Research
Care managers’ views on death and caring for older cancer patients in Japan
Abstract
Care managers (CMs) have an important role in coordinating care for cancer patients who are in the end-of-life stage; however, little is known about their views of death and their experiences while caring for older cancer patients. This study was conducted to examine CMs’ views of death and caring for older cancer patients in a home care setting in Japan. Convenience sampling was undertaken, and 35 offices from 43 approached services agreed to participate. The final valid sample included responses from 136 CMs (90.7%). Most CMs, including nurses, care workers, home helpers, and social workers in home care settings, experienced difficulty in managing the care of cancer patients in the end-of-life stage. Respondents reported a wide array of experiences with end-of-life care, care management, and seminar attendance, and their ages and Frommelt Attitude Toward Care of the Dying (FATCOD) scores were associated factors. Moreover, multiple regression analysis indicated that better attitudes toward caring for the dying were positively associated with seminar attendance. These results suggest that CMs need education about palliative and end-of-life care in order to promote good home care for cancer patients. Key words: Attitude toward death l Care manager l Older adults l Japan
Miho Matsui is Professor, Nara Medical University, School of Nursing, 840 Shijo-Cho, Kashihara, Nara, Japan 634-8521; Emi Kanai is Certified Nurse in Palliative Care, Nara Medical University Hospital, Kashihara, Japan; Akiko Kitagawa is Assistant Professor, Mie University, School of Nursing, Tsu, Japan; Keiko Hattori is Associate Professor, Kawasaki University of Medical Welfare, Kurashiki, Japan Correspondence to: Miho Matsui miho1002@ naramed-u.ac.jp
606
T
he world population is rapidly ageing. From 2000 to 2050, the proportion of the world’s population over 60 years of age is expected to double from about 11% to 22% (World Health Organization, 2013). Japan is the world’s most quickly ageing country; its elderly population (people aged 65 or older) comprised 23.3% of its total number of inhabitants in 2011. Moreover, government officials projected that 33.4% would be in that age category by 2035 (Cabinet Office, 2012). Cancer is the primary cause of all deaths in Japan, but people over 90 are more likely to die from heart disease, pneumonia, and senility (Ministry of Health, Labour and Welfare, 2010). As the elderly population increases, the term ‘tashisyakai’ is often used, which means a society in which many deaths are occurring.
The increase in the Japanese super-aging population led to the enforcement of a regulation governing public long-term care (LTC) insurance in 2000. At first, the primary insured (those over 65 years of age) and secondary insured (those 40 to 65 years old) who were diagnosed with any of 15 age-related diseases, such as dementia, stroke, and Parkinson’s disease, were allowed to access services after the completion of appropriate inspections. In 2005, the regulation was revised to include the end-of-life stage of cancer for the secondary insured. That is, LTC services were made available to cancer patients who were over 40 years of age and in the end-of-life stage (Ministry of Health, Labour and Welfare, 2005a). LTC services include not only institutional treatment but also in-home care. Japanese government officials recommend home care to reduce medical and LTC expenditures (Ministry of Health, Labour and Welfare, 2005b). There are many in-home services, such as help with household tasks, nursing, rehabilitation, and bathing. Visiting centres offer day care, and some agencies offer short-term stays. Additionally, welfare pays for equipment rentals and provides allowances for home modifications. The care manager (CM) is a key person who coordinates these services for those who qualify. CMs provide consultation to people requiring long-term care and coordinate in-home services for people to live an independent daily life. In order to be a CM, one must have a medical licence (i.e. be a physician, dentist, pharmacist, nurse, physical therapist, occupational therapist, etc) or a welfare licence (i.e. be a social worker, care worker, home helper, etc) and have more than 5 years’ experience in his or her specialty. People who meet these requirements must take an examination to qualify as a CM, and in 2012 the pass rate was 19.2% (Ministry of Health, Labour and Welfare, 2012). According to the Ministry of Health, Labour and Welfare (2012), in 2012 9.8% of those holding licences were social workers, 8.9% were nurses, and 66.4%
© 2013 MA Healthcare Ltd
Miho Matsui, Emi Kanai, Akiko Kitagawa, Keiko Hattori
International Journal of Palliative Nursing 2013, Vol 19, No 12
© MA Healthcare Ltd. Downloaded from magonlinelibrary.com by 134.148.010.012 on December 21, 2016. Use for licensed purposes only. No other uses without permission. All rights reserved.
Research
were care workers. Additionally, in 2009, home care support offices reported that 7.0% of their employees were social workers, 22.9% were nurses, and 50.0% were care workers (Japan Care Manager Association, 2012). As mentioned above, qualified CMs do not necessarily have experience of working in a medical facility, and they have reported experiencing difficulties in managing the care of cancer patients in the end-of-life stage. A comparative study between nurses and other staff groups showed that social workers and care workers felt more anxiety about the patient’s condition and therapy than nursing staff (Furumoto et al, 2010). A study investigating issues experienced by CMs (45.8% welfare, 34.7% nurses, 18.3% other) reported that they had a need to study treatment and end-of-life care (Harada, 2012). To provide appropriate LTC services for people with cancer, it is necessary to do research regarding end-of-life care, including providers’ attitudes. Currently, little is known about CMs’ views. Several studies have reported nurses’ attitudes toward death and dying in patient care using an instrument called the Frommelt Attitude Toward Care of the Dying (FATCOD) scale (Frommelt, 1991). The FATCOD scale assesses attitudes toward caring for terminally ill people and their family members and can therefore be useful in home care settings. Lange et al (2008) indicated that there were significant relationships between respondents’ nursing experience, age, and their scores on the FATCOD and the Death Attitude Profile-Revised (DAP-R) (Wong et al, 1994). All respondents in their study worked at a comprehensive cancer centre in New York. Matsui and Braun (2010) investigated nurses’ and care workers’ attitudes toward death and caring for dying Japanese older adults in convalescent hospitals and in long-term care facilities, and their results indicated significant associations between FATCOD scores, end-of-life seminar attendance, and DAP scores (Gesser et al, 1987). Although Matsui and Braun’s (2010) study reported both nurses’ and care workers’ attitudes, little is known about the views of providers working in the home care setting.
© 2013 MA Healthcare Ltd
Aim The purpose of this study was to assess CMs’ views of death and caring for older people with cancer and to examine factors related to their attitudes in a home care setting.
Design
Methodology
A cross-sectional, descriptive, correlational design was used to gather data through a
International Journal of Palliative Nursing 2013, Vol 19, No 12
self-administered questionnaire in July and August 2010.
Ethics The study was approved by the institutional review board of Nagasaki University. Participants were informed in writing about their freedom to voluntarily participate, refuse to participate, and withdraw from participation, as well as about the anonymity of the questionnaire, protection of participant privacy, and the intention to publish the study results.
Setting and participants
❛Despite the differences in their backgrounds, most of the respondents felt that managing the care of cancer patients was difficult.❜
The study was conducted among home care support service offices in Nagasaki City, in western Japan. There are 128 home care support offices in Nagasaki City, and convenience sampling of 43 of them was undertaken. Eight offices declined to participate, with 35 agreeing. Questionnaires were sent to 150 CMs in these offices; 140 (93.3%) were returned, and the final sample was 136 CMs (90.7%).
Instruments The survey items included questions to gather demographic data, such as age; gender; certification; work experience at the current office; previous experience providing end-of-life care, care of dying older patients (65 years and over), and care management for cancer patients—plus the difficulty of providing such management; and attendance at seminars about end-of-life care. The FATCOD Scale, Form B is a 30-item tool that assesses respondents’ attitudes toward caring for dying patients and their families (Frommelt, 1991). It has an equal number of positively and negatively worded items, which are rated on a five-point Likert scale (scoring is reversed for negatively worded items). Possible scores range from 30 to 150, with higher scores indicating more positive attitudes. Braun et al (2010) reported that the internal reliability of the tool was high, at 0.85. The FATCOD B Japanese version also has a high internal reliability score of 0.85 (Nakai et al, 2006), but the researchers found that it has two domains after factor analysis: FATCOD I, positive attitudes toward caring for the dying patient (Cronbach alpha=0.73), and FATCOD II, perceptions of patient- and family-centred care (Cronbach alpha=0.65) (Nakai et al, 2006). The DAP (Gesser et al, 1987) was used to assess respondents’ personal attitudes toward death. It is a 21-item self-administered questionnaire with four dimensions: fear of death, escape
607 © MA Healthcare Ltd. Downloaded from magonlinelibrary.com by 134.148.010.012 on December 21, 2016. Use for licensed purposes only. No other uses without permission. All rights reserved.
Research
Table 1. Demographic characteristics Characteristic
Number
Percentage
Female
102
75.0%
Male
34
25.0%
Nurse
27
19.9%
Care worker
71
52.2%
Home helper
12
8.8%
Social worker
11
8.1%
Yes
97
73.5%
No
35
26.5%
Yes
74
58.3%
No
53
41.7%
Yes
93
69.4%
No
41
30.6%
Yes
83
62.4%
No
50
37.6%
Gender
Background certification (n=116)
participants’ mean years of work experience was 4.6 (SD=3.4), and 19.9% of them were certified nurses, 52.2% care workers, 8.8% home helpers, and 8.1% social workers. Regarding end-of-life care experience, 73.5% reported providing end-of-life care, and 58.3% had provided care for dying older patients. Additionally, 69.4% had provided care management for cancer patients, and 95.4% of these reported experiencing difficulties with care management (38.6% ‘some’ and 56.8% ‘quite a lot’). Moreover, 62.4% had attended a seminar about end-of-life care (Table 1).
Experience of end-of-life care (n=132)
Experience of providing care management for a person with cancer (n=134)
Attendance at seminars about end-of-life care (n=133)
acceptance (the extent to which death is seen as a way of escaping from the negative aspects of life), approach acceptance (relating to beliefs in an afterlife), and neutral acceptance (acceptance of death as a natural part of life). The participants responded to each item using a five-point agree–disagree Likert-type scale. The internal consistency for each dimension in the Japanese version, tested using Cronbach’s alpha, is alpha=0.71 for fear of death, alpha=0.69 for approach acceptance, alpha=0.52 for escape acceptance, and alpha=0.42 for neutral acceptance (Kawai et al, 1996).
Data analysis Descriptive statistics and the t-test were used to compare the differences between responses to the FATCOD and DAP related to previous experiences with end-of-life care, care of dying older patients, care management, and seminar attendance. To examine factors associated with the FATCOD, a multiple regression analysis was used. The data was analysed using IBM SPSS for Windows, version 21.0.
608
Table 2 shows the results of an analysis of FATCOD and DAP scores according to experience of providing end-of-life care as well as experience of caring for dying older patients. The participants with and without experience of providing end-of-life care significantly differed with regard to their age (P=0.023), work experience (P=0.010), FATCOD score (P=0.011), and FATCOD I score (P=0.002). However, the participants with and without experience of caring for dying older patients significantly differed only in terms of their age (P
Care managers’ views on death and caring for older cancer patients in Japan
Abstract
Care managers (CMs) have an important role in coordinating care for cancer patients who are in the end-of-life stage; however, little is known about their views of death and their experiences while caring for older cancer patients. This study was conducted to examine CMs’ views of death and caring for older cancer patients in a home care setting in Japan. Convenience sampling was undertaken, and 35 offices from 43 approached services agreed to participate. The final valid sample included responses from 136 CMs (90.7%). Most CMs, including nurses, care workers, home helpers, and social workers in home care settings, experienced difficulty in managing the care of cancer patients in the end-of-life stage. Respondents reported a wide array of experiences with end-of-life care, care management, and seminar attendance, and their ages and Frommelt Attitude Toward Care of the Dying (FATCOD) scores were associated factors. Moreover, multiple regression analysis indicated that better attitudes toward caring for the dying were positively associated with seminar attendance. These results suggest that CMs need education about palliative and end-of-life care in order to promote good home care for cancer patients. Key words: Attitude toward death l Care manager l Older adults l Japan
Miho Matsui is Professor, Nara Medical University, School of Nursing, 840 Shijo-Cho, Kashihara, Nara, Japan 634-8521; Emi Kanai is Certified Nurse in Palliative Care, Nara Medical University Hospital, Kashihara, Japan; Akiko Kitagawa is Assistant Professor, Mie University, School of Nursing, Tsu, Japan; Keiko Hattori is Associate Professor, Kawasaki University of Medical Welfare, Kurashiki, Japan Correspondence to: Miho Matsui miho1002@ naramed-u.ac.jp
606
T
he world population is rapidly ageing. From 2000 to 2050, the proportion of the world’s population over 60 years of age is expected to double from about 11% to 22% (World Health Organization, 2013). Japan is the world’s most quickly ageing country; its elderly population (people aged 65 or older) comprised 23.3% of its total number of inhabitants in 2011. Moreover, government officials projected that 33.4% would be in that age category by 2035 (Cabinet Office, 2012). Cancer is the primary cause of all deaths in Japan, but people over 90 are more likely to die from heart disease, pneumonia, and senility (Ministry of Health, Labour and Welfare, 2010). As the elderly population increases, the term ‘tashisyakai’ is often used, which means a society in which many deaths are occurring.
The increase in the Japanese super-aging population led to the enforcement of a regulation governing public long-term care (LTC) insurance in 2000. At first, the primary insured (those over 65 years of age) and secondary insured (those 40 to 65 years old) who were diagnosed with any of 15 age-related diseases, such as dementia, stroke, and Parkinson’s disease, were allowed to access services after the completion of appropriate inspections. In 2005, the regulation was revised to include the end-of-life stage of cancer for the secondary insured. That is, LTC services were made available to cancer patients who were over 40 years of age and in the end-of-life stage (Ministry of Health, Labour and Welfare, 2005a). LTC services include not only institutional treatment but also in-home care. Japanese government officials recommend home care to reduce medical and LTC expenditures (Ministry of Health, Labour and Welfare, 2005b). There are many in-home services, such as help with household tasks, nursing, rehabilitation, and bathing. Visiting centres offer day care, and some agencies offer short-term stays. Additionally, welfare pays for equipment rentals and provides allowances for home modifications. The care manager (CM) is a key person who coordinates these services for those who qualify. CMs provide consultation to people requiring long-term care and coordinate in-home services for people to live an independent daily life. In order to be a CM, one must have a medical licence (i.e. be a physician, dentist, pharmacist, nurse, physical therapist, occupational therapist, etc) or a welfare licence (i.e. be a social worker, care worker, home helper, etc) and have more than 5 years’ experience in his or her specialty. People who meet these requirements must take an examination to qualify as a CM, and in 2012 the pass rate was 19.2% (Ministry of Health, Labour and Welfare, 2012). According to the Ministry of Health, Labour and Welfare (2012), in 2012 9.8% of those holding licences were social workers, 8.9% were nurses, and 66.4%
© 2013 MA Healthcare Ltd
Miho Matsui, Emi Kanai, Akiko Kitagawa, Keiko Hattori
International Journal of Palliative Nursing 2013, Vol 19, No 12
© MA Healthcare Ltd. Downloaded from magonlinelibrary.com by 134.148.010.012 on December 21, 2016. Use for licensed purposes only. No other uses without permission. All rights reserved.
Research
were care workers. Additionally, in 2009, home care support offices reported that 7.0% of their employees were social workers, 22.9% were nurses, and 50.0% were care workers (Japan Care Manager Association, 2012). As mentioned above, qualified CMs do not necessarily have experience of working in a medical facility, and they have reported experiencing difficulties in managing the care of cancer patients in the end-of-life stage. A comparative study between nurses and other staff groups showed that social workers and care workers felt more anxiety about the patient’s condition and therapy than nursing staff (Furumoto et al, 2010). A study investigating issues experienced by CMs (45.8% welfare, 34.7% nurses, 18.3% other) reported that they had a need to study treatment and end-of-life care (Harada, 2012). To provide appropriate LTC services for people with cancer, it is necessary to do research regarding end-of-life care, including providers’ attitudes. Currently, little is known about CMs’ views. Several studies have reported nurses’ attitudes toward death and dying in patient care using an instrument called the Frommelt Attitude Toward Care of the Dying (FATCOD) scale (Frommelt, 1991). The FATCOD scale assesses attitudes toward caring for terminally ill people and their family members and can therefore be useful in home care settings. Lange et al (2008) indicated that there were significant relationships between respondents’ nursing experience, age, and their scores on the FATCOD and the Death Attitude Profile-Revised (DAP-R) (Wong et al, 1994). All respondents in their study worked at a comprehensive cancer centre in New York. Matsui and Braun (2010) investigated nurses’ and care workers’ attitudes toward death and caring for dying Japanese older adults in convalescent hospitals and in long-term care facilities, and their results indicated significant associations between FATCOD scores, end-of-life seminar attendance, and DAP scores (Gesser et al, 1987). Although Matsui and Braun’s (2010) study reported both nurses’ and care workers’ attitudes, little is known about the views of providers working in the home care setting.
© 2013 MA Healthcare Ltd
Aim The purpose of this study was to assess CMs’ views of death and caring for older people with cancer and to examine factors related to their attitudes in a home care setting.
Design
Methodology
A cross-sectional, descriptive, correlational design was used to gather data through a
International Journal of Palliative Nursing 2013, Vol 19, No 12
self-administered questionnaire in July and August 2010.
Ethics The study was approved by the institutional review board of Nagasaki University. Participants were informed in writing about their freedom to voluntarily participate, refuse to participate, and withdraw from participation, as well as about the anonymity of the questionnaire, protection of participant privacy, and the intention to publish the study results.
Setting and participants
❛Despite the differences in their backgrounds, most of the respondents felt that managing the care of cancer patients was difficult.❜
The study was conducted among home care support service offices in Nagasaki City, in western Japan. There are 128 home care support offices in Nagasaki City, and convenience sampling of 43 of them was undertaken. Eight offices declined to participate, with 35 agreeing. Questionnaires were sent to 150 CMs in these offices; 140 (93.3%) were returned, and the final sample was 136 CMs (90.7%).
Instruments The survey items included questions to gather demographic data, such as age; gender; certification; work experience at the current office; previous experience providing end-of-life care, care of dying older patients (65 years and over), and care management for cancer patients—plus the difficulty of providing such management; and attendance at seminars about end-of-life care. The FATCOD Scale, Form B is a 30-item tool that assesses respondents’ attitudes toward caring for dying patients and their families (Frommelt, 1991). It has an equal number of positively and negatively worded items, which are rated on a five-point Likert scale (scoring is reversed for negatively worded items). Possible scores range from 30 to 150, with higher scores indicating more positive attitudes. Braun et al (2010) reported that the internal reliability of the tool was high, at 0.85. The FATCOD B Japanese version also has a high internal reliability score of 0.85 (Nakai et al, 2006), but the researchers found that it has two domains after factor analysis: FATCOD I, positive attitudes toward caring for the dying patient (Cronbach alpha=0.73), and FATCOD II, perceptions of patient- and family-centred care (Cronbach alpha=0.65) (Nakai et al, 2006). The DAP (Gesser et al, 1987) was used to assess respondents’ personal attitudes toward death. It is a 21-item self-administered questionnaire with four dimensions: fear of death, escape
607 © MA Healthcare Ltd. Downloaded from magonlinelibrary.com by 134.148.010.012 on December 21, 2016. Use for licensed purposes only. No other uses without permission. All rights reserved.
Research
Table 1. Demographic characteristics Characteristic
Number
Percentage
Female
102
75.0%
Male
34
25.0%
Nurse
27
19.9%
Care worker
71
52.2%
Home helper
12
8.8%
Social worker
11
8.1%
Yes
97
73.5%
No
35
26.5%
Yes
74
58.3%
No
53
41.7%
Yes
93
69.4%
No
41
30.6%
Yes
83
62.4%
No
50
37.6%
Gender
Background certification (n=116)
participants’ mean years of work experience was 4.6 (SD=3.4), and 19.9% of them were certified nurses, 52.2% care workers, 8.8% home helpers, and 8.1% social workers. Regarding end-of-life care experience, 73.5% reported providing end-of-life care, and 58.3% had provided care for dying older patients. Additionally, 69.4% had provided care management for cancer patients, and 95.4% of these reported experiencing difficulties with care management (38.6% ‘some’ and 56.8% ‘quite a lot’). Moreover, 62.4% had attended a seminar about end-of-life care (Table 1).
Experience of end-of-life care (n=132)
Experience of providing care management for a person with cancer (n=134)
Attendance at seminars about end-of-life care (n=133)
acceptance (the extent to which death is seen as a way of escaping from the negative aspects of life), approach acceptance (relating to beliefs in an afterlife), and neutral acceptance (acceptance of death as a natural part of life). The participants responded to each item using a five-point agree–disagree Likert-type scale. The internal consistency for each dimension in the Japanese version, tested using Cronbach’s alpha, is alpha=0.71 for fear of death, alpha=0.69 for approach acceptance, alpha=0.52 for escape acceptance, and alpha=0.42 for neutral acceptance (Kawai et al, 1996).
Data analysis Descriptive statistics and the t-test were used to compare the differences between responses to the FATCOD and DAP related to previous experiences with end-of-life care, care of dying older patients, care management, and seminar attendance. To examine factors associated with the FATCOD, a multiple regression analysis was used. The data was analysed using IBM SPSS for Windows, version 21.0.
608
Table 2 shows the results of an analysis of FATCOD and DAP scores according to experience of providing end-of-life care as well as experience of caring for dying older patients. The participants with and without experience of providing end-of-life care significantly differed with regard to their age (P=0.023), work experience (P=0.010), FATCOD score (P=0.011), and FATCOD I score (P=0.002). However, the participants with and without experience of caring for dying older patients significantly differed only in terms of their age (P
