Published online: 25 May 2012 # Springer-Verlag 2012

Abstract Purpose The purpose of this study is to pilot test the effectiveness of using recently developed clinical guidelines from Australia for conducting palliative care family meetings in Japan. Methods Palliative care family meetings were conducted using clinical guidelines with 15 primary family carers of cancer patients who were admitted to an acute care hospital in Japan. Using the pre-family meeting questionnaire, the primary carers were asked to write key concerns to discuss during the family meetings and rate their concerns via a numerical rating scale: how upset/worried they were about the problem, frequency in which problem occurs, life interference with the problem, and the confidence to deal with the problem. Within 3 days after the meeting, the primary

carers were asked to complete the post-meeting questionnaire to evaluate the effectiveness of the family meeting. Results There was a significant improvement in family carers’ psychological well-being in the post-meeting questionnaires compared to the pre-meeting questionnaires as follows: how upset/worried they were about the problem, t (14)03.1071, p<0.000011; frequency in which problem occurs, t(14)03.2857, p<0.000013; life interference with the problem, t(14)02.7857, p<0.000008; and the confidence to deal with the problem, t(13)0−2.3007, p<0.005480. Conclusions In accordance with the study aims, we were able to demonstrate the utility of a questionnaire as an essential tool to plan and conduct effective communication between health professionals and primary family carers in Japanese cancer patients. This pilot test should be followed up with a larger sample and a controlled trial.

Electronic supplementary material The online version of this article (doi:10.1007/s00520-012-1491-y) contains supplementary material, which is available to authorized users.

Keywords Palliative care . Primary family carers . Cancer patients

M. Fukui (*) : S. Iwase : N. Sakata : Y. Kuroda : K. Nakagawa Department of Palliative Medicine, The University of Tokyo Hospital, Tokyo, Japan e-mail: [email protected]

Introduction

K. Yoshiuchi Department of Psychosomatic Medicine, The University of Tokyo Hospital, Tokyo, Japan K. Quinn : P. L. Hudson Centre for Palliative Care, c/o St. Vincent’s & University of Melbourne, Melbourne, VIC, Australia P. L. Hudson Queen’s University Belfast, Belfast, UK

The aim of palliative care is to assist patients with terminal conditions to achieve their best possible quality of life as defined by the World Health Organization [1]. In order to accomplish this goal, it is necessary to understand each patient’s unique needs and support their carer’s psychosocial burden as much as possible. Even though numerous studies have empirically shown that carers experience high levels of emotional distress and anxiety in the process of supporting their dying relatives, few clinical studies exist for formal evaluation and intervention [2–4]. Recently, an official clinical guideline to conduct effective family meetings in palliative care was developed in Australia

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[5]. The guideline highlights the importance of discussing the primary carer’s main concerns during family meetings and developed pre-meeting and post-meeting questionnaires as an essential tool to convey effective communication between health professionals and family members. Prior to each family meeting, the pre-meeting questionnaire was used to identify the main priorities for discussion during the meeting. Subsequently, the post-meeting questionnaire was used to evaluate the family’s satisfaction with regard to the outcomes of the meeting. A follow-up study by the same research group who developed the clinical guidelines tested the effectiveness of conducing family meetings using the guidelines in a pilot study involving a cohort of English-speaking families [6]. Although the results were favorable, further empirical inquiry was recommended. Furthermore the utility of the guidelines has not been evaluated in non-English-speaking families. As the longevity of the elderly population extends in Japan exponentially, there are growing needs to provide effective communication strategies for families who care for patients with chronic and end-stage diseases, such as terminal cancer [7]. Therefore, evaluating the applicability of the clinical guidelines within an acute care hospital in Japan was required. The aim of this study was to evaluate (1) the utility of pre-and postfamily meeting questionnaires in Japanese language, (2) the primary concerns of Japanese family carers who care for terminal cancer patients in an acute care hospital, and (3) the main issues discussed in family meetings in order to explore opportunities to improve family care in Japan.

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family carers were recruited through inpatient consultation to the palliative care team at the University of Tokyo hospital over a 1-year period. Japanese family carers were recruited according to the following criteria: (1) the patient was admitted to the University of Tokyo Hospital for cancer treatment, (2) the patient had a diagnosis of advanced cancer who was not immediately dying within a few days, and (3) the patient had a primary carer who was over 18 years of age and who did not have a known diagnosis of psychiatric problems. Explanation of the nature of the research was provided to the primary family carer prior to each family meeting by either the palliative care physician or psychologist. Written information was provided as needed. Informed consent was not obtained since family meetings are considered as part of routine patient care in Japan. Ethical approval was obtained from the University of Tokyo Hospital. Intervention

The study was conducted at the University of Tokyo Hospital which is one of the largest acute care hospitals in Japan with a total of 1,210 beds as of 2010. Palliative care is provided by a consultative service for cancer patients and their families who are undergoing inpatient cancer treatments upon request from patients and their attending physicians (oncologists). The University of Tokyo palliative care consultative service is a team comprising two physicians, a palliative care nurse, and a clinical psychologist. A psychiatrist, an anesthesiologist, and a rehabilitation doctor who are specialized in treating cancer patients are also available as needed. The palliative care physicians have at least 10 years in clinical experience.

The family meetings were conducted using the aforementioned clinical guidelines [5]. In the original guidelines, family meeting facilitators called FMFs whose background was nursing received various training which included communication skills, meeting facilitation, and ground rules for conducting a meeting in order to become facilitators during family meetings. In Japan however, family meetings for terminal cancer patients admitted to acute care hospitals are usually conducted by attending physicians as part of discharge planning. If the palliative care team is already involved in the care of the patients and the discharge planning involves palliative care issues such as symptomatic control or hospice admission, attending physicians request palliative care team physicians to participate in their selected meetings. Social workers were invited to attend if they have been already involved in the care of patients and their families and a psychologist was routinely involved. A psychologist was a research assistant who was a member of palliative care team. In some cases, she was already involved in the care of patients and their families and therefore had easy access to family meetings. Participation of the psychologist was not a necessary part of research protocol. In order to follow the recommended procedures described in the original clinical guidelines, research participants in the University of Tokyo palliative care team watched a training DVD developed by the Australian team who developed the initial guidelines which exemplified the effective communication skills for conducting family meetings [8].

Sample and recruitment

Data collection

A palliative care physician and a clinical psychologist (research assistant) who belong to the palliative care team recruited family participants and collected data. Patients and

Pre-meeting and post-meeting questionnaires utilized in the original guidelines were translated into Japanese. Back translation and forward translation were conducted by native

Methods Setting

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speakers not involved in the research process to validate the translation [9]. Prior to family meetings, a psychologist from the palliative care team had a face-to-face encounter with the primary family carer of the patient and identified at least two key concerns to be addressed during the meeting using the pre-meeting questionnaire (length of contact time was on average 10 to 15 min). The primary carer was asked to rate the key concerns in four different categories on a 10-point scale where “1” represented “not at all” and “10” represented “all the time.” The four categories include ratings of how upset/worried they were about the problem, frequency in which the problem occurs, life interference with the problem, and the confidence to deal with the problem. In addition to the four items described above, verbatim comments from primary carers were encouraged such as “Are there other difficulties you are coping now? Please outline below” and “What questions would you like to ask during the family meeting?” (Supplemental Table 1). After discussing the key issues addressed in the pre-meeting questionnaire, the family meeting proceeded as usual. Within 3 days after the meeting, the primary carer was asked face to face by the palliative care team psychologist to complete the post-meeting questionnaire to evaluate the effectiveness of the family meeting in terms of addressing their key concerns. In addition, attending family meeting health professionals were asked to evaluate the effectiveness of the meeting.

families. Appointments for family meetings were scheduled by the attending physician or by the registrar over the phone for mutual convenience. Including the primary carer as the key person, an average of two family members attended each family meeting, minimum one to maximum of four family members. On average, one physician from the admitting team (an attending physician and or a senior registrar) and a medical consultant from the palliative care team attended the meeting. Other health care professionals including primary and palliative care nurses and a clinical psychologist attended most of the meetings. Social workers attended some of the meetings. Demographic information is shown in Table 1; 13 primary carers were female spouses. Average age of patient was 65 years old (range 34 to 81 years), of which 11 was male. Their ECOG score average was approximately 3.

Data analysis

Table 1 Frequency and percentages of participants’ demographic information (n015)

To examine the change in the primary carer’s satisfaction after each family meeting, the degree of agreement in preand post-meeting questionnaires was compared for the following categories: how upset/worried they were about the problem, frequency in which problem occurs, life interference with the problem, and the confidence to deal with the problem. When the primary carer could not estimate key concerns in numerical rating scale in pre- and post-meeting questionnaires, unanswered questions were excluded from the data analysis. SPSS16.0 Japanese software was used to calculate Student’s paired t test. p value was calculated with two-tailed test, and the p value necessary for statistical significance was defined as 0.05. Topics discussed during the meeting were analyzed and coded for main themes.

Results Sample During the 1-year period, there were over 400 cases of palliative care consultations, and of these, 15 family meetings were conducted as a part of pilot clinical research in Japanese

Effectiveness of the family meetings Family members Of the 15 family meetings that were conducted under research settings, 13 primary carers completed both the preand post-family meeting questionnaires (effective response rate, 86 %). As shown in Table 2, the main agenda items identified were unique to each family and informed the discussion for the family meeting. By discussing the content raised in the pre-meeting questionnaire briefly among health

n Family carer characteristics Gender Male Female Patient characteristics Spouse Parent Other relative Other nonrelative Gender of patient Male Female Level of dependency ECOG score of 1—a little dependent ECOG score of 2—moderately dependent ECOG score of 3—very dependent ECOG score of 4—completely disabled Age of patient (years) Average Range

2 13 12 2 1

11 4 1 6 5 3 65 34~81

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Table 2 Session record for content of the meetings—key themes (n015) Content of topics discussed during meeting (key topics)

n

Discharge planning Symptom management/treatment/medication Update on patient medical condition Concern for patient comfort/quality of life/activities Supports offered for care at home (home visit other) Cancer-related concerns and feelings Financial issue Issue of telling prognosis

15 15 14 13 9 9 2 2

Hospice/palliative care wards options Review planned/team follow-up planned Referral Psychosocial support

2 1 1

professionals prior to the family meeting, assignment was given as to who will answer each question. For example, the patient’s current medical condition was explained by the attending physician, where symptom management, discharge planning, and primary carer’s expression of anxiety were addressed by the palliative care specialist doctor. The most frequent key themes discussed were symptom management and discharge planning, followed by an update on medical condition. Thirteen families discussed concern for patient comfort/quality of life/activities, while 9 cases involved primary carer’s cancer-related fears and concerns. Of those who expressed cancer-related feelings and concerns, the nature of their anxiety stemmed from worrying about how to care for the patient after discharge from hospital or the long-term financial burden for families. Some carers asked their attending physicians not to tell the prognosis to the patients out of concerns for the patients’ emotional wellbeing. However, most families showed their interest in knowing the true prognosis so that they can make an informed decision for the patient. As shown in Table 3, there was a significant improvement of psychological distress expressed by families in post-meeting

questionnaires compared to pre-meeting questionnaires as follows: how upset/worried about the problem, t(14)03.1071, p< 0.000011; frequency in which problem occurs, t(14)03.2857, p<0.000013; life interference with the problem, t(14) 0 2.7857, p<0.000008; and the confidence to deal with the problem, t(13)0−2.3007, p<0.005480. All the Japanese primary carers expressed gratitude toward the health care professionals that their main concerns were well addressed during the meeting, and that they were less worried about the problem and had more confidence to deal with their current situation. All 15 family members identified the positive aspects of the meeting. The main positive comments were that carers found the meetings to be informative and as a result of attending the meeting they were less anxious and felt reassured. However, two primary carers identified unresolved issues after the meeting as “it is impossible to wipe out all the concerns regarding patient’s health” and “(I am) still worried about the financial burden of long-term palliative care.” Health professionals Health professionals who attended the meeting were asked to evaluate the effectiveness of the meeting. Positive feedback was obtained from seven health care professionals who responded to the survey. Attending physicians appreciated being well informed about the primary carer’s concerns prior to the meeting. One of the primary care nurses commented that it was good to clarify the purpose of the meeting and the meeting lessened the psychosocial distress for the primary carer. One of the social workers thought that it was particularly informative for them to discuss the carer’s main concerns among health professionals prior to each family meeting (based on the pre-meeting questionnaire).

Discussion In Japan, when it comes to cancer diagnosis and treatment, family members play an important role in conveying truth to the patient [10, 11]. It is culturally accepted that the family

Table 3 Means and standard deviations for pre-meeting questionnaires and post-meeting questionnaires Significance Mean

Pair Pair Pair Pair

1 2 3 4

(n014) (n014) (n014) (n013)

How worried How often Interferes with life Confidence to deal with

3.1071 3.2857 2.7857 −2.3077

SD

1.6891 1.8157 1.4769 2.4625

Standard error of the mean

0.4515 0.4853 0.3947 0.683

95 % confidence interval Lower

Upper

2.1319 2.2374 1.933 −3.7958

4.0824 4.3341 3.6385 −0.8196

t value

Degree of freedom

p value (two tailed)

6.883 6.771 7.057 −3.379

13 13 13 12

0.000011 0.000013 0.000008 0.005480

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receives the information first from their attending oncologists, whereas patients receive information gradually and often partially based on family’s preferences [10]. Previous studies reported that Japanese families who care for terminal cancer patients reported that the Japanese physicians need considerable improvement in communication skills to pace explanation with the state of the family’s emotional preparedness and comfort [10, 12]. Therefore, alleviating the family’s emotional distress is one of the most challenging and difficult task for Japanese health professionals, and there is an urgent need to develop new strategies to improve family care [12]. Conducting family meetings using a questionnaire to establish the agenda is a new communication method developed in Australia and not yet introduced in Japan. In accordance with these circumstances, we evaluated the (1) utility of pre-and post-family meeting questionnaires in Japanese language, (2) the primary concerns of Japanese family carers who care for terminal cancer patients in an acute care hospital, and (3) the main issues discussed in family meetings in order to explore opportunities to improve family care in Japan. In accordance with the study aims, we were able to demonstrate the utility of the questionnaire as an effective communication guide between health professionals and the patients’ families. Based on the information gathered during the pre-meeting questionnaire, we were able to ensure the most appropriate health professionals were in attendance to respond to the family’s concerns. The patient’s current medical condition and treatment were explained by their oncologists, whereas symptom management, discharge planning, and primary carer’s fears and concerns were addressed by the palliative care specialist. In this study, we could highlight the primary carer’s anxiety using a numerical rating scale. Interestingly, compared to the original study conducted in Australia, carers’ confidence to deal with the problem was particularly low in Japanese families. In Australian families, it was reported that the mean confidence level prior to meeting was 6.35, where after the meeting, there was no statistically significant change of 6.56 [6]. On the other hand, in the Japanese families, mean confidence level was 2.923 prior to the meeting and after the meeting, confidence level improved significantly to the mean level of 5.231 (p<0.00548). It is possible that the difference in timing of family meetings conducted might have affected the family’s readiness to deal with the problem; Japanese family meetings were conducted at the time of discharge planning, while Australian family meetings were conducted soon after admission. Another explanation may be possible based on how family meetings were conducted in this research setting. In Japan, it was reported that Japanese oncologist’s professional behaviors such as ensuring the patient’s comfort and coaching the family on how to care for the patient has been correlated with lower level of emotional distress for family carers [12]. However, it has been very

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difficult to ensure effective communication strategies to all Japanese oncologists who conduct family meetings under the pressure of their busy clinical practice. Oncologists may be able to answer patient’s questions about their medical condition and treatment plan but they may not have enough time to address the carer’s emotions. Attendance of a palliative care specialist during the family meeting may have provided emotional support to vent family’s feelings and dispel their fears while caring for their dying relatives. More studies are needed to understand the specific impact of palliative care specialists during the terminal cancer patient’s family meetings in Japan. The limitation of this study is that the number of participants is small and the subjects are a selected group of Japanese families admitted to a single institution. Despite these limitations, our data indicate that introduction of the questionnaire during family meetings had a positive impact on both Japanese families and health professionals; Japanese families appreciated that the primary carer’s main agenda were carefully addressed during family meetings and the questionnaire became an essential information exchange tools for health professionals for effective and efficient communication. More studies are needed with collaboration with other facilities in order to spread this remarkable tool as part of routine family care in Japan.

Conclusions In conclusion, our study indicates that the clinical guidelines developed in Australia for conducting palliative care family meetings was useful to address primary carer’s concerns in Japanese cancer patients. In addition, we have numerically demonstrated statistically significant improvement of primary carer’s psychological well-being in the post-meeting questionnaires compared to the pre-meeting questionnaires. Further research with a larger sample and via a controlled trial is recommended. Since completing the research, the use of pre- and post-meeting questionnaires has been continued in some cases of family meetings in University of Tokyo. The authors hope that it is to be used in all the cases of family meetings and become a part of regular practice with carers in Japan.

Conflict of interest We have nothing to declare in relation to conflicts of interest. We, the authors, all agree to submit the manuscript and are responsible for the contents.

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