Journal of palliative medicine
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Background: End-of-life (EOL) care in neonatal intensive care units (NICUs) can vary depending on religious beliefs of health care providers and families as well as the sociocultural environment. Although guidelines exist for EOL care in NICUs, most are based on Western studies, and little is known about such care in Asian countries, which have different religious and social background. Objective: This review synthesized empirical research to reveal the state of the science on infant EOL care in Asian countries. Design: This was an integrative review. Setting/Subjects: Data were collected from studies identified in CINAHL, Embase, PsycINFO, and PubMed. The search was limited to current empirical studies involving infant EOL care in Asian countries and published in English between 2007 and 2016. Results: Of 286 studies initially identified, 11 empirical studies conducted in Hong Kong, India, Israel, Japan, Mongolia, Taiwan, and Turkey were included in the review. ⋯ In most NICUs, health care providers controlled decisions regarding use of life-sustaining treatment, with parents participating in decision making no more than 60% of the time. Although care decisions were gradually changing from "do everything" for patient survival to a more palliative approach, comfort care at the EOL was chosen no more than 63% of the time. Conclusion: While infant EOL care practice and research vary by country, few articles address these matters in Asia. This integrative review characterizes infant EOL care in Asia and explores cultural influences on such care.
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Multicenter Study
Decisional Conflict in Home Medical Care in a Family-Oriented Society: Family Members' Perspectives on Surrogate Decision Making from a Multicenter Cohort Study.
Objective: To identify factors related to decisional conflict among surrogate decision makers for home medical care (HMC) patients. Design: Prospective Cohort Study. Setting/Subjects: For older patients receiving HMC from four different primary care clinics in Japan from January 2016 to June 2017, we studied the family member with the main potential for surrogate decision making. Measurements: At the baseline, surrogates filled out a baseline questionnaire on their characteristics and decision readiness, while the attending doctors provided information about the patients' characteristics. Patient-and-surrogate pairs were tracked for up to six months after the baseline or for three months in the case of death, hospitalization, or admittance to a nursing home. After this tracking, surrogates filled out a follow-up questionnaire on their decision-making experiences, including decisional conflict. Results: Of the original 159 patient-and-surrogate pairs, 121 (76.1%) responded to the follow-up questionnaire. ⋯ Among surrogates who made decisions, the mean score of decisional conflict was 36.2 (standard deviation 14.7), and 43.5% were above the threshold relating to decision delay. Anticipatory guidance and discussion on the patient's care goals at the beginning of HMC were the two variables significantly associated with less decisional conflict of surrogates. Conclusions: Families felt less conflict with surrogate decision making if they had participated in previous discussions with doctors regarding the patients' care goals. Early-stage anticipatory guidance and discussion are a good opportunity for families to prepare for surrogate decision making.
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Randomized Controlled Trial Multicenter Study
Integrating Advance Care Planning Videos into Surgical Oncologic Care: A Randomized Clinical Trial.
Background: Preoperative advance care planning (ACP) may benefit patients undergoing major surgery. Objective: To evaluate feasibility, safety, and early effectiveness of video-based ACP in a surgical population. Design: Randomized controlled trial with two study arms. Setting: Single, academic, inner-city tertiary care hospital. Subjects: Patients undergoing major cancer surgery were recruited from nine surgical clinics. Of 106 consecutive potential participants, 103 were eligible and 92 enrolled. Interventions: In the intervention arm, patients viewed an ACP video developed by patients, surgeons, palliative care clinicians, and other stakeholders. In the control arm, patients viewed an informational video about the hospital's surgical program. Measurements: Primary Outcomes-ACP content and patient-centeredness in patient-surgeon preoperative conversation. ⋯ There were no differences in secondary outcomes other than the intervention video was more helpful (p = 0.007). Conclusions: The ACP video was successfully integrated into surgical care without harm and was thought to be helpful, although video content did not significantly change the ACP content or patient-surgeon communication. Future studies could increase the ACP dose through modifying video content and/or who presents ACP. Trial Registration: clinicaltrials.gov Identifier NCT02489799.
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Background: Little is known about how immigration status influences preference for life-extending care (LEC) at the end of life (EoL). Objective: The purpose was to determine how preference for LEC at the EoL for advanced cancer patients varied by Latino ethnicity and immigrant status, and over time between two large cohorts. Methods: Data were derived from two sequential multi-institutional, longitudinal cohort studies of advanced cancer patients, recruited from 2002 to 2008 (coping with cancer I [CwC-1]) and 2010 to 2015 (coping with cancer II [CwC-2]). ⋯ Conclusions: Immigrant status had a strong effect on preference for LEC at the EoL among the more recent cohort of Latino cancer patients. Preference for LEC appears to have increased significantly over time for LI but remained unchanged for US-L. LI may increasingly want LEC near death.
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Background: Cancer patients with advanced disease are confronted with increasingly complex life-prolonging/symptom-relieving treatment decisions. Being informed of treatment benefits and risks is important, but information provision might be suboptimal. Objective: To assess the extent to which patients with incurable cancer feel informed about benefits and risks of possible treatments, and whether this relates to their self-perceived receipt of person-centered care. Methods: Patients with incurable cancer (N = 212) reported the degree to which they felt informed about treatment benefits/risks. Person-centered care was operationalized as "feeling involved in care" and "feeling that preferences were taken into account". (Logistic) regression analyses assessed the relationship between feeling informed and receiving person-centered care, exploring moderating influences of background characteristics. Results: Two-thirds (66%) of patients felt incompletely informed about treatment benefits/risks. ⋯ Background characteristics did not moderate these relationships, but influenced perceptions of received information and person-centered care. Conclusions: Complete information provision about treatment benefits and risks is, according to patients, not commonplace. Yet such information is related to receiving person-centered care. More research into what specific information is preferred, provided, and remembered is warranted, to achieve optimal person-centered care.