Palliative care for advanced dementia in Japan: knowledge and attitudes Miharu Nakanishi and Yuki Miyamoto
This study examined factors contributing to the knowledge and attitudes of nursing home staff regarding palliative care for advanced dementia in Japan. A cross-sectional survey of 275 nurses and other care workers from 74 longterm care facilities was conducted across three prefectures in August 2014. The Japanese versions of the Questionnaire on Palliative Care for Advanced Dementia (qPAD) and Frommelt Attitudes Toward Care of the Dying scale, Form B (FATCOD-B-J) were used. Greater knowledge was exhibited among nursing home staff in facilities that established a manual for end-of-life care. Higher levels of positive attitudes were observed among nursing home staff in facilities that had established a manual and those in facilities with a physician’s written opinions on end-of-life care. An organisational effort should be explored to establish end-of-life care policies among nursing home staff for advanced dementia.
insurance (LTCI) was established in 2000 for elderly individuals, and the LTCI programme covers residential care packages in nursing homes as well as home care services. Under the public health insurance scheme, hospice service and the use of opioids for pain relief are available only for patients with end-stage cancer (Yamagishi et al, 2008). However, quality of end-of-life care is highly important for residents with dementia in Japan. Japanese residents in nursing homes receive several burdensome interventions such as tube feeding (Ikegami and Ikezaki, 2012; Nakanishi and Hattori, 2014), cardio-pulmonary resuscitation (Ikegami and Ikezaki, 2012), and hospital transfer in the end-of-life phase (Ikegami and Ikezaki, 2012; Ikegami and Ikezaki, 2013). Knowledge and attitudes of nursing home staff regarding palliative care may affect the implementation of these interventions for dying residents.
Key words: Attitude ■ Dementia ■ Long-term care ■ Nurse ■ Nursing homes ■ Palliative care
Aim
D
ementia is an important, growing public health problem worldwide (World Health Organization, 2012). Nursing homes are important providers of end-of-life care for people with dementia (Houttekier et al, 2010; Callahan et al, 2012;Teno et al, 2013). Meanwhile, providing the best possible quality of care for people with dementia can be a challenge for nursing homes. Residents with advanced dementia sometimes undergo burdensome interventions including hospitalisation (Mitchell et al, 2004a; Mitchell et al, 2009; Gozalo et al, 2011), tube feeding (Mitchell et al, 2004b; Mitchell et al, 2009), and restraints (Mitchell et al, 2004b) In Japan, along with an ageing population, the annual number of deaths owing to dementia has increased from 3309 in 1999 to 18 175 in 2013 (Ministry of Health, Labour and Welfare, 2014). Further, the percentage of deaths owing to dementia compared with all nursing home deaths has risen from 15.7% in 1999 to 36.6% in 2013. Mandatory public long-term care Miharu Nakanishi, Chief Researcher, Mental Health and Nursing Research Team, Department of Psychiatry and Behavioural Science, Tokyo Metropolitan Institute of Medical Science; Yuki Miyamoto, Associate Professor, Department of Psychiatric Nursing, Graduate School of Medicine, University of Tokyo Accepted for publication: June 2015
146
Several studies in Japan have focused on the knowledge and attitudes of physicians or nurses regarding dying patients, typically patients with cancer (Morita et al, 2006; Yamagishi et al, 2012). The general public of Japan have demonstrated limited understanding of prognosis for dementia (Arai et al, 2008). However, no research has examined the factors related to knowledge and attitudes of nursing home staff regarding palliative care for patients with advanced dementia in Japan. This was, therefore, the aim of the present study.
Methodology The present study was conducted using a cross-sectional study design, in nursing homes in Japan, in August 2014. Subjects were recruited from long-term care facilities across three prefectures (Shiga, Saga, and Tottori). The location was selected based on the percentage of deaths in long-term care facilities compared with all deaths in each prefecture as reported in Vital Statistics 2012 (Ministry of Health, Labour and Welfare, 2013). The rates were 4.8% (low), 7.1% (middle), and 12.5% (high) in Shiga, Saga, and Tottori, respectively. There were 337 facilities listed in total across the three prefectures’ online databases at the end of April 2014. The questionnaires were administered over a 4-week period in August 2014.A set of paper questionnaires was posted to each participating facility. The completed questionnaires were also collected by post. A reminder postcard was sent in September 2014. Each facility was asked to distribute questionnaires to three nurses and three other care workers to include both
© 2016 MA Healthcare Ltd
ABSTRACT
British Journal of Nursing, 2016, Vol 25, No 3
British Journal of Nursing. Downloaded from magonlinelibrary.com by 128.119.168.112 on February 19, 2016. For personal use only. No other uses without permission. . All rights reserved.
Measurements Subjects were asked to complete a self-administered questionnaire anonymously. The questionnaire consisted of questions about knowledge and attitudes regarding palliative care for advanced dementia, attitudes toward care of terminally ill patients, and personal and role-related characteristics. Each managing director was also asked to provide information on the facility’s policy on end-of-life care. Facility characteristics were obtained from the long-term care service information in the nationwide online database managed by the Ministry of Health, Labour and Welfare. LTCI service providers are required to submit an annual report on long-term care service information to the prefectural government. Facility characteristics included type of facilities, ownership, number of beds, and number of fulltime-equivalent (FTE) physicians per 100 beds. Attitudes toward palliative care were assessed using two independent scales to distinguish palliative care in dementia from palliative care in the general population. Knowledge and attitudes were assessed using the Japanese version of the Questionnaire on Palliative Care for Advanced Dementia (qPAD) scale. The qPAD is a two-part instrument with 23 knowledge test items and 12 attitude scale statements (Long, 2009; Long et al, 2012). Each item of the knowledge test is answered with 1 (agree), 2 (disagree), or 3 (don’t know). Responses are scored as 1 (correct) or 0 (incorrect). The total number of correct answers is used for the analysis. Higher scores represent greater knowledge about palliative care for advanced dementia. Each item of the attitude scale was evaluated using a 5-point Likert scale ranging from 1 (strongly disagree) to 5 (strongly agree). Subscale scores were computed for three dimensions: job satisfaction, perceptions and beliefs, and work setting support of families. Higher scores represent greater positive attitudes 148
toward palliative care for dementia. Satisfactory validity and reliability was reported for the original version (Long et al, 2012) and Japanese version (Nakanishi et al, 2015a). A total score for the Japanese qPAD attitude scale was used for analysis. Attitudes toward palliative care for terminally ill patients were assessed using the short version of Japanese Frommelt Attitudes Toward Care of the Dying Scale, Form B (FATCOD-B-J). The FATCOD-B-J was developed from the English version of the FATCOD (Frommelt, 1991; Frommelt, 2003).The short version of FATCOD-B-J has six items, and total scores range from 6 to 30. A higher score indicates a more positive attitude toward palliative care for terminally ill patients. The Japanese version of FATCOD-B-J has demonstrated acceptable reliability and validity (Miyashita et al, 2007). Personal characteristics that were measured included age, gender, profession, and education level. Education level was scored on a scale of 1–4 (1=junior high school; 2=high school; 3=vocational school or junior college; 4=university). Rolerelated characteristics included profession and tenure as a care worker. The authors also asked about the total number of residents for whom the care worker provided end-of-life care; however, some care workers responded with ambiguous answers such as: ‘10–20 cases,’ ‘a little,’ and ‘many’ (n=29, 11%). Therefore, the authors simply used the presence of experience with providing end-of-life care for the analysis. The facility’s policy on end-of-life care included the following four measures: establishment of a manual, implementation of staff training, presence of physician’s written opinion on the appropriateness of end-of-life care in the facility, and routine documentation of each resident’s preferences regarding endof-life care in the facility. These items were derived from the quality measures for end-of-life care under the long-term care service information system, and they were incorporated to cover all three types of facility. Ethical considerations The study was approved by the Ethics Review Board of the Institute for Health Economics and Policy (H25-003) and the Tokyo Metropolitan Institute of Medical Science (14-20).The study protocol was in line with the provisions set forth in the Declaration of Helsinki. The questionnaire contained an introductory section explaining the purpose of the study, the voluntary nature of participation, and the assurance of respondents’ anonymity. Participating care workers were not required to sign consent forms, and returning the questionnaire implied consent. Identification numbers were assigned to facilities and respondents. Analysis To test consistency between attitudes toward palliative care for advanced dementia and for terminally ill patients, pairwise correlation was examined for total scores of qPAD knowledge test, qPAD attitude scale, and FATCOD-B-J. Multilevel linear regression analyses were performed using qPAD knowledge test, qPAD attitude scale, and FATCOD-B-J score as the dependent variables. Multilevel linear regression analysis allows for dependency of outcome measures within
© 2016 MA Healthcare Ltd
employees who had provided end-of-life care to the elderly and those who had not yet done so.There is no authorised training/ qualification for end-of-life care in long-term care in Japan. A total of 89 facilities (response rate 26%) returned written questionnaires. Among these, 9 facilities provided no information regarding care workers and 80 facilities provided 313 employee-level (rather than facility-level) questionnaires. The final sample for analysis consisted of 275 fully completed questionnaires from 74 facilities (valid response rate 22%).The 275 employees included in the study had a higher rate of men (c2 (1 degree of freedom (df)=5.80, p=0.016) and fewer nurses (c2 (1 df)=4.93, p=0.026) compared to the 38 employees who were excluded from the study owing to incomplete responses on the questionnaire. The 74 facilities included in this study included more special nursing homes (facilities for permanent residence; c2 (2 df)=16.20, p
This study examined factors contributing to the knowledge and attitudes of nursing home staff regarding palliative care for advanced dementia in Japan. A cross-sectional survey of 275 nurses and other care workers from 74 longterm care facilities was conducted across three prefectures in August 2014. The Japanese versions of the Questionnaire on Palliative Care for Advanced Dementia (qPAD) and Frommelt Attitudes Toward Care of the Dying scale, Form B (FATCOD-B-J) were used. Greater knowledge was exhibited among nursing home staff in facilities that established a manual for end-of-life care. Higher levels of positive attitudes were observed among nursing home staff in facilities that had established a manual and those in facilities with a physician’s written opinions on end-of-life care. An organisational effort should be explored to establish end-of-life care policies among nursing home staff for advanced dementia.
insurance (LTCI) was established in 2000 for elderly individuals, and the LTCI programme covers residential care packages in nursing homes as well as home care services. Under the public health insurance scheme, hospice service and the use of opioids for pain relief are available only for patients with end-stage cancer (Yamagishi et al, 2008). However, quality of end-of-life care is highly important for residents with dementia in Japan. Japanese residents in nursing homes receive several burdensome interventions such as tube feeding (Ikegami and Ikezaki, 2012; Nakanishi and Hattori, 2014), cardio-pulmonary resuscitation (Ikegami and Ikezaki, 2012), and hospital transfer in the end-of-life phase (Ikegami and Ikezaki, 2012; Ikegami and Ikezaki, 2013). Knowledge and attitudes of nursing home staff regarding palliative care may affect the implementation of these interventions for dying residents.
Key words: Attitude ■ Dementia ■ Long-term care ■ Nurse ■ Nursing homes ■ Palliative care
Aim
D
ementia is an important, growing public health problem worldwide (World Health Organization, 2012). Nursing homes are important providers of end-of-life care for people with dementia (Houttekier et al, 2010; Callahan et al, 2012;Teno et al, 2013). Meanwhile, providing the best possible quality of care for people with dementia can be a challenge for nursing homes. Residents with advanced dementia sometimes undergo burdensome interventions including hospitalisation (Mitchell et al, 2004a; Mitchell et al, 2009; Gozalo et al, 2011), tube feeding (Mitchell et al, 2004b; Mitchell et al, 2009), and restraints (Mitchell et al, 2004b) In Japan, along with an ageing population, the annual number of deaths owing to dementia has increased from 3309 in 1999 to 18 175 in 2013 (Ministry of Health, Labour and Welfare, 2014). Further, the percentage of deaths owing to dementia compared with all nursing home deaths has risen from 15.7% in 1999 to 36.6% in 2013. Mandatory public long-term care Miharu Nakanishi, Chief Researcher, Mental Health and Nursing Research Team, Department of Psychiatry and Behavioural Science, Tokyo Metropolitan Institute of Medical Science; Yuki Miyamoto, Associate Professor, Department of Psychiatric Nursing, Graduate School of Medicine, University of Tokyo Accepted for publication: June 2015
146
Several studies in Japan have focused on the knowledge and attitudes of physicians or nurses regarding dying patients, typically patients with cancer (Morita et al, 2006; Yamagishi et al, 2012). The general public of Japan have demonstrated limited understanding of prognosis for dementia (Arai et al, 2008). However, no research has examined the factors related to knowledge and attitudes of nursing home staff regarding palliative care for patients with advanced dementia in Japan. This was, therefore, the aim of the present study.
Methodology The present study was conducted using a cross-sectional study design, in nursing homes in Japan, in August 2014. Subjects were recruited from long-term care facilities across three prefectures (Shiga, Saga, and Tottori). The location was selected based on the percentage of deaths in long-term care facilities compared with all deaths in each prefecture as reported in Vital Statistics 2012 (Ministry of Health, Labour and Welfare, 2013). The rates were 4.8% (low), 7.1% (middle), and 12.5% (high) in Shiga, Saga, and Tottori, respectively. There were 337 facilities listed in total across the three prefectures’ online databases at the end of April 2014. The questionnaires were administered over a 4-week period in August 2014.A set of paper questionnaires was posted to each participating facility. The completed questionnaires were also collected by post. A reminder postcard was sent in September 2014. Each facility was asked to distribute questionnaires to three nurses and three other care workers to include both
© 2016 MA Healthcare Ltd
ABSTRACT
British Journal of Nursing, 2016, Vol 25, No 3
British Journal of Nursing. Downloaded from magonlinelibrary.com by 128.119.168.112 on February 19, 2016. For personal use only. No other uses without permission. . All rights reserved.
Measurements Subjects were asked to complete a self-administered questionnaire anonymously. The questionnaire consisted of questions about knowledge and attitudes regarding palliative care for advanced dementia, attitudes toward care of terminally ill patients, and personal and role-related characteristics. Each managing director was also asked to provide information on the facility’s policy on end-of-life care. Facility characteristics were obtained from the long-term care service information in the nationwide online database managed by the Ministry of Health, Labour and Welfare. LTCI service providers are required to submit an annual report on long-term care service information to the prefectural government. Facility characteristics included type of facilities, ownership, number of beds, and number of fulltime-equivalent (FTE) physicians per 100 beds. Attitudes toward palliative care were assessed using two independent scales to distinguish palliative care in dementia from palliative care in the general population. Knowledge and attitudes were assessed using the Japanese version of the Questionnaire on Palliative Care for Advanced Dementia (qPAD) scale. The qPAD is a two-part instrument with 23 knowledge test items and 12 attitude scale statements (Long, 2009; Long et al, 2012). Each item of the knowledge test is answered with 1 (agree), 2 (disagree), or 3 (don’t know). Responses are scored as 1 (correct) or 0 (incorrect). The total number of correct answers is used for the analysis. Higher scores represent greater knowledge about palliative care for advanced dementia. Each item of the attitude scale was evaluated using a 5-point Likert scale ranging from 1 (strongly disagree) to 5 (strongly agree). Subscale scores were computed for three dimensions: job satisfaction, perceptions and beliefs, and work setting support of families. Higher scores represent greater positive attitudes 148
toward palliative care for dementia. Satisfactory validity and reliability was reported for the original version (Long et al, 2012) and Japanese version (Nakanishi et al, 2015a). A total score for the Japanese qPAD attitude scale was used for analysis. Attitudes toward palliative care for terminally ill patients were assessed using the short version of Japanese Frommelt Attitudes Toward Care of the Dying Scale, Form B (FATCOD-B-J). The FATCOD-B-J was developed from the English version of the FATCOD (Frommelt, 1991; Frommelt, 2003).The short version of FATCOD-B-J has six items, and total scores range from 6 to 30. A higher score indicates a more positive attitude toward palliative care for terminally ill patients. The Japanese version of FATCOD-B-J has demonstrated acceptable reliability and validity (Miyashita et al, 2007). Personal characteristics that were measured included age, gender, profession, and education level. Education level was scored on a scale of 1–4 (1=junior high school; 2=high school; 3=vocational school or junior college; 4=university). Rolerelated characteristics included profession and tenure as a care worker. The authors also asked about the total number of residents for whom the care worker provided end-of-life care; however, some care workers responded with ambiguous answers such as: ‘10–20 cases,’ ‘a little,’ and ‘many’ (n=29, 11%). Therefore, the authors simply used the presence of experience with providing end-of-life care for the analysis. The facility’s policy on end-of-life care included the following four measures: establishment of a manual, implementation of staff training, presence of physician’s written opinion on the appropriateness of end-of-life care in the facility, and routine documentation of each resident’s preferences regarding endof-life care in the facility. These items were derived from the quality measures for end-of-life care under the long-term care service information system, and they were incorporated to cover all three types of facility. Ethical considerations The study was approved by the Ethics Review Board of the Institute for Health Economics and Policy (H25-003) and the Tokyo Metropolitan Institute of Medical Science (14-20).The study protocol was in line with the provisions set forth in the Declaration of Helsinki. The questionnaire contained an introductory section explaining the purpose of the study, the voluntary nature of participation, and the assurance of respondents’ anonymity. Participating care workers were not required to sign consent forms, and returning the questionnaire implied consent. Identification numbers were assigned to facilities and respondents. Analysis To test consistency between attitudes toward palliative care for advanced dementia and for terminally ill patients, pairwise correlation was examined for total scores of qPAD knowledge test, qPAD attitude scale, and FATCOD-B-J. Multilevel linear regression analyses were performed using qPAD knowledge test, qPAD attitude scale, and FATCOD-B-J score as the dependent variables. Multilevel linear regression analysis allows for dependency of outcome measures within
© 2016 MA Healthcare Ltd
employees who had provided end-of-life care to the elderly and those who had not yet done so.There is no authorised training/ qualification for end-of-life care in long-term care in Japan. A total of 89 facilities (response rate 26%) returned written questionnaires. Among these, 9 facilities provided no information regarding care workers and 80 facilities provided 313 employee-level (rather than facility-level) questionnaires. The final sample for analysis consisted of 275 fully completed questionnaires from 74 facilities (valid response rate 22%).The 275 employees included in the study had a higher rate of men (c2 (1 degree of freedom (df)=5.80, p=0.016) and fewer nurses (c2 (1 df)=4.93, p=0.026) compared to the 38 employees who were excluded from the study owing to incomplete responses on the questionnaire. The 74 facilities included in this study included more special nursing homes (facilities for permanent residence; c2 (2 df)=16.20, p
