Journal of Hospice & Palliative Nursing最新文献

Neurodegenerative disorders affect over 6 million people in the United States. A subset of these patients experiences symptoms that progress rapidly, along with a 5- to 10-year life expectancy (amyotrophic lateral sclerosis). This subgroup often becomes dependent on family caregivers. Managing care demands at the end of life that are brought on by rapid disease progression has a negative impact on caregiver quality of life. The purpose of this integrative review is to highlight the gaps in the existing body of research on the effect of neuropalliative care on quality of life of this caregiver population. A total of 13 articles met inclusion criteria and were selected for review. The most frequently occurring themes and findings in the literature shed light on neuropalliative care and provided some insight into both caregivers and patients' perspective at the end of life. What sets this population apart from caregivers and patients of other terminal diseases is the nature of disease progression and the rapid life adjustments that come along with it. Integration of neuropalliative has shown to provide additional support for caregivers and patients; however, it remains underused. To promote equitable access to these services, it is necessary to address several structural barriers.

Demographic shifts toward an older and sicker prison population present challenges for corrections leaders and incarcerated people. The priority of custody and control over care in prisons can deprive people of a modicum of autonomy even about expressing their end-of-life wishes. This study was undertaken to inform best practices and identify essential components of end-of-life care planning (EOLCP) for people who will likely die incarcerated. Individual interviews with formerly incarcerated people (n = 16) provided insights on EOLCP knowledge, perceptions, and future plans as each reflected on experiences while incarcerated. Zoom Video Communications were used for the interviews, and audio recordings were transcribed verbatim, verified, and deidentified prior to thematic analysis. Themes were defined and discussed until consensus was reached between the 2 researchers. End-of-life care planning themes included the following: understanding of and experience with advanced directives/care planning (AD/ACP), defining AD/ACP, timing of AD/ACP accessibility to health care resources, how to approach EOLCP in prison, advantages of EOLCP, and barriers to EOLCP. Formerly incarcerated peoples' knowledge, perceptions, and future plans revealed important considerations when developing a contextually relevant toolkit for EOLCP for people living in prison.

Advance care planning is important and timely for patients receiving home health services; however, opportunities to facilitate awareness and engagement in this setting are often missed. This qualitative descriptive study elicited perspectives of home health nurses and social workers regarding barriers and facilitators to creating advance care plans in home health settings, with particular attention to patients with few familial or social contacts who can serve as surrogate decision-makers. We interviewed 15 clinicians employed in a large New York City-based home care agency in 2021-2022. Participants reported a multitude of barriers to supporting patients with advance care planning at the provider level (eg, lack of time and professional education, deferment, discomfort), patient level (lack of knowledge, mistrust, inadequate support, deferment, language barriers), and system level (eg, discontinuity of care, variations in advance care planning documents, legal concerns, lack of institutional protocols and centralized information). Participants noted that greater socialization and connection to existing educational resources regarding the intended purpose, scope, and applicability of advance directives could benefit home care patients.

Palliative care is traditionally delivered by specialty-trained palliative care teams. Because of a national workforce shortage of palliative care specialists, there is an urgent need to explore alternative models of palliative care delivery to meet the needs of patients living with serious illness. As part of a multisite randomized controlled trial, 2 registered nurses without previous palliative care experience were trained to deliver a primary palliative care intervention to patients with newly diagnosed lung cancer. The intervention focused on assessing and managing symptoms, psychosocial needs, education, and initiating goals-of-care discussions. The primary outcome, improved symptom burden and quality of life, was not statistically significant. Despite this finding, nurses addressed 5 of the 8 National Consensus Project Guidelines domains of quality palliative care: structure and processes of care; physical, psychological, and social aspects of care; and ethical and legal aspects. Patients' engagement in goals-of-care discussions, a measure of high-quality palliative care, increased. Clinical recommendations offered by the nurses to the patients' clinicians were addressed and accepted on a timely basis. Most patients rated satisfaction with the intervention as "very or extremely" satisfied. These findings may inform future nurse-led palliative care interventions on the specific quality domains of palliative care.

Truth-telling and life-sustaining treatment decisions are important elements of the quality of patients' care at the end of life. As the primary caregivers of patients at the end of life in intensive care units (ICUs), ICU nurses play an important role in patient decision making and hospice care. This study aimed to investigate and analyze ICU nurses' attitudes toward truth-telling, attitudes toward end-of-life life-sustaining treatment, and end-of-life decision-making behavioral intentions. One hundred twenty-two ICU nurses participated in this cross-sectional survey. Data were collected using a validated questionnaire. The results showed that ICU nurses' attitudes toward telling patients the truth and end-of-life life-sustaining treatment were both positive, but further improvement is needed. Nurses have a higher willingness to make palliative care decisions for patients at the end of life and to help patients achieve a good death. The truth-telling attitude, the life-sustaining treatment attitude, and whether they knew that cardiopulmonary resuscitation could be legally forgone at the end of life were factors influencing ICU nurses' behavioral intention toward decision making for patients at the end of life (all P s < .05). We conclude that nurses' participation in truth-telling and end-of-life decision making should be promoted, and timely hospice care should be provided to patients to help them achieve a good death.

The untimely death of a child is an incredibly traumatic experience for parents and their loved ones. It uproots every aspect of their life, leading the bereaved parents to be far more likely to have poorer physical and mental health outcomes. This traumatic form of bereavement should have comprehensive grief-focused, high-quality interventions available for parents and extended family members. The purpose of this rapid review was to explore and describe the bereavement interventions available for parents and family that have been published within the past 5 years. Records identified 123 full-text articles that were reviewed, and 14 of those were included for data extraction and synthesis, using Cochrane Rapid Reviews Methods Group with the addition of keyword searches. The 14 articles were analyzed by evaluating description of bereaved parents, accessibility of interventions, who delivered interventions, and the type and delivery time of interventions. Four types of interventions were identified, including Web-based, community-based, hospital-based, and psychotherapy interventions. This rapid review has implications for clinical practice, research, and health care policy that can increase the availability of support and quality of interventions for bereaved parents and family members.

Health care for the homeless population is a complex challenge and represents a significant gap in care, particularly for those at the end of life. Hospice care may be desired but is rarely an option for people without residences, social support, and payment sources. Social model hospice is a unique paradigm of care delivery that offers a viable solution to make hospice and palliative care possible for this population. In this historical report from interviews with early organizers, prior and current leadership (n = 6), the evolution of The INN Between in Salt Lake City, Utah, is described. In 2010, The INN Between was conceptualized as a nonprofit community effort addressing this need to provide an alternative to people dying unsheltered. After 5 years of planning, it opened in 2015 and has grown to become a comprehensive community resource for homeless medically frail and terminally ill individuals. Recommendations for establishing social model hospices are made: key strategies include identifying stakeholders dedicated to alleviating end-of-life homelessness needs, doing a formal needs assessment to identify community resource deficits, and forming mentoring relationships with established programs. Social model hospice is a viable way of meeting the end-of-life needs of many communities' most vulnerable residents.

This article focused on the experiences of women who underwent medical termination of their pregnancies. The study adopted a qualitative phenomenological research design with a sample of 20 pregnant women. Data were collected between April and June 2022 using a personal information form and a semistructured individual interview. The qualitative data were analyzed into 4 categories: "psychosocial impacts," "impacts on functionality," "coping," and "expectations." These categories comprised 8 themes and 24 subthemes. Nurses play a crucial role in adopting family-centered approaches to offer holistic care. They should prioritize providing physical care throughout the medical termination, while also assessing the psychological impact of fetal loss. Perinatal palliative care and bereavement counseling should be integrated into care practices.

There is a dearth of information on the role of the pediatric palliative advanced practice registered nurse (APRN) reported in the literature, and yet, the role is expanding. Advances in technology and health care are helping children with medical complexity live longer, and the demand for pediatric palliative care is growing. As programs expand to meet this need, there are new opportunities for pediatric palliative APRNs to practice outside acute care consultative models, within large children's hospitals. The aim of this article was to describe the expanding role of the pediatric palliative APRN using a progressive case study that describes how these expanding roles can collaborate using evidence-based practice and expert consensus to define their roles. If pediatric palliative APRNs hesitate to define their practice, others will define it for them.

Pediatric palliative care was introduced in South Korea in 2018, with an increased need for care of children with life-limiting conditions, such as leukemia. However, the perspective of parents, who are the primary caregivers, regarding pediatric palliative care has not been explored. This study aimed to describe the pediatric palliative care-related experiences of parents who had lost a child to leukemia to better understand their needs and care outcomes. Ten mothers of children who received pediatric palliative care were recruited. Individual in-depth interviews were conducted. Phenomenology was applied to elucidate parents' experiences during their children's illness and after bereavement. From 179 main statements and 46 meaningful units, 22 themes were derived and grouped into 11 theme clusters and 4 categories. The participants described that the pediatric palliative care team had an indispensable role in providing emotional support to them and their children; this support continued even after the child's death. In addition, the participants were satisfied with their choice to receive pediatric palliative care and hoped that more regions could benefit from the services. The study findings could contribute to advances and the popularization of pediatric palliative care in South Korea.