Late Referrals to Specialized Palliative Care Service in Japan

2005 ◽  
Vol 23 (12) ◽  
pp. 2637-2644 ◽  
Author(s):  
Tatsuya Morita ◽  
Tatsuo Akechi ◽  
Masayuki Ikenaga ◽  
Yoshiyuki Kizawa ◽  
Hiroyuki Kohara ◽  
...  
Keyword(s):  
Palliative Care ◽  
End Of Life Care ◽  
Response Rate ◽  
Care Service ◽  
Family Members ◽  
Palliative Care Service ◽  
Effective Response ◽  
Specialized Palliative Care ◽  
Palliative Care Units ◽  
Bereaved Family

Purpose To clarify the bereaved family's perceptions about the appropriateness of timing when physicians first referred patients to palliative care units, and to identify the factors contributing to family-perceived late referrals. Subjects and Methods A multicenter questionnaire survey was conducted on 630 bereaved family members of cancer patents who were admitted to palliative care units in Japan. A total of 318 responses were analyzed (effective response rate, 62%). Results Half of the bereaved family members regarded the timing of referrals to palliative care units as late or very late, while less than 5% of families reported early referrals (very late [19%, n = 59], late [30%, n = 96], appropriate [48%, n = 151], early [1.6%, n = 5], and very early [2.2%, n = 7]). Multiple regression analyses revealed that the independent determinants of family-perceived late referrals were: family belief before admission that palliative care shortens the patient's life, insufficient in-advance discussion about preferred end-of-life care between patients/families and physicians, families' insufficient preparation for changes of patient conditions, and hospital admission before referrals. Conclusion In Japan, the timing of referrals to palliative care units was late or very late from the families' perspectives. The independent determinants of family-perceived late referrals were: family misconception about palliative care, inadequate communication with physicians, and families' insufficient preparation for deterioration of patients' conditions. Systematic strategies to overcome these barriers would contribute to providing appropriate palliative care at all stages of cancer.

Why are bereaved family members dissatisfied with specialised inpatient palliative care service? A nationwide qualitative study

2005 ◽  
Vol 19 (4) ◽  
pp. 319-327 ◽  
Author(s):  
Mariko Shiozaki ◽  
Tatsuya Morita ◽  
Kei Hirai ◽  
Yukihiro Sakaguchi ◽  
Satoru Tsuneto ◽  
...  
Keyword(s):  
Palliative Care ◽  
Qualitative Study ◽  
Care Service ◽  
Family Members ◽  
Palliative Care Service ◽  
Bereaved Family

scholarly journals Appropriate Referral Timing To Specialized Palliative Care Service: Survey of Bereaved Families of Cancer Patients Who Died in Palliative Care Units

2021 ◽  
Author(s):  
Keita Tagami ◽  
Kento Masukawa ◽  
Akira Inoue ◽  
Tatsuya Morita ◽  
Yusuke Hiratsuka ◽  
...  
Keyword(s):  
Palliative Care ◽  
Cancer Treatment ◽  
Cancer Patients ◽  
Care Service ◽  
Palliative Care Service ◽  
Death Process ◽  
Incurable Cancer ◽  
Anti Cancer ◽  
Specialized Palliative Care ◽  
Palliative Care Units

Abstract 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%), and 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.

Referral Practices of Oncologists to Specialized Palliative Care

2012 ◽  
Vol 30 (35) ◽  
pp. 4380-4386 ◽  
Author(s):  
Kirsten Wentlandt ◽  
Monika K. Krzyzanowska ◽  
Nadia Swami ◽  
Gary M. Rodin ◽  
Lisa W. Le ◽  
...  
Keyword(s):  
Palliative Care ◽  
Care Service ◽  
Palliative Care Service ◽  
Surgical Oncology ◽  
Disease Course ◽  
Radiation Oncologists ◽  
Canadian Association ◽  
Medical Oncologists ◽  
Referral Practices ◽  
Specialized Palliative Care

Purpose To describe current referral practices of oncologists to specialized palliative care (SPC) and define demographic characteristics, practice situations, and opinions associated with referral. Methods Physician members of the Canadian Association of Medical Oncologists, Canadian Association of Radiation Oncologists, and Canadian Society of Surgical Oncology were invited to participate in an anonymous survey assessing SPC referral practices. Participants received two e-mailed and two mailed invitations. Results The response rate was 72% (603 of 839 physicians); 37% were medical oncologists/hematologists, 50% were radiation oncologists, and 12% were surgical oncologists. Ninety-four percent reported that SPC was available to them, but only 37% reported that these services accepted patients on chemotherapy. Eighty-four percent referred terminally ill patients usually/always, but generally for uncontrolled symptoms or discharge planning late in the disease course. One third would refer to SPC earlier if it was renamed supportive care. Predictors of higher referral frequency included comprehensiveness of available SPC services (P = .004), satisfaction with SPC availability (P < .001), SPC acceptance of patients receiving chemotherapy (P < .001), and oncologist ease with referring patients to a palliative care service before they were close to death (P < .001). Controlling for specialty, predictors of referral at diagnosis or during chemotherapy, rather than later, included satisfaction with SPC service availability (P < .001) and SPC service acceptance of patients on chemotherapy (P < .001). Conclusion Oncologists referred patients frequently to SPC, but generally late in the disease course for patients with uncontrolled symptoms. Availability of comprehensive SPC, especially for patients receiving chemotherapy, and persisting definitional issues seem to be the main barriers preventing timely referral.

The influence of care place and diagnosis on care communication at the end of life: bereaved family members’ perspective

2021 ◽  
pp. 1-8
Author(s):  
Anna O'Sullivan ◽  
Anette Alvariza ◽  
Joakim Öhlén ◽  
Cecilia Larsdotter ex. Håkanson
Keyword(s):  
Decision Making ◽  
Palliative Care ◽  
Nursing Home ◽  
End Of Life ◽  
Family Members ◽  
Palliative Care Unit ◽  
Deceased Person ◽  
Specialized Palliative Care ◽  
Bereaved Family ◽  
At Home

Abstract Objective To investigate the influence of care place and diagnosis on care communication during the last 3 months of life for people with advanced illness, from the bereaved family members’ perspective. Method A retrospective survey design using the VOICES(SF) questionnaire with a sample of 485 bereaved family members (aged: 20−90 years old, 70% women) of people who died in hospital was employed to meet the study aim. Results Of the deceased people, 79.2% had at some point received care at home, provided by general practitioners (GPs) (52%), district nurses (36.7%), or specialized palliative home care (17.9%), 27.4% were cared for in a nursing home and 15.7% in a specialized palliative care unit. The likelihood of bereaved family members reporting that the deceased person was treated with dignity and respect by the staff was lowest in nursing homes (OR: 0.21) and for GPs (OR: 0.37). A cancer diagnosis (OR: 2.36) or if cared for at home (OR: 2.17) increased the likelihood of bereaved family members reporting that the deceased person had been involved in decision making regarding care and less likely if cared for in a specialized palliative care unit (OR: 0.41). The likelihood of reports of unwanted decisions about the care was higher if cared for in a nursing home (OR: 1.85) or if the deceased person had a higher education (OR: 2.40). Significance of results This study confirms previous research about potential inequalities in care at the end of life. The place of care and diagnosis influenced the bereaved family members’ reports on whether the deceased person was treated with respect and dignity and how involved the deceased person was in decision making regarding care.

Aggressiveness of end-of-life care before and after the utilization of a palliative care service.

2011 ◽  
Vol 29 (15_suppl) ◽  
pp. 9135-9135
Author(s):  
W. Gonsalves ◽  
T. Tashi ◽  
T. Davies ◽  
S. Ortman ◽  
R. Thota ◽  
...  
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Care Service ◽  
Palliative Care Service ◽  
Life Care ◽  
Before And After

Association between family satisfaction and caregiver burden in cancer patients receiving outreach palliative care at home

2017 ◽  
Vol 16 (3) ◽  
pp. 260-268 ◽  
Author(s):  
Yoko Naoki ◽  
Yoshinobu Matsuda ◽  
Isseki Maeda ◽  
Hideka Kamino ◽  
Yoko Kozaki ◽  
...  
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Family Caregivers ◽  
Caregiver Burden ◽  
End Of Life Care ◽  
Care Service ◽  
Palliative Care Service ◽  
Family Satisfaction ◽  
Life Care ◽  
Care At Home

ABSTRACTObjective:Little is known about the associations between family satisfaction with end-of-life care and caregiver burden. We conducted a researcher-assisted questionnaire survey to clarify the impact of caregiver burden on family satisfaction and to determine the types of burden that decrease family satisfaction.Method:Bereaved family caregivers of patients with advanced cancer who received our outreach palliative care service were retrospectively identified. Family satisfaction with the end-of-life care provided by the palliative care service and caregiver burden were quantified using the Japanese versions of the FAMCARE Scale and the Zarit Burden Interview (ZBI), respectively.Results:Our study subjects included 23 family caregivers. The mean scores on the FAMCARE Scale and the ZBI for the total population were 72.8 ± 11.2 and 22.8 ± 17.3, respectively, indicating moderate-to-high satisfaction and low-to-moderate burden. Caregiver burden had a strong negative correlation to family satisfaction with end-of-life care (Spearman's rho [ρ] = −0.560, p = 0.005), which remained after adjustment for potential confounders (standardized beta [β] = −0.563, p = 0.01). Several burden items—including loss of control, personal time, social engagement with others, feeling angry with the patient, feeling that the patient wants more help than he/she needs, and a wish to leave the care to someone else—were associated with decreased satisfaction. The major cause of dissatisfaction for family members included the information provided regarding prognosis, family conferences with medical professionals, and the method of involvement of family members in care decisions.Significance of results:Caregiver burden can be a barrier to family satisfaction with end-of-life care at home. A home care model focused on caregiver burden could improve end-of-life experiences for patients and family caregivers.

scholarly journals Patient and family perceptions of hospice services: ‘I knew they weren’t like hospitals’

2013 ◽  
Vol 5 (3) ◽  
pp. 206 ◽  
Author(s):  
Yvonne Bray ◽  
Felicity Goodyear-Smith
Keyword(s):  
Palliative Care ◽  
Ethnic Diversity ◽  
Care Service ◽  
Family Members ◽  
Ethnic Disparities ◽  
Palliative Care Service ◽  
Cultural Groups ◽  
Structured Interviews ◽  
Information Giving ◽  
Family Perceptions

INTRODUCTION: The vision for palliative care service provision in New Zealand is for all people who are dying and their families to have timely access to culturally appropriate, quality palliative care services. An Auckland hospice’s records show that the ethnically diverse population statistics were not reflected in the referrals for hospice services. The aim of this research was to gain a patient-and-their-family perspective on the hospice, including exploration of components of service care that could be improved for various cultural groups. METHODS: Patients currently under the care of the hospice and family members were recruited from hospice records. Semi-structured interviews were conducted to explore the emerging issues. The study collected data from a purposive sample of 18 palliative care patients or carer family members, ranging in age from 39 to 81 years, who reflected the ethnic diversity of the population of the region. Interviewing was carried out by an experienced research assistant and continued until data saturation was reached. FINDINGS: Four key themes emerged – hospice personnel’s approach to patients, quality of service, cultural barriers, and strategies for future improvement. It was determined that the latter two were the most significant to address in this article. CONCLUSION: The study revealed the need for information-giving and education, including public profiling of the hospice to strengthen community involvement. Strategies to reduce ethnic disparities include strengthening the awareness of, and access to, services by connecting with cultural groups through churches, community and specific cultural media. KEYWORDS: Cultural competency; hospice care; palliative care; patient education; terminal care

J-HOPE study: Evaluation of end-of-life cancer care in Japan from the perspective of bereaved family members

2009 ◽  
Vol 27 (15_suppl) ◽  
pp. 9577-9577
Author(s):  
M. Miyashita ◽  
T. Morita ◽  
K. Sato ◽  
S. Tsuneto ◽  
Y. Shima
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Family Members ◽  
Institutional Review Boards ◽  
Life Care ◽  
Knowledge And Skills ◽  
Bereaved Family ◽  
Care Evaluation

9577 Background: The Japan Hospice and Palliative Care Evaluation (J-HOPE) study was conducted in 2007 and 2008. The aim of the study was to evaluate the quality of end-of-life care at regional cancer centers (CCs), inpatient palliative care units (PCUs), and home hospices (HHs) in Japan from the perspective of bereaved family members. Methods: A nationwide cross-sectional mail survey was conducted in 2007 and 2008. The survey was sent to bereaved families 6–18 months after the death of a patient at 56 CCs, 100 PCUs, or 14 HHs. Outcome measures were the good death inventory, the care evaluation scale, and overall satisfaction with care. The protocol of this study was approved by the institutional review boards of each participating institution. Results: Of the 13,181 bereaved family members that received the survey, 8,163 (62%) participants returned their responses. Among bereaved family members, significantly fewer responded that patients were free from physical distress at CCs (50%) than PCUs (80%) and HHs (73%) (P<0.0001). Significantly fewer patients trusted the physicians at CCs (79%) when compared with PCUs (83%) and HHs (88%) (P<0.0001). Significantly fewer patients were valued as people at CCs (83%) than PCUs (93%) and HHs (95%) (P<0.0001). In addition, significantly fewer participants felt physicians should have worked to improve the patients' symptoms more quickly at CCs (55%) when compared with PCUs (78%) and HHs (77%) (P<0.0001). Significantly fewer participants felt nurse should improve their knowledge and skills regarding end-of-life care at CCs (51%) when compared with PCUs (76%) and HHs (78%) (P<0.0001). A total of 51% of participants reported that nurses should improve their knowledge and skills regarding end-of-life care. Finally, significantly fewer participants were satisfied with the end-of-life care provided by CCs (80%) when compared with PCUs (93%) and HHs (94%) (P<0.0001). Conclusions: Overall, the bereaved family members appreciated the end-of-life care provided by CCs, PCUs, and HHs in Japan. However, in some situations, the quality of end-of-life care provided by CCs was lower than that provided by PCUs and HHs. No significant financial relationships to disclose.

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