Chronic cardiovascular and pulmonary diseases are prevalent in the US home health population. Heart failure and chronic obstructive pulmonary disease are both chronic and terminal, but they are not always perceived as serious illnesses with imminent death. Therefore, they provide a context for advance care planning that is distinct from the diagnostic contexts of cancer, end-stage renal disease, or dementia. Advance care planning is defined as a process that supports adults at any age or stage of health in understanding and sharing their goals, values, and preferences about future medical care, including the designation of a surrogate decision-maker. This study tests the hypothesis that US home health agencies with higher percentages of patients with chronic cardiovascular and pulmonary conditions have less robust advance care planning protocols. The Spearman correlation coefficient was r = 0.22 (S = 74684, P =.025, 1-tailed), which was statistically significant and an unexpected finding. The greater percentage of patients with chronic cardiac and pulmonary diagnoses in an agency, the more robust the advance care planning protocol was. This supports our previous findings and existing literature indicating that agencies may be using exacerbation events marked by acute care use as opportunities to initiate or repeat advance care planning.

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No description available.

Yes / The uptake of advance care planning (ACP) is particularly low among people with dementia. This may reflect barriers to communication between professionals, patients and families in the face of lack of consensus about the process. This study aimed to methodically investigate consensus views of how ACP should be explained and carried out with people with dementia. A three-round Delphi study explored views of how and when ACP should be addressed, what should be covered, who should be involved and why rates of ACP are low. Seventeen participants took part comprising family members, old age psychiatrists and policy makers. Thirty-two items reached consensus. The panel agreed on 11 different areas for discussion. They concurred that ACP was best addressed after the person has come to terms with the diagnosis when the individual feels ready to do so. There was a consensus view that the process should be couched in terms of ‘certain possibilities’. Consensus items emphasised personal choice and autonomy, while also prioritising the need to discuss financial aspects and to include spouses. There was no consensus that professionals should be involved, although the panel viewed them as carrying some responsibility for low uptake. It is suggested that ACP should include general discussion of values as well as coverage of specific points. Professionals need to offer discussion and information on ACP, but also make clear that the patient has the right to choose whether to pursue ACP or not.

Yes / perinatal palliative care services are increasingly available globally, offering a range of clinical and psychological support services to families during pregnancy, in the neonatal period and following the death of a baby with a life-limiting or life-threatening condition. Little is understood about the role of children’s hospice care and how it contributes to effective perinatal palliative care. Design: The study aims to answer the question ‘what is the role of children’s hospices in the provision of perinatal palliative care and advance care planning in the United Kingdom?’ Methods: An electronic survey was sent to all 54 children’s hospices in the United Kingdom between May and June 2022. Results: 30 hospices responded, representing 54% of the sector. All regions of all four counties are represented. Numbers of referrals to hospices for perinatal palliative care have increased significantly over the last five years. Hospices provide a range of services for families and babies, usually from the point of diagnosis or recognition of a life-limiting or life-threatening condition, underpinned with counselling and emotional support. Hospices worked with a range of professionals and services, most commonly fetal medicine and neonatal services. Advance care plans were an important element of effective perinatal palliative care, strengthening parent-professional and interprofessional relationships. Conclusion: Children’s hospice services play an important and growing role in the perinatal care of babies and families following the diagnosis or recognition of a life limiting or life-threatening condition. The family centred approach to care, from a broad, biopsychosocial perspective means that hospices make a unique and meaningful contribution to both the clinical and psychological needs of families. / University of Bradford. Grant Number: DA5151. SURE Research Project

The course of endstage renal disease (ESRD) and receiving hemodialysis (HD) treatment is complex and filled with uncertainty. Part of this illness experience includes making end-of-life (EOL) care decisions. Many families are unprepared to make such decisions. Advance care planning (ACP) creates an excellent context for laying the groundwork for these emotionally charged conversations. Hemodialysis patients, their families and healthcare providers (HCPs) are in a unique position to begin the ACP process early in the illness trajectory, revisiting it when the patient’s health status, prognosis and treatment modality changes. To date, little research has focused directly on how families experience ACP conversations in the context of ESRD or HD. The purpose of this study was to explore family members’ experiences of participating in a facilitated ACP conversation with the HD patient. This approach recognizes and privileges the family’s role in the illness trajectory of ESRD and validates that they too are HCPs’ clients. Five families, consisting of the HD patient and one family member, who went through the ACP process were interviewed along with an ACP facilitator from the nephrology program. This focused ethnographic study applied the theoretical perspective of postmodernist critical theory to derive and analyze data from in-depth semi-structured interviews. Findings revealed a detailed description of the ACP process that included timing, readiness to acknowledge the potentiality of death, facing mortality, and finding meaning in the illness experience. As families started to deconstruct their experiences, they shared stories of communication breakdown, highlighting the complexities of their relationships with HCPs. Understanding the factors that potentially contribute to HD patients’, their families’ and the renal staff’s discomfort with death were analyzed. The study findings provide important direction for HCPs about how families make ACP decisions, how they perceive the ACP process, and what they identify as their EOL care needs and wishes. Failure to implement ACP as part of an EOL care program means that death will continue to be denied and clients’ EOL care needs will remain un-addressed. In order for ACP to be effective on HD units, sustainable resources are essential for patients, their families and HCPs.

The course of endstage renal disease (ESRD) and receiving hemodialysis (HD) treatment is complex and filled with uncertainty. Part of this illness experience includes making end-of-life (EOL) care decisions. Many families are unprepared to make such decisions. Advance care planning (ACP) creates an excellent context for laying the groundwork for these emotionally charged conversations. Hemodialysis patients, their families and healthcare providers (HCPs) are in a unique position to begin the ACP process early in the illness trajectory, revisiting it when the patient’s health status, prognosis and treatment modality changes. To date, little research has focused directly on how families experience ACP conversations in the context of ESRD or HD. The purpose of this study was to explore family members’ experiences of participating in a facilitated ACP conversation with the HD patient. This approach recognizes and privileges the family’s role in the illness trajectory of ESRD and validates that they too are HCPs’ clients. Five families, consisting of the HD patient and one family member, who went through the ACP process were interviewed along with an ACP facilitator from the nephrology program. This focused ethnographic study applied the theoretical perspective of postmodernist critical theory to derive and analyze data from in-depth semi-structured interviews. Findings revealed a detailed description of the ACP process that included timing, readiness to acknowledge the potentiality of death, facing mortality, and finding meaning in the illness experience. As families started to deconstruct their experiences, they shared stories of communication breakdown, highlighting the complexities of their relationships with HCPs. Understanding the factors that potentially contribute to HD patients’, their families’ and the renal staff’s discomfort with death were analyzed. The study findings provide important direction for HCPs about how families make ACP decisions, how they perceive the ACP process, and what they identify as their EOL care needs and wishes. Failure to implement ACP as part of an EOL care program means that death will continue to be denied and clients’ EOL care needs will remain un-addressed. In order for ACP to be effective on HD units, sustainable resources are essential for patients, their families and HCPs.

The course of endstage renal disease (ESRD) and receiving hemodialysis (HD) treatment is complex and filled with uncertainty. Part of this illness experience includes making end-of-life (EOL) care decisions. Many families are unprepared to make such decisions. Advance care planning (ACP) creates an excellent context for laying the groundwork for these emotionally charged conversations. Hemodialysis patients, their families and healthcare providers (HCPs) are in a unique position to begin the ACP process early in the illness trajectory, revisiting it when the patient’s health status, prognosis and treatment modality changes. To date, little research has focused directly on how families experience ACP conversations in the context of ESRD or HD. The purpose of this study was to explore family members’ experiences of participating in a facilitated ACP conversation with the HD patient. This approach recognizes and privileges the family’s role in the illness trajectory of ESRD and validates that they too are HCPs’ clients. Five families, consisting of the HD patient and one family member, who went through the ACP process were interviewed along with an ACP facilitator from the nephrology program. This focused ethnographic study applied the theoretical perspective of postmodernist critical theory to derive and analyze data from in-depth semi-structured interviews. Findings revealed a detailed description of the ACP process that included timing, readiness to acknowledge the potentiality of death, facing mortality, and finding meaning in the illness experience. As families started to deconstruct their experiences, they shared stories of communication breakdown, highlighting the complexities of their relationships with HCPs. Understanding the factors that potentially contribute to HD patients’, their families’ and the renal staff’s discomfort with death were analyzed. The study findings provide important direction for HCPs about how families make ACP decisions, how they perceive the ACP process, and what they identify as their EOL care needs and wishes. Failure to implement ACP as part of an EOL care program means that death will continue to be denied and clients’ EOL care needs will remain un-addressed. In order for ACP to be effective on HD units, sustainable resources are essential for patients, their families and HCPs. / Applied Science, Faculty of / Nursing, School of / Graduate

abstract: This study aimed to understand the factors that influence Chinese American older adults’ advance care planning (ACP) on end-of-life care. The Theory of Planned Behavior (TPB) and Health Belief Model (HBM) were primarily applied to explain Chinese American older adults’ intentions toward two behaviors: 1) discussion of end-of-life care plans with family members and 2) completion of an advance directive (AD). Additionally, acculturation and family cohesion were considered to examine their impacts on the TPB and HBM. A cross-sectional survey was conducted through face-to-face interviews on a sample of 298 community-dwelling Chinese-American adults aged 55 and older living in the metropolitan Phoenix area of Arizona. Based upon random assignment, 161 participants answered questions regarding discussing end-of-life care plans with family members, while 137 participants answered questions related to the completion of an AD. Hierarchical multiple regression analysis was used to focus on the influence of TPB and HBM measures on behavioral intentions toward the two behaviors. Results indicated that both the TPB and HBM had predictive power to explain the target population’s intentions. However, the predictability of TPB and HBM measures varied across the two behaviors. Acculturation moderated the relationship between attitudes and intentions to complete an AD negatively. Family cohesion moderated the relationship between perceived benefits and intentions to discuss end-of-life care plans with family members negatively. These findings would help inform future interventions for improving the target population’s ACP awareness and engagement. / Dissertation/Thesis / Doctoral Dissertation Communication 2018

京都大学 / 0048 / 新制・論文博士 / 博士(医学) / 乙第13327号 / 論医博第2195号 / 新制||医||1044(附属図書館) / 京都大学大学院医学研究科医学専攻 / (主査)教授 古川 壽亮, 教授 伊達 洋至, 教授 佐藤 俊哉 / 学位規則第4条第2項該当 / Doctor of Medical Science / Kyoto University / DFAM