A Family s Difficulties in Caring for a Cancer Patient at the End of Life at Home in Japan

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1 552 Journal of Pain and Symptom Management Vol. 44 No. 4 October 2012 Original Article A Family s Difficulties in Caring for a Cancer Patient at the End of Life at Home in Japan Yoko Ishii, RN, MHSc, Mitsunori Miyashita, RN, PhD, Kazuki Sato, RN, PhD, and Taketoshi Ozawa, MD, PhD Ohtawara Red Cross Hospital (Y.I.), Tochigi; Department of Palliative Care Nursing (M.M., K.S.), Health Sciences, University of Tohoku, Miyagi; and Megumi Home Care Clinic (T.O.), Yokohama, Japan Abstract Context. Most people hoped for home care at the end of life and death at home in Japan. However, the rate for death at home from cancer in Japan is less than 10% of the total deaths of cancer patients. Objectives. The aim of this study was to investigate circumstances, difficulties, and correlated factors for family caregivers who provided care at home for a family member with terminal cancer. Methods. The Family s Difficulty Scale for end-of-life home care questionnaire was sent to 395 bereaved family caregivers who had cared for a terminal cancer patient with the assistance of home services. Results. We obtained 306 responses for a response rate of 81%. The results showed that family caregivers had a high rate of difficulties related to Patient s pain and condition (64%w90%) and Burden of care (61%w78%). A logistic regression analysis was performed on the data to examine factors related to the difficulties. More difficulties occurred for male caregivers (odds ratio [OR] ¼ 0.39, P ¼ 0.04) who did not prefer for the patient to die at home (OR ¼ 0.42, P ¼ 0.01). Conclusion. This study indicates that it is important for home care providers to introduce services to reduce care burden. In addition, a thorough explanation of the patient s symptoms and condition is necessary to reduce distress and anxiety for family caregivers. J Pain Symptom Manage 2012;44:552e562. Ó 2012 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved. Key Words Terminal care, home care service, cancer patient, family caregiver, difficulty Introduction A study conducted in Japan reported that more than half of the general public hoped Address correspondence to: Yoko Ishii, RN, MHSc, Ohtawara Red Cross Hospital, Sumiyoshi-chou, Ohtawara-shi, Tochigi , Japan. yokoishii49@yahoo.co.jp Accepted for publication: October 10, Ó 2012 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved. for home care at the end of life and for death at home. 1 Approximately 60% of bereaved family members of cancer patients who received home care also hoped for home care at the end of life and approximately 70% hoped for a home death. 2 Although policy regarding home care is promoted and many Japanese hope for home care at the end of life, the rate for death at home from cancer in Japan is only 7.3% of the total cancer patient deaths /$ - see front matter doi: /j.jpainsymman

2 Vol. 44 No. 4 October 2012 Difficulties in Caring for a Cancer Patient at Home 553 Family caregivers have an essential role in home care for cancer patients at the end of life. They provide daily care and also emotional support for their loved one. 4e8 However, in a study concerning home care of terminal cancer patients, patients who hoped to stay at home had to be admitted to the hospital because their family caregivers were exhausted and overly anxious. 9,10 Especially for cancer patients at the end of life, there are distressing symptoms, such as fatigue, pain, and dyspnea, and typically the symptoms are not well controlled and the patients endure extreme suffering. 11 Therefore, most family caregivers face many difficulties in caring for a patient at home and have physical and emotional distress as a result of the burden of care. 5,8,12,13 For this reason, we recommend that a survey of the family s difficulties is needed. However, few studies have focused on the difficulties involved in caring for family caregivers of terminal cancer patients, although some studies have evaluated the care burden of family caregivers who care for the elderly or people with dementia in Japan. 14e16 Home care providers must offer care to reduce the burden for family caregivers to decrease anxiety for both patient and caregiver. Thus, we consider that it is important to investigate the difficulties of the family caregivers of terminal cancer patients at home to evaluate issues and discuss ways to improve the situation. We investigated the circumstances, difficulties, and correlated factors for family caregivers of terminal cancer patients. In this study, we defined difficulty as having trouble with and worry about patient care for the family caregiver. Methods Participants The participants were the bereaved family members of cancer patients who used the services of a home care clinic, home visit nurses, or a case management agency that provided 24-hour home care services. The home care service was offered by home care providers who were familiar with care of terminal cancer patients. The inclusion criteria were the following: 1) patient had home care for more than five days; 2) patient died at least six months ago but not longer than two and a half years ago, in consideration of the length of the time that has relieved grief of the bereaved family caregiver and recall bias; 3) family caregiver and patient were both over 20 years of age; 4) family caregiver was a primary caregiver; and 5) family caregiver knew about the patient s diagnosis of cancer. The participants who had dementia, mental disorders, or those who were absorbed in their grief were excluded from this study. Procedure We asked the participating facilities to select potential subjects who met the inclusion criteria. The facilities then sent an admission questionnaire and prospectus for the study to the subjects by mail. The period of the survey was from July to October We asked for the return of the questionnaires within a month, regardless of participation or nonparticipation in the survey, via an enclosed envelope. We regarded the return of completed questionnaires as obtaining the participant s consent. We asked that each facility send reminder letters when questionnaires were not returned within a month. The ethical and scientific validity of this study was approved by the Institutional Review Board of the Graduate School of Medicine, University of Tokyo. Measures Family s Difficulty Scale. The Family s Difficulty Scale (FDS) for end-of-life home care was developed in our previous study to measure the difficulties that family caregivers face during the care of terminal cancer patients at home. 17 The validity and reliability have been established for its use with the bereaved family of terminal cancer patients. It consists of 29 items within eight domains: Patient s pain and condition, Burden of care, Balance of work and care, Concerns about home care service, Funeral preparations, Relationship between family caregivers and their families, Concerns about home care doctor, and Concerns about visiting nurse. Participants were asked to rate the degree of difficulty for each item for the time frame of one month before the patient s death to the patient s death. Each item is rated on a six-point scale (1: completely disagree, 2: disagree, 3: somewhat disagree, 4: somewhat agree, 5: agree, 6: completely agree). Higher scores indicated that

3 554 Ishii et al. Vol. 44 No. 4 October 2012 the family caregivers faced greater difficulties. We treated the score of each domain and total of domain scores as dependent variables. The scale is described in the Appendix. Participant Characteristics and Relevant Variables. To examine factors related to the FDS, the data were extracted from the questionnaires. Areas of interest included the following: participant characteristics, whether the patient preferred death at home, whether the family caregiver preferred that the patient died at home, and the number of home visits by doctors and nurses the week before the patient s death. We asked participants about their age, sex, and employment status during the patient s care, whether they lived in the same household as the patient, and whether there was another informal caregiver present. We also asked the participating facilities about the patient s age, sex, place of death, the time lapse from diagnosis of cancer to death, and the kind of home care service that the patient used. We treated the participant characteristics and relevant variables as independent variables. Data Analysis We calculated the rate of response for each domain of the FDS. Completely agree (6) to Somewhat agree (4) were considered evidence of difficulty faced by family caregivers. To examine the factors related to the FDS, we converted the score of each domain and total scores of each domain to a 100-point scale (range: 0e100); 50 points was set as the cutoff. Scores greater than 50 points were considered as presence of difficulty. We performed the following analyses to explore the factors associated with difficulties: to determine the dependent variables for a multivariate logistic regression analysis, univariate logistic regression analyses were conducted as a preliminary analysis. After univariate logistic regression analyses, we performed a multivariate logistic regression analysis using all potentially significant predictors identified by the univariate analyses (P < 0.2) as independent variables via backward elimination. In view of the multicollinearity, we also selected independent variables for which the correlation was less than 0.7 among the variables to contain the multivariate logistic regression model. All analyses were performed using SAS version 9.1 (SAS Institute Inc., Cary, NC). The significance level was set at P < 0.05 (two-tailed). Results Participants Of 395 questionnaires sent to the family caregivers who primarily cared for the patient, 18 were undeliverable and 306 were returned (response rate, 81%). Among these, 15 individuals refused to participate and 11 responses were excluded because of missing data. Thus, 280 responses were analyzed (effective response rate, 74%). Participant characteristics are shown in Table 1. Approximately 80% were female, and 60% were more than 60 years old. More than half were the patient s spouse, and more than 80% lived with the patient. As for patients, the mean age was years and about 70% died at home. Difficulties Encountered in the Home Care of the Terminal Cancer Patient From the responses obtained by using the FDS, the degree of difficulty is shown in Table 2. The rate of each item is displayed for every domain. In the FDS domains, the highest percentage of difficulty was related to Patient s pain and condition, Burden of care, and Balance of work and care ; the average rate of items in these domains accounted for 64% w90%, 61%w78%, and 42%w55%, respectively. The lowest percentage of difficulty was related to Concerns about home care doctor and Concerns about visiting nurse. The average rate of items in these domains accounted for 5% and 8%w13%, respectively. Factors Associated With Difficulties Factors associated with difficulties encountered in the home care of a terminal cancer patient are summarized in Table 3. When the patient died at a hospital, respondents were more likely to have difficulty related to Concerns about home care doctor (odds ratio [OR] ¼ 3.48, P ¼ 0.02). If the patient was married (OR ¼ 0.40, P ¼ 0.01) and female (OR ¼ 2.16, P ¼ 0.03), respondents were more likely to have difficulty related to Balance of work and care. When the patient did not hope to

4 Vol. 44 No. 4 October 2012 Difficulties in Caring for a Cancer Patient at Home 555 Table 1 Backgrounds of Patients and the Bereaved Family Caregivers (n ¼ 280) n % Bereaved families Sex Male Female Age, year 20e e e e e Over Relationship Spouse Child Child-in-law Parent Sibling Other Living status Living together Not living together No response Presence of other caregivers Present Absent No response Patients Sex Male Female Age, year (mean SD) Marital status Married Unmarried, estrangement, bereavement Place of death Home Hospital Unknown Period of home care Median 38 Mean SD die at home (OR ¼ 0.18, P ¼ <0.01) or if the patient was male (OR ¼ 0.17, P ¼ 0.01) or used less home visit nursing care a week before death (OR ¼ 0.45, P ¼ 0.03), and if the patient died in the hospital (OR ¼ 3.31, P ¼ 0.05), male respondents (OR ¼ 0.13, P ¼ 0.01) were more likely to have difficulty related to Concerns about visiting nurse. For patients who died in a hospital (OR ¼ 2.33, P ¼ 0.02) and were younger (OR ¼ 0.87, P ¼ 0.03), male respondents (OR ¼ 0.33, P ¼ 0.02) were more likely to have difficulty related to Concerns about home care service. Respondents who did not prefer the patient s death at home (OR ¼ 0.35, P < 0.01) and had no other informal caregiver (OR ¼ 0.40, P ¼ 0.01) were more likely to have difficulty related to Relationship between family caregivers and their families. Respondents who did not prefer the patient s death at home (OR ¼ 0.40, P < 0.01) or were patients spouses (OR ¼ 4.33, P ¼ 0.01) and younger (OR ¼ 0.63, P ¼ 0.02) were more likely to have difficulty related to preparations. In the overall evaluation for each domain, male respondents (OR ¼ 0.39, P ¼ 0.04) who did not prefer the patient s death at home (OR ¼ 0.42, P ¼ 0.01) were more likely to have difficulty throughout the duration of the patient s care at home. The difficulties for Burden of care and Patient s pain and condition had no significant association with any factors. Discussion This study was a quantitative survey clarifying the difficulties and correlated factors that family caregivers encounter in the home care of terminally ill cancer patients. Patient s pain and condition was the greatest difficulty, followed by Burden of care. Overall, difficulties were related to male gender and family caregiver preference that the patient would not die at home. For the overall evaluation of difficulty, more than half of family caregivers felt that their life with the patient was full of difficulties. It is apparent that family caregivers who care for a cancer patient during the end of life at home experience great physical and mental burdens. Patient s pain and condition, Burden of care, and Balance of work and care (domains of FDS) accounted for the greatest percentages of difficulty. We recommend a focus on these domains and the necessity of further study to alleviate these difficulties. Overall Evaluation of Difficulties In previous studies, factors of home care and home death were related to the patient s and family caregiver s preference for home death, lessened emotional distress, and the family s empowerment in caring for the patient. 9,18,19 It appeared that when family caregivers did not want the patient to die at home, there

5 556 Ishii et al. Vol. 44 No. 4 October 2012 Table 2 Difficulties Encountered in the Home Care of Terminal Cancer Patient Missing Data Completely Response Somewhat Somewhat Completely Presence of Difficulty Rated a Patient s pain and condition Bitterness because of patient s weakness Bitterness because of patient s suffering Family caregivers cannot deal with serious symptoms Family caregivers cannot do anything to relieve the patient s suffering Burden of care Family caregivers struggle to provide daily care for the patient Family caregivers experience hectic times everyday Family caregivers get insufficient sleep because of anxiety about the patient Family caregivers sacrifice for patient-centered life Family caregivers become shut-ins because of patient care Family caregivers experience physical stress during patient s care Balance of work and care Family caregivers have to consider whether they will quit their work because of caregiving Difficulties in managing work and the patient s care because care requires excessive time Family caregivers have to give up work to continue the patient s care % n % n % n % n % n % n % n % n % n % n % n % n % n Concerns about home care service Family caregivers do not % know how to use home care services n High cost of home medical care and services Insufficient information on how to correctly use home care services % n % n (Continued)

6 Vol. 44 No. 4 October 2012 Difficulties in Caring for a Cancer Patient at Home 557 Table 2 Continued Missing Data Completely Response Somewhat Somewhat Completely Presence of Difficulty Rated a Funeral preparations Family caregivers have trouble making funeral arrangements because preparation time is limited Family caregivers do not know how to arrange the funeral after the patient s death % n % n Relationship between family caregivers and their families Family caregivers cannot % consult with relatives about patient s recuperation n Relatives are divided over the place of care and death of the patient Family caregivers struggle with the burden of many opinions from relatives % n % n Concerns about home care doctor (N ¼ 256) Family caregivers cannot % express their ideas to home care doctor even though they may have different ideas n Home care doctors do not visit the patients when they need a home visit Insufficient control of patient s symptoms by home care doctor No explanation from home care doctor about dealing with patient s symptoms Family caregivers have insufficient consultation time with home care doctor % n % n % n % n Concerns about visiting nurse (N ¼ 262) Visiting nurses provide % insufficient care for the patient n Poor relationship between visiting nurses and patient Visiting nurses have insufficient knowledge to care for the patient % n % n Overall evaluation of the difficulty Family caregiver feels that % caring for the patient at home was very difficult n a Rate is total of somewhat agree, agree, and completely agree.

7 558 Ishii et al. Vol. 44 No. 4 October 2012 Table 3 Factors Associated With Difficulties Patient s Pain and Condition Burden of Care Balance of Work and Care Concerns about Home Care Service OR [95% CI] OR [95% CI] OR [95% CI] OR [95% CI] Patient s characteristics Age (year) 0.99 [0.95e1.04] 0.99 [0.96e1.03] 0.99 [0.96e1.01] 0.97 a [0.94e1.00] Sex (female/male b ) 0.80 [0.25e2.55] 1.85 [0.68e5.03] 2.16 a [1.07e4.38] 0.87 [0.41e1.87] d d d 0.40 a [0.21e0.79] d d d Family caregiver s characteristics Age (year) 0.69 [0.43e1.09] 0.87 [0.61e1.23] 1.04 [0.83e1.32] 0.82 [0.63e1.08] Sex (female/male b ) 0.41 [0.08e2.09] 2.04 [0.65e6.37] 1.78 [0.80e3.99] 0.33 a [0.13e0.85] Relationship with d d d d d d d d patient (spouse/ not spouse b ) Situation of home care Other caregiver d d d d d d d d (informal caregiver) (presence/ absence b ) Hope of patient for d d d d d d d d death at home (presence/ absence b ) Hope of family d d d d d d d d caregiver for patient s death at home (presence/ absence b ) Number of times d d d d d d d d patient used home-visit nursing care a week before death Place of death (hospital/home b ) d d d d d d 2.33 a [1.13e4.81] a P < b Reference category. c P < was insufficient emotional support and empowerment for family caregivers. Under these circumstances, family caregivers experienced a great sense of difficulty. Furthermore, females generally have a primary role in the household, whereas males generally have social roles, such as work, that are external to the household; therefore, the male family caregiver encounters many difficulties when caring for a patient at home. Difficulties Related to Patient s Pain and Condition During the end-of-life phase for cancer patients, many symptoms, such as fatigue, pain, and dyspnea, occur and palliation of symptoms is difficult. 11 In addition, uncontrollable symptoms cause anxiety for the family caregiver. 9,10 Difficulties related to Patient s pain and condition suggest that this specific domain is relevant for family caregivers who care for a terminal cancer patient at home. This domain did not have related factors according to multivariate logistic regression analysis. This suggests that the domain is associated with the patient s condition, such as the degree of palliation of the symptoms, the number of times of readmission, and so on. Thus, factors cannot be identified from the variables assumed in this study. Because there are greater feelings of difficulty related to the Patient s pain and condition, it is important for home care providers to explain, in advance, about the change in the patient s symptoms and the course of the disease and ways of dealing with the symptoms. Difficulties Related to Burden of Care Burden of care is attributed to the fact that family caregivers handle much of the burden of patient care at home. 13,20,21 In Japan, elder care

8 Vol. 44 No. 4 October 2012 Difficulties in Caring for a Cancer Patient at Home 559 Funeral Preparation Relationship Between Family Caregivers and Their Families Concerns about Home Care Doctor Concerns About Visiting Nurse Comprehensive Evaluation of the Difficulties OR [95% CI] OR [95% CI] OR [95% CI] OR [95% CI] OR [95% CI] 1.02 [0.99e1.06] 1.02 [0.99e1.05] 1.02 [0.97e1.07] 1.04 [0.99e1.09] 1.00 [0.97e1.02] 1.16 [0.58e2.34] 0.85 [0.41e1.78] 2.54 [0.76e8.48] 0.17 a [0.04e0.70] 1.36 [0.66e2.81] d d d d d d d d d 0.63 a [0.43e0.94] 0.81 [0.62e1.07] 1.57 [0.99e2.50] 0.69 [0.43e1.10] 0.78 [0.60e1.01] 0.80 [0.36e1.80] 0.79 [0.32e1.93] 0.78 [0.20e3.09] 0.13 a [0.03e0.63] 0.39 a [0.16e0.98] 4.33 a [1.49e12.59] d d d d d d d d d d 0.40 a [0.21e0.77] d d d d d d 0.40 c [0.22e0.71] d d d d 0.18 c [0.06e0.56] d d d d 0.35 c [0.19e0.66] d d d d 0.42 c [0.22e0.81] d d d d d d 0.45 c [0.22e0.94] d d d d d d 3.48 a [1.22e9.94] 3.31 a [1.01e10.88] d d insurance for cancer is available only to those over 40 years old. Therefore, younger cancer patients cannot use resources, such as visiting nurses, bathing assistance, or borrowing adaptive equipment. This policy increases the family caregiver s burden. Similarly, difficulties related to Concerns about home care service are more common for younger patients. Cancer is characterized by a short duration compared with chronic diseases, such as dementia. Thus, the period of a cancer patient s care is generally also characterized by a short period of care. 18,22 Previous studies surveyed family caregivers of patients with chronic diseases, and findings included that longer periods of care increased the likelihood of difficulties and stress. 23,24 We hypothesized that a short period of home care (median: 38 days) was one of the reasons why Burden of care was not identified in this study. Furthermore, 70% of respondents reported that the patient died at home. From this result, it would appear that family caregivers in this study were likely to feel empowered in their care of the patient. This also may have been the reason why Burden of care was not identified. Home care providers need to recognize when care burden is becoming an issue for family caregivers and offer appropriate services to alleviate it, such as respite care. Difficulties Related to Balance of Work and Care A previous study reported that family caregivers experienced emotional distress in trying to schedule home care for the patient and maintain their own work. 8,20,21,25 It is likely that devoted care of the patient interfered with schedule coordination of the caregiver s employment. A close familial relationship, such as being the spouse, forced the caregiver to become more

9 560 Ishii et al. Vol. 44 No. 4 October 2012 involved in the daily care of the patient. We recommend that home care providers support family caregivers so as to minimize interference with the caregiver s employment. The significance of this study is the clarification of the difficulties that family caregivers encounter in the home care of cancer patients. We believe that this could help home care providers in offering appropriate care not only for patients, but also for their family caregivers in consideration of the reality of the difficulties. Limitations and Challenges of This Study This study has some limitations. First, it was conducted at the regional facilities that offer home care (Yokohama, Japan). Thus, the results of this study might not be generalizable to other settings. Second, recall bias may have occurred because respondents were bereaved family members. We believe, however, that there also are advantages regarding the evaluation of difficulties through studying the total process of home care, including the patient s death. Third, a number of patients died in the hospital. Therefore, the results might not have been representative of all the potential samples to be investigated and should be interpreted with caution. For future research, we consider that more study is needed such as a nationwide survey of the difficulties. Furthermore, we recommend that more study is needed to examine the details of Patient s pain and condition and interventions to alleviate the Burden of care for family caregivers who are actively caring for a terminally ill patient at home. Conclusion In this study, we clarified the difficulties that family caregivers encountered in the home care of terminal cancer patients and the factors associated with the difficulties. More than half of family caregivers had difficulties in their lives related to caring for a terminal cancer patient at home. The presence of the difficulties of Patient s pain and condition, Burden of care, and Balance of work and care accounted for a great percentage. For factors associated with difficulties, greater difficulties were encountered by male caregivers who did not prefer for the patient to die at home. Home care providers must introduce services that will reduce the care burden. Explanation of the patient s symptoms and condition may help to alleviate some of the distress and anxiety that family caregivers experience. Our findings could help home care providers in offering appropriate care not only for patients, but also for their family caregivers. Disclosures and Acknowledgments This study was funded by the Yuumi Memorial Foundation for Home Health Care. The authors declare no conflicts of interest. The authors thank all the participants and the staff of the participating facilities. References 1. Sanjo M, Miyashita M, Morita T, et al. Preferences regarding end-of-life cancer care and associations with good-death concepts: a population-based survey in Japan. Ann Oncol 2007;18:1539e Choi J, Miyashita M, Hirai K, et al. Preference of place for end-of-life cancer care and death among bereaved Japanese families who experienced home hospice care and death of a loved one. Support Care Cancer 2010;18:1445e Ministry of Health, Labour and Welfare. Population survey report on mortality and percentage of cause of death according to place of death Available from List.do?lid¼ Accessed April 20, Grov EK, Dahl AA, Moum T, et al. Anxiety, depression, and quality of life in caregivers of patients with cancer in late palliative phase. Ann Oncol 2005;16:1185e Shinjo T, Morita T, Hirai K, et al. Care for imminently dying cancer patients: family members experiences and recommendations. J Clin Oncol 2010; 28:142e McLaughlin D, Sullivan K, Hasson F, et al. Hospice at home service: the carer s perspective. Support Care Cancer 2007;15:163e Grov EK, Fossa SD, Tonnessen A, et al. The caregiver reaction assessment psychometrics, and temporal stability in primary caregivers of Norwegian cancer patients in late palliative phase. Psychooncology 2006;15:517e Cameron JI, Franche RL, Cheung AM, et al. Lifestyle interference and emotional distress in family caregiver of advanced cancer patients. Cancer 2002;94:521e Brink P, Frise Smith T. Determinants of home death in palliative home care: using the interrai

10 Vol. 44 No. 4 October 2012 Difficulties in Caring for a Cancer Patient at Home 561 palliative care to assess end-of-life care. Am J Hosp Palliat Med 2008;25:263e Bakitas M, Ahles TA, Skalla K, et al. Proxy perspectives regarding end-of-life care for person with cancer. Cancer 2008;112:1854e Ardith Z, Doorenbos CWG, Given B, et al. Symptom experience in the last year of life among individuals with cancer. J Pain Symptom Manage 2006;32:403e Sano T, Maeyama E, Kawa M, et al. Family caregiver s experience in caring for a patient with terminal cancer at home in Japan. Palliat Support Care 2007;5:389e Emanuel EJ, Emanuel LL. The promise of a good death. Lancet 1998;351(Suppl 2):SII21eSII Miyashita M, Sakai M, Iizuka H, et al. Burdens to family members in home care and related QOL factors (in Japanese). J Japanese Association Rural Med 2006;54:767e Hiramatu M, Kondo K, Umehara K, et al. Burdens of family members and related factors in home care (The first report) (in Japanese). J Health Welfare Stat 2006;53:19e Hiramatu M, Kondo K, Umehara K, et al. Burdens of family members and related factors in home care (The second report) (in Japanese). J Health Welfare Stat 2006;53:8e Ishii Y, Miyashita M, Sato K, et al. Family s difficulty scale in end-of-life care: a new measure of the family s difficulties of caring for cancer patients at the end of life at home from bereaved family s perspective. J Palliat Med 2012;15:210e Fukui S, Fukui N, Kawagoe H, et al. Predictors of place of death for Japanese patients with advanced-stage malignant disease in home care settings: a nationwide survey. Cancer 2004;101: 421e Gomes B, Higginson IJ. Factors influencing death at home in terminally ill patients with cancer: systematic review. BMJ 2006;332:515e Mangan PA, Taylor KL, Yabroff KR, et al. Caregiving near the end of life: unmet needs and potential solutions. Palliat Support Care 2003;1:247e Glajchen M. The emerging role and needs of family caregivers in cancer care. J Support Oncol 2004;2:145e Schulz R, Mendelsohn AB, Haley WE, et al. Endof-life care and the effects of bereavement on family caregivers of persons with dementia. N Engl J Med 2003;349:1936e Vedhara K, Shanks N, Anderson S, Lightmen S. The role of stressors and psychosocial variables in the stress process: a study of chronic caregiver stress. Psychosom Med 2000;62:374e DeFries EL, McGuire LC, Andresen EM, et al. Caregivers of older adults with cognitive impairment. Prev Chronic Dis 2009;6:1e Hwang SS, Chang VT, Alejandro Y, et al. Caregiver unmet needs, burden, and satisfaction in symptomatic advanced cancer patients at Veterans Affairs (VA) medical cancer. Palliat Support Care 2003;1:319e329.

11 562 Ishii et al. Vol. 44 No. 4 October 2012 Appendix Family s Difficulty Scale (FDS) for End-of-Life Home Care How did you feel about caring for your terminally ill family member at home one month before he/she died? Please place the appropriate number next to each statement: 1: completely disagree, 2: disagree, 3: somewhat disagree, 4: somewhat agree, 5: agree, 6: completely agree. 1. Patient s Pain and Condition Family caregivers cannot do anything to relieve the patient s suffering. Family caregivers cannot deal with the serious symptoms of the patient. Bitterness due to patient s suffering. Bitterness due to patient s weakness. 2. Burden of Care Family caregivers struggle to provide daily care for the patient. Family caregivers sacrifice for patient-centered life. Family caregivers experience hectic times everyday. Family caregivers become shut-ins because of patient care. Family caregivers experience physical stress during patient s care. Family caregivers get insufficient sleep due to anxiety about the patient. 3. Balance of Work and Care Family caregivers have to give up work to continue the patient s care. Difficulties in managing work and the patient s care because care requires excessive time. Family caregivers have to consider whether they will quit their work because of caregiving. 4. Relationship Between Family Caregivers and Their Families Relatives are divided over the place of care and death of the patient. Family caregivers struggle with the burden of many opinions from relatives. Family caregivers cannot consult with relatives about patient s recuperation. 5. Concerns About Home Care Doctor No explanation from home care doctor about dealing with patient s possible symptoms. Insufficient control of patient s symptoms by home care doctor. Family caregivers cannot express their ideas to home care doctor even though they may have different ideas. Family caregivers have insufficient consultation time with home care doctor. Home care doctors do not visit the patients when they need a home visit. 6. Concerns About Visiting Nurse Visiting nurses provide insufficient care for the patient. Poor relationship between visiting nurses and patient. Visiting nurses have insufficient knowledge to care for the patient. 7. Concerns About Home Care Service Insufficient information on how to correctly use home care services. Family caregivers do not know how to use home care services. High cost of home medical care and services. 8. Funeral Preparations Family caregivers do not know how to arrange the funeral after the patient s death. Family caregivers have trouble making funeral arrangements because preparation time is limited.