Family caregivers require mental health specialists for end-of-life psychosocial problems at home: a nationwide survey in Japan.

BACKGROUND: Psychological distress is problematic for patients and their family caregivers in the oncological setting. The level of stress is influenced by the health status of the patient and their family members as well as the support system for home care. However, it remains unclear how best to support distressed caregivers providing end-of-life care at home. METHODS: The present study was performed as part of the Japan Hospice and Palliative Care Evaluation study among caregivers whose family members are provided home palliative care. The caregivers were asked whether they wished to receive psychological support from mental health specialists, and factors associated with the need for psychological support were analyzed. RESULTS: Of the 1052 caregivers, 628 completed the questionnaire. As a whole, 169 subjects [27%; 23-30% (95% confidence interval)] reported needing psychological support from a mental health specialist. According to a multiple regression analysis, factors associated with the need for psychological support included (1) emotional distress due to the need to adapt to rapid worsening of the patient's condition [adjusted odds ratio: 2.62 (95% CI 1.77-3.88), p < 0.001], (2) the poor health conditions of the caregivers [2.93 (1.61-5.36), p < 0.001], and (3) having someone else available to care for the patient in place of the caregiver [0.51 (0.34-0.78), p = 0.002]. CONCLUSIONS: Psychological support is required for caregivers tending to patients at home. Further studies are needed to construct a system to provide continuous support to caregivers. Copyright © 2015 John Wiley & Sons, Ltd.

[Talking about home hospices with terminally ill cancer patients -- a multicenter survey of bereaved families].

INTRODUCTION: Communicating with patients is clearly an integral part of physicians' practice, and introducing home hospice care is sometimes a difficult task for oncologists. The primary aims of this study were to clarify family-reported degree of emotional distress and the necessity for improvement in communication when introducing home hospice care, and to identify factors contributing to distress levels. METHODS: A multicenter questionnaire survey was conducted involving 1,052 family members of cancer patients who died at home at 15 home-based hospice services throughout Japan. RESULTS: A total of 616 responses were analyzed(effective response rate of 60%). Fifty-nine percent of the bereaved family members reported that they were distressed or very distressed in receiving information about home hospice care, and 30% reported considerable or much improvement was necessary. There were 6 determinants of family-reported degree of emotional distress and the necessity for improvement: 1 ) Family distress was experienced when the physician stated that the disease progression defeated medicine and nothing could be done for the patient. 2 ) The physicians' explanation did not match with the state of family preparation. 3 ) There was no intimacy between hospital physician and home physician. 4 ) Physicians did not make the atmosphere relaxing enough to allow families to ask questions. 5 ) Nurses did not follow up to generate additional ideas to supplement the physician's statement. 6 ) Family members experienced pressure to make a rash decision. CONCLUSION: In receiving information about transition of home care, a considerable number of families experienced high levels of emotional distress and felt a need for improvement in the communication style. This study proposes 6 strategies to alleviate family distress.

Length of home hospice care, family-perceived timing of referrals, perceived quality of care, and quality of death and dying in terminally ill cancer patients who died at home.

PURPOSE: This study aims to clarify the length of home hospice care, family-perceived timing of referrals, and their effects on the family-perceived quality of care and quality of death and dying of terminally ill cancer patients who died at home and identify the determinants of perceived late referrals. METHODS: A multicenter questionnaire survey was conducted involving 1,052 family members of cancer patients who died at home supported by 15 home-based hospice services throughout Japan. RESULTS: A total of 693 responses were analyzed (effective response rate, 66 %). Patients received home-based hospice care for a median of 35.0 days, and 8.0 % received home hospice care for less than 1 week. While 1.5 % of the families reported the timing of referrals as early, 42 % reported the timing as late or too late. The families of patients with a length of care of less than 4 weeks were more likely to regard the timing of referrals as late or too late. The patients of family members who regarded the timing of referrals as late or too late had a significantly lower perceived quality of care (effect size, 0.18; P = 0.039) and lower quality of death and dying (effect size, 0.15, P = 0.063). Independent determinants of higher likelihoods of perceived late referrals included: frequent visits to emergency departments, patient being unprepared for worsening condition, and patient having concerns about relationship with new doctor. Discharge nurse availability was independently associated with lower likelihoods of perceived late referrals. CONCLUSIONS: A significant number of bereaved families regarded the timing of referrals to home hospices as late, and the perceived timing was associated with the family-perceived quality of care and quality of death and dying. Systematic strategies to overcome the barriers related to perceived late referrals are necessary.