Journal of hospice and palliative care最新文献

Purpose: This study explored nurses' experience of "good nursing care" in the context of caring for terminally ill and end-of-life patients, providing a foundation for improving patient care.

Methods: We employed a qualitative research approach, integrating both inductive and deductive analysis methods. Data collection occurred from May 1 to August 1, 2023, involving nine nurses from intensive care units, hospice and palliative care wards, and nursing homes. All participants had at least two years of experience in caring for terminally ill and end-of-life patients. Data were collected through individual in-depth interviews and analyzed using Colaizzi's six-stage phenomenological method for inductive analysis, and a deductive method based on four taxonomies client domain, client-nurse domain, practice domain, and environment domain.

Results: A total of 172 meaningful statements were derived, with five themes and 57 (33.14%) statements in the client-nurse domain, including three phenomena (contact, communication, and interaction); eight themes and 91 (52.91%) statements in the practice domain, including three phenomena (mentalistic, enactment, and role related phenomenon); and five themes and 24 (13.95%) statements in the environmental domain, including three phenomena (physical, social, and symbolic).

Conclusion: The 18 themes of good nursing care, as conceived and experienced by nurses who cared for terminally ill and end-of-life patients, underscore the importance of attentive nursing care.

Purpose: This study explored the attitudes of lesbian, gay, bisexual, and transgender (LGBT) individuals toward death and their perceptions of hospice and palliative care, as well as their care needs. It also investigated their preferences for alternative decision-making and advance care planning options at the end of life.

Methods: A descriptive survey study was conducted with LGBT adults aged 18 and older. Participants were recruited through LGBT organizations and online communities, and data from 207 respondents were analyzed. Questionnaires were utilized to assess attitudes toward death, perceptions of hospice care, and care needs. Statistical analysis was performed using SPSS 20.0, employing the t-test, ANOVA, and Pearson correlation coefficients.

Results: LGBT individuals generally had low attitudes toward death and negative perceptions of hospice care. Attitudes toward death varied significantly by sex, age, and education, while perceptions of hospice care differed significantly by sexual orientation and education. Care needs in hospice settings also varied significantly by age, gender identity, and education. Most LGBT participants preferred their biological family members (52%) and partners (39%) as surrogate decision-makers. A significant positive correlation was found between perceptions of hospice care and overall care needs.

Conclusion: The findings highlight the need for healthcare services tailored to LGBT individuals' specific needs. It is necessary to promote social understanding, awareness, and policy support to improve the quality of life for LGBT individuals through more inclusive and responsive healthcare services. It also points to the need for healthcare professionals to increase their awareness and understanding of these issues.

Purpose: Hospice and palliative care is a multidisciplinary approach to treatment and care designed to meet the needs of patients and their families at the end of life. Social workers are essential members of the hospice team, but their role is not well understood. The purpose of this study was to explore achievements and barriers in hospice social work practice and to suggest strategies for enhancing the role of social workers.

Methods: The participants were 10 social workers who had worked in hospice institutions for over 5 years and were recruited based on reputational case sampling. Data were collected through two focus group interviews, and were qualitatively analyzed using thematic analysis.

Results: Through the data analysis, two topics (achievements in hospice social work practice, barriers to achievements in hospice social work practice), five categories, 17 subcategories, and 182 concepts were derived.

Conclusion: Based on an in-depth discussion of our key findings, we propose several types of institutional support, including expanding the hospice social work workforce, improving competence through education and supervision, developing professional programs and community resources, and refining methods for measuring achievements.

Korea introduced long-term care insurance on July 1, 2008, to alleviate the burden on families caring for older adults amidst rapid aging and societal changes. Since then, the system has expanded significantly. However, there remains a shortfall in services adequately addressing the nursing, care, health, and medical needs of older adults at the end of life. Therefore, it is essential to reform the long-term care insurance system to enhance service coverage and improve the quality of care for older adults, thereby supporting dignified end-of-life experiences. A phased approach is necessary to integrate end-of-life care into the existing long-term care insurance framework. Several strategies could be considered. First, end-of-life care could be included as a home-based benefit within the long-term care insurance system. Second, introducing an additional fee could be a practical method to incorporate these services into the premiums for long-term care insurance. This approach would make it feasible to extend these benefits to nursing homes. Third, recognizing the significance of end-of-life services and promoting quality improvement could be achieved by incorporating end-of-life needs assessments and related services into the regular evaluations of long-term care facilities.

The objective of this case presentation is to identify factors that hinder home deaths after patients have been compassionately discharged from the hospital. It aims to shed light on modifiable factors that could facilitate a home death. Compassionate discharges differ from routine discharges as they are done to support the wishes of terminally ill patients to pass on at home. The two cases selected for detailed analysis were unique in our cohort; they were the only patients admitted to an inpatient hospice after being compassionately discharged to their homes. This study excluded patients who were readmitted to an acute hospital setting for further treatment trials, as their care objectives had changed. A retrospective analysis of medical notes identified several factors associated with the patient's inability to achieve a desired home death. These included a significant increase in nursing needs compared to the pre-admission status, the substantial psychological burden on families caring for a dying relative at home, and the absence of adaptable and sustainable care plans. Therefore, a successful compassionate discharge requires the provision of caregiver training and psychological support to families both before and after discharge. Moreover, healthcare providers must collaborate with families to develop flexible care plans that are sufficiently robust to manage the unpredictable prognoses of patients.

Advance care planning (ACP) in palliative care is essential for patient autonomy and quality of dying. This review explores ACP practices in South Korea, Japan, and Taiwan, highlighting how legislation and cultural values shape those practices. In these three sectors, which are influenced by Confucian values, family involvement plays a significant role in decision-making. In South Korea, the Life-Sustaining Treatment Decisions Act made ACP processes mandatory at all healthcare institutions and rapidly created advance directive registration agencies nationwide, with a national web-based system for legal documentation. The Act's narrow focus on terminal illness and dying phase may inadvertently delay end-of-life discussions. A broader social consensus is needed to allocate end-of-life care resources in a way that reflects patients' and families' wishes. Japan's family-based approach highlights relational autonomy, with ACP timing varying and no formal legal frameworks for advance directives. Expanded palliative care, ACP guidelines, systemic support, and public awareness drive progress in Japan. Taiwan's two relevant legislative frameworks-the Hospice Palliative Care Act and Patient Right to Autonomy Act-expand palliative care services for terminal illnesses and non-cancer diseases such as severe dementia, irreversible coma, and a persistent vegetative state. Misunderstandings of ACP and family-led decision-making may hinder ACP uptake. ACP referral based on patient care needs rather than terminal diagnoses is suggested. Overcoming common barriers in Asia necessitates open dialogues about death and public education. A standardized legal framework and comprehensive training for healthcare providers are equally important. Further international collaboration will suggest culturally sensitive ACP conversations across Asia.

Nystagmus, characterized by involuntary eye movements, can arise from several causes, with benign paroxysmal positional vertigo being the most prevalent. Additionally, central lesions such as tumors may also induce nystagmus. This case report describes the amelioration of vertical nystagmus in a patient with advanced glioma after treatment with the GABAergic drug baclofen.

Purpose: This study aims to clarify and standardize the terms and concepts associated with end-of-life care, specifically within the contexts of hospice and palliative care.

Methods: We reviewed references pertaining to hospice and palliative care, including definitions of end-of-life care and comfort care. Two meetings were held with members of the medical terminology committee of the Korean Society for Hospice and Palliative Care, along with experts in the field, to establish a consensus on the terms used. In the first round, six experts participated, and in the second round, eight experts engaged in online meetings to brainstorm, exchange opinions, and review and discuss reference materials concerning terms related to hospice and palliative care.

Results: Legal definitions do not always align with those used in clinical medical settings. Although it is challenging to define the period precisely, end-of-life care encompasses all diseases, including age-related infirmities, typically spanning 6 months to 1 year. Hospice care, in contrast, includes certain non-cancerous terminal diseases as well as terminal cancer, covering a period of 3 to 6 months. Comfort care generally refers to the care provided approximately 7 days before death.

Conclusion: A conceptual understanding of terms related to end-of-life care must be reached through cultural and social consensus. Furthermore, end-of-life care should not be limited to cancer but extended to all diseases. In the future, the scope of end-of-life care should expand to encompass care for bereaved families, evolving into a more comprehensive concept of comfort care.

Purpose: This study aimed to investigate advance care planning needs expressed online.

Methods: This study collected data from online community posts and healthcare news sites. The search keywords included "death," "euthanasia," "life-sustaining medical care," "life-sustaining treatment," "advance directives," "advance medical directives," and "advance care planning." Data collection spanned from February 2018 to February 14, 2020. Out of 2,288 posts, 1,190 were included in the final analysis. Data analysis was conducted using NVivo 12, a qualitative data analysis software program.

Results: Content analysis categorized patients' advance care planning needs into eight themes, 11 theme clusters, and 33 meaningful statements. Similarly, care providers' advance care planning needs were categorized into eight themes, 14 theme clusters, and 42 meaningful statements. The identified themes of care needs included life-sustaining medical care, decision-making related to life-sustaining medical care, physical care, environmental care, supportive and spiritual care, respect, preparing for death, and family.

Conclusion: This study identified care needs from the perspectives of patients and their families. The findings may serve as preliminary data for future research and clinical applications.

Palliative care is a comprehensive approach aimed at improving the quality of life for patients and their families. The symptom burden and care needs of patients with end-stage, non-malignant diseases are similar to those experienced by patients with advanced cancer. Therefore, the World Health Organization (WHO) has recommended the expansion of palliative care to encompass a broad spectrum of diseases. However, in Korea, the adoption of palliative care for non-malignant conditions remains markedly low, presenting numerous challenges that differ from those associated with cancer. Key barriers to implementing hospice care for non-malignant diseases include the difficulty in predicting end-of-life and a general lack of awareness about hospice palliative care among healthcare providers, patients, and their families. Additionally, there is a risk that suggesting palliative care to patients with non-malignant diseases might be misinterpreted as an endorsement by healthcare providers to cease treatment or abandon the patient. This article explores strategies to broaden the scope of hospice and palliative care for patients with non-malignant diseases.