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Few studies have investigated appropriate referral timing of specialized palliative care (SPC) from the perspective of cancer patients' and families' experiences. We aimed to clarify appropriate SPC referral timing for patients with advanced cancer and their families. We used data from a nationwide bereaved family survey in Japan. We sent a questionnaire to 999 bereaved families of cancer patients who died in 164 palliative care units (PCUs) and analyzed the first SPC referral timing and how patients evaluated it. We defined SPC as outpatient or inpatient palliative care service comprising certified palliative care physicians, advanced-practice nurses, and multidisciplinary practitioners. Finally, 51.6% (n = 515) of all responses were analyzed. The SPC referral timing was evaluated as appropriate (26.1%), late or too late (20.2%), early or too early (1.2%), or none of these (52.5%). Of these, 32.3% reported that they were referred to an SPC when diagnosed with advanced or incurable cancer or during anti-cancer treatment, and 62.6% reported they were referred after anti-cancer treatment. Patient-perceived appropriateness of SPC referral timing was associated with their good death process. After excluding "none of these" responses, a significantly higher proportion of respondents who reported being referred to SPC at diagnosis and during anti-cancer treatment evaluated the response timing as appropriate, compared to those who reported being referred after anti-cancer treatment. Appropriate timing for SPC referrals relates to quality of death; findings suggest that appropriate timing is at the time of diagnosis or during anti-cancer treatment. [ABSTRACT FROM AUTHOR]

Background: Well detection of the symptoms and signs of dying patients is essential for providing proper palliative care. Our goal is to evaluate the predominant symptoms and compare the changes in dying patients with digestive tract cancer in Japan, South Korea, and Taiwan.Methods: A total of 1057 cancer patients aged 18 years or older admitted in palliative care units with locally advanced or metastatic gastroesophageal, colorectal, and pancreaticobiliary cancer were enrolled from January 2017 to March 2019. The severity of physical and psychological symptoms and signs assessed by physicians and/or nurses upon admission, 1 week after admission, and within 3 days of death, was compared according to cancer type and country of origin.Results: Among the 338 gastroesophageal, 358 pancreaticobiliary, and 361 colorectal cancer patients, 894 (93.1%) died during the observation period. Fatigue was the most severe symptom in all cancer groups before dying. Dyspnea, fatigue, drowsiness, and ascites improved after hospitalization albeit they worsened prior to death. In particular, ascites was a marked symptom in patients with pancreaticobiliary cancer. Delirium and hallucination gradually worsened during the period leading to death. Differences in manifestations with respect to the country of origin were not significant.Conclusion: We identified the most prevalent signs and symptoms in patients from East Asia who were dying from digestive tract cancers. Proper management, based on these prevalent signs and symptoms during the dying period, plays a vital role in providing adequate palliative care. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]