Complexity and function of family involvement in advance care planning: A qualitative study of perspectives from people living with advanced cancer, family members and healthcare professionals.

BACKGROUND: Family members can support advance care planning conversations. However, how family involvement in advance care planning operates to achieve goal-concordant care remains unclear. AIM: To explore how family involvement impacts the process of advance care planning for advanced cancer patients and their family members to achieve goal-concordant care in Japan. DESIGN: Qualitative study incorporating semi-structured in-depth interviews with thematic analysis informed by Family Systems Theory. SETTING/PARTICIPANTS: Medical oncology departments at two tertiary hospitals in Japan. A purposive sample of 13 advanced cancer patients, 10 family members and 9 healthcare professionals who cared for them. RESULTS: Twenty-five interviews were conducted, comprising 7 dyads of patients and their family members and 18 individual interviews. Four themes were identified: characteristics of patients and family members and their views on illness and advance care planning; family context and communication; interactions with healthcare professionals and societal and cultural influences; and family members' acceptance, preparation and confidence. Family involvement was observed as being variable at an individual level and also across generations. Family members provided patients with the instrumental and emotional support that facilitated the advance care planning process. Family involvement enabled family members to better prepare for realising patients' wishes. It increased family members' confidence in surrogate decision-making. CONCLUSIONS: Two mechanisms of how family involvement may enable goal-concordant care were identified: family members' support provision and their preparation for realising patients' wishes. Healthcare professionals should assess family's readiness to engage in advance care planning, and the time required to prepare them for the process.

Family involvement in advance care planning for people living with advanced cancer: A systematic mixed-methods review.

BACKGROUND: Advance care planning is important for people with advanced cancer. Family involvement in advance care planning may be instrumental to achieving goal-concordant care since they frequently become surrogate decision-makers. AIM: To examine components, contexts, effects and linkages with intended outcomes of involving family members in advance care planning. DESIGN: A mixed-methods systematic review, in which quantitative and qualitative data were extracted and synthesised using thematic synthesis leading to a logic model. Prospectively registered on PROSPERO (CRD42020208143). DATA SOURCES: Primary quantitative and qualitative research regarding family-involved advance care planning for people with advanced cancer were identified using Medline, Embase, PsycINFO and CINAHL from inception to September 2020. Quality appraisal was performed with 'QualSyst'. RESULTS: Fourteen articles were included. The synthesis identified perceptions of individuals and family members concerning family involvement in advance care planning and presents components for family-integrated advance care planning intervention. The logic model includes (i) addressing family members' concerns and emotions and (ii) facilitating communication between individuals and family members which are distinctive when healthcare professionals engage with individuals as well as family members. CONCLUSIONS: This review provides a comprehensive understanding of family involvement in advance care planning and could inform its assessment and implementation in clinical practice. The number of included articles was limited. Therefore future research must focus on family integration and exploration of stakeholders' perceptions to identify additional components and linkages between them within family-integrated advance care planning.

Real-world experience implementing Advance Care Planning in the Asia-Pacific: ACP in Japan.

Promoting Advance Care Planning (ACP) in the super-aged society of Japan has become increasingly important for supporting older adults to continue to live in the community until the end of life. To promote ACP further in Japan, Japanese family-centered decision-making and high-context culture need to be taken into account. Therefore, we describe the environmental and historical backgrounds surrounding ACP in Japan, and based on the results, introduce research and education programs regarding its implementation.

Validity and Reliability of the Dying Care Process and Outcome Scales Before and After Death From the Bereaved Family Members' Perspective.

OBJECTIVE:: There are no instruments evaluating the processes and outcomes of dying care right before and after death. Therefore, we developed and examined the validity and reliability of 2 scales for evaluating dying care processes and outcomes before and after death. METHODS:: A cross-sectional, anonymous questionnaire was administered to bereaved family members of patients with cancer who had died in 5 facilities. We evaluated the Dying Care Process Scale for Bereaved Family Members (DPS-B) and the Dying Care Outcome Scale for Bereaved Family Members (DOS-B) with 345 bereaved family members. RESULTS:: A factor analysis revealed that DPS-B and DOS-B each consisted of 4 subscales. For the DPS-B, they were "symptom management," "respect for the patient's dignity before and after death," "explanation to the family," and "family care." For the DOS-B, they were "peaceful dying process for the patient," "being respected as a person before and after death," "good relationship between the patient and family," and "peaceful dying process for the family." Both DPS-B and DOS-B had sufficient convergent and discriminative validity, sufficient internal consistency (DPS-B: α = 0.91 and subscales' αs = 0.78-0.91; DOS-B: α = 0.91 and subscales' αs = 0.78-0.94), and sufficient test-retest reliability (DPS-B: intraclass correlation coefficient [ICC] of total score = 0.79 and subscales = 0.55-0.79; DOS-B: ICC of total score = 0.88 and subscales = 0.70-0.88). SIGNIFICANCE OF RESULTS:: Both DPS-B and DOS-B are valid and reliable scales for evaluating the dying care processes and outcomes before and after death from the bereaved family members' perspectives.

Development and Validity of the Nursing Care Scale and Nurse's Difficulty Scale in Caring for Dying Patients With Cancer and Their Families in General Hospitals in Japan.

This study develops and examines the validity and reliability of 2 scales, respectively, for evaluating nursing care and the experience of difficulties providing nursing care for dying patients with cancer and their families. A cross-sectional anonymous questionnaire was administered to nursing staff caring for dying patients with cancer and their families in 4 general hospitals and a university hospital in Japan. The instruments assessed were the Nursing Care Scale for Dying Patients and Their Families (NCD) and the Nurse's Difficulty Scale for Dying Patients and Their Families (NDD). Of the 497 questionnaires sent to nurses, 401 responses (80%) were analyzed. Factor analyses revealed that the NCD and NDD consisted of 12 items with 4 subscales: "symptom management," "reassessment of current treatment and nursing care," "explanation to family," and "respect for the patient and family's dignity before and after death." These scales had sufficient convergent and discriminative validity, sufficient internal consistency (α of subscales: NCD, 0.71-0.87; NDD, 0.74-0.93), and sufficient test-retest reliability (intraclass correlation coefficient of subscales: NCD, 0.59-0.81; NDD, 0.67-0.82) to be used as self-assessments and evaluation tools in education programs to improve the quality of nursing care for the dying patients and their families.

Which Research Questions Are Important for the Bereaved Families of Palliative Care Cancer Patients? A Nationwide Survey.

CONTEXT: Bereaved family members are present from diagnosis to the end of life and can look back and evaluate the experience; in addition, the family itself is also an important subject in the care of the patient. Therefore, although it is essential to determine the priority research issues from the viewpoint of the patients and health care workers, it is also crucial to know the important research themes from the viewpoint of the bereaved family members. OBJECTIVES: The purpose of this study was to identify research priorities for palliative care in Japan, based on the viewpoint of bereaved family members. METHODS/DESIGN: We conducted a cross-sectional, self-report questionnaire survey. Content analysis was performed on free-text answers for research priorities. This study was carried out as part of the third Japan HOspice and Palliative Care Evaluation (J-HOPE3) study. RESULTS: We extracted 1658 codes from the transcripts and organized them into 120 subcategories on the basis of similarity. Subcategories were then organized into eight categories as follows: ; ; ; ; ; ; ; and . CONCLUSION: The findings of this study can be used as a research agenda for palliative care, which should take first priority in the future, and could be carried out using limited resources.

Decision Making Regarding the Place of End-of-Life Cancer Care: The Burden on Bereaved Families and Related Factors.

CONTEXT: Decision making regarding the place of end-of-life (EOL) care is an important issue for patients with terminal cancer and their families. It often requires surrogate decision making, which can be a burden on families. OBJECTIVES: To explore the burden on the family of patients dying from cancer related to the decisions they made about the place of EOL care and investigate the factors affecting this burden. METHODS: This was a cross-sectional mail survey using a self-administered questionnaire. Participants were 700 bereaved family members of patients with cancer from 133 palliative care units in Japan. The questionnaire covered decisional burdens, depression, grief, and the decision-making process. RESULTS: Participants experienced emotional pressure as the highest burden. Participants with a high decisional burden reported significantly higher scores for depression and grief (both P < 0.001). Multiple regression analyses revealed that higher burden was associated with selecting a place of EOL care that differed from that desired by participants (P < 0.001) and patients (P = 0.034), decision making without knowing the patient's wishes and values (P < 0.001) and without participants sharing their wishes and values with the patient's doctors and/or nurses (P = 0.022), and making the decision because of a due date for discharge from a former facility or hospital (P = 0.005). CONCLUSION: Decision making regarding the place of EOL care was recalled as burdensome for family decision makers. An early decision-making process that incorporates sharing patients' and family members' values that are relevant to the desired place of EOL care is important.

How to Manage Hospital-Based Palliative Care Teams Without Full-Time Palliative Care Physicians in Designated Cancer Care Hospitals: A Qualitative Study.

OBJECTIVE: To clarify how highly active hospital palliative care teams can provide efficient and effective care regardless of the lack of full-time palliative care physicians. METHODS: Semistructured focus group interviews were conducted, and content analysis was performed. RESULTS: A total of 7 physicians and 6 nurses participated. We extracted 209 codes from the transcripts and organized them into 3 themes and 21 categories, which were classified as follows: (1) tips for managing palliative care teams efficiently and effectively (7 categories); (2) ways of acquiring specialist palliative care expertise (9 categories); and (3) ways of treating symptoms that are difficult to alleviate (5 categories). CONCLUSIONS: The findings of this study can be used as a nautical chart of hospital-based palliative care team (HPCT) without full-time PC physician. Full-time nurses who have high management and coordination abilities play a central role in resource-limited HPCTs.