Factors Influencing the Knowledge and Attitudes of Hospice Care Practitioners in Guangxi, China: A Cross-Sectional Study.

Purpose: Practitioners in China who implement hospice care services include doctors, nurses, and care workers. These individuals play an important role in the holistic care of patients at the end of life and their families. This study aimed to provide baseline data to develop hospice care services and improve relevant policies by investigating the knowledge and attitudes of hospice care practitioners (HCPs) and analyzing influencing factors. Methods: This cross-sectional descriptive study used stratified sampling and quota sampling. The HCPs were from nursing homes, medical institutions, integrated medical and nursing institutions, and community health service centers in Guangxi Zhuang Autonomous Region. We examined HCPs' demographic characteristics and scores on a self-designed Chinese scale to measure their knowledge and attitudes(K&A scale). A total of 1821 HCPs completed surveys from May 2022 to July 2022. The data were analyzed using descriptive statistics, univariate analysis and multiple linear regression. Results: The standard score of the K&A scale of 1821 HCPs was 61.62 (SD=9.78), and the individual mean scores of knowledge and attitudes were 76.42 (SD=28.13) and 58.69 (SD=11.31), respectively. The final multiple linear regression analysis indicated that the main factors that influenced the K&A score were monthly income, job satisfaction, and the hospice care-related system (HCS). Conclusion: The HCPs in this study displayed moderate mean scores for knowledge and a less favorable attitude toward hospice care. Monthly income, job satisfaction and the HCS were the common factors that influenced HCPs' K&A. The results suggest the need to strengthen targeted and professional training for HCPs, increase their welfare and benefits, and improve indigenous policies of hospice care.

Impact of Spiritual End-of-Life Support on the Quality of Life for Leukemia Patients.

Objective: Patients with leukemia suffer from significant psychological, spiritual, and social symptoms. Therefore, the current research aimed to study the impact of spiritual end-of-life support on the quality of life for leukemia patients. Method : To this end, the present quasi-experimental research with a pre-test and post-test design was performed. The sample included 60 cancer patients randomly assigned to intervention and control groups through the method of permutation block. The experimental group received spiritual support intervention for eight sessions of 60 minutes, while the control group received no intervention. Patients filled out the questionnaire of World Health Organization Quality of Life. The World Health Organization conducts a three-phase assessment to measure the quality of life. These phases include a pre-test, which is conducted before any intervention takes place. Then comes the post-test, which occurs after the intervention. Finally, there is a follow-up assessment conducted two months after the post-test. The obtained results were analyzed by repeated-measures analysis and independent samples t-test using SPSS software. Results: The findings from the repeated measures analysis revealed that there was a statistically significant interaction between time and group (P = 0.01). In other words, being compared to the control group, the spiritual support significantly increased the life quality of the patients in the experimental group. The experimental group witnessed a sustained enhancement in the quality of life for a period of two months following the intervention (follow-up, P = 0.01). Conclusion: Ultimately, the provision of spiritual support has the potential to enhance the overall well-being of individuals approaching the end of their lives, offering solace and aiding them in comprehending the true essence and purpose of their existence.

Palliative medicine specialist and general practitioner interactions: national survey.

OBJECTIVES: The purpose of the study was to investigate the collaboration between primary care and palliative care physicians, which is key to providing comprehensive care, and to identify potential difficulties and needs in referring patients to palliative care. METHODS: The study was conducted as an online survey, available to primary care and palliative care physicians. The data collected during the survey were used to compare perceptions of different specialty physicians' perspectives on various aspects regarding palliative care. RESULTS: The results of the study showed significant differences in the assessment of the palliative care services availability (73% of primary care physicians rate it poorly comparing to high rating of 60% by palliative care specialists), as well as disparities between the declarations regarding the criteria used to decide on referral to palliative care (achieving the best quality of life) and the actual referral of patients (primary care physicians are third on the list of specialists referring patients to palliative care). Despite the need for adequate cooperation between family physicians and palliative care physicians, some difficulties were identified, such as primary care physicians' lack of knowledge of the patient palliative care referral criteria, and financial as well as personnel and palliative care facilities' limitations, were identified. CONCLUSIONS: The study confirms the need for better cooperation between primary care physicians and palliative care specialists in Poland. It suggests that educating primary care physicians about palliative care referral criteria can improve the patient referrals accuracy.

How clinicians recognise people who are dying: An integrative review.

BACKGROUND: Timely recognition of dying is important for high quality end-of-life care however, little is known about how clinicians recognise dying. Late recognition is common and can lead to futile treatment that can prolong or increase suffering and prevent a change in the focus of care. AIM: To explore how clinicians caring for dying people recognise that they are in the last days or hours of life, as well as the factors that influence the recognition of dying. DESIGN: A systematically constructed integrative review of the literature. METHODS: Medline, Scopus, Cumulative Index to Nursing and Allied Health Literature, PsycInfo and Allied and Complementary Medicine were searched in July 2022. Papers were included if they were original research, discussed how clinicians recognise dying, available in English language and published in 2012 or later. A constant comparison approach was applied to the analysis and synthesis of the literature. RESULTS: 24 papers met the inclusion criteria. There were 3 main categories identified: 'Clues and signals' refers to prompts and signs that lead a clinician to believe a person is dying, incorporating the sub-categories 'knowing the patient over time', and 'intuition and experience'. 'Recognition by others' is where clinicians come to recognise someone is dying through others. This can be through a change in the context of care such as a tool or care plan or by communication with the team. 'Culture, system and practice' refers to the cultural beliefs of a setting that influences awareness of dying and denial of death as a possibility and avoidance of naming death and dying directly. System and practice of the setting also impact on recognition of dying. This involves work pace and intensity, shift systems and timing of senior reviews of patients. Uncertainty and its impact on recognition of dying are evident throughout the findings of this review. The seeking of certainty and the absence of the possibility of dying contributes to late recognition of dying. DISCUSSION: Recognition of dying is a complex process that occurs over time, involving a combination of intuition and gathering of information, that is influenced by contextual factors. A culture where dying is not openly acknowledged or even named explicitly contributes to late recognition of dying. A shared language and consistent terminology for explicitly naming dying are needed. Uncertainty is intrinsic to the recognition of dying and therefore a shift to recognising the possibility of dying rather than seeking certainty is needed. REGISTRATION: (PROSPERO) CRD42022360900. Registered September 2022.

Art Therapy in Patients with Terminal Cancer and Their Families: A Multiple Case Study.

Purpose: The study explored the meaning of experiences within a family art therapy process among terminal cancer patients and their families. Methods: Ten participants, including four terminal cancer patients currently admitted to the hospice ward at an inpatient hospice facility in S City and four caregiving family members, engaged in four cycles of family art therapy sessions. The sessions were conducted weekly or bi-weekly, and each lasted approximately 50 minutes. Results: Nine cross-case themes emerged "feeling unfamiliar and intimidated by the idea of expressing my thoughts through art," "trying to accept the present and positively overcome sadness," "expressing hope through emotional bonds during the process of parting," "conveying and preserving personal and family beliefs," "feeling upset about family imbalances caused by deteriorating health," "valuing togetherness and striving for stability amidst the current challenges," "art as a medium of empowerment for patients and facilitator of family conversations, even amidst difficulties," "sharing a range of emotions-not just joy, but concerns and sorrow-through art," and "gratitude for art's role in improving family communication and connection through artwork. Conclusion: The findings of this study lead to several conclusions. First, patients and their families faced psychological challenges when confronted with impending death, yet they strove to remain optimistic by seeking meaning in their struggles. Second, families practiced open and expressive communication, sharing a spectrum of complex emotions with one another. Third, even as the patient's condition worsened, resulting in family fatigue, their support and cohesion strengthened.

An Analysis of John Bowlby's Mourning Stages in Family Art Therapy as a Way to Help the Family Mourning Process.

Purpose: Pediatric palliative care is a rapidly developing multidisciplinary approach that supports children with life-limiting conditions and their families. However, there is limited evidence on how to effectively support bereaved parents and siblings. The purpose of this study is to explore the therapeutic impact of art therapy for bereaved families, in accordance with John Bowlby's four-stage theory of mourning. Methods: This single-case study employed the consensual qualitative research method. Art therapy records of bereaved families were reviewed individually, and records from one case were selected. Verbal statements made during the art therapy sessions and photocopies of the artworks were analyzed to understand the mourning process of the family. Results: A total of 113 statements and 12 artworks from 19 art therapy sessions were analyzed. As the art therapy progressed, each family member exhibited a pattern of engaging in more positive and healthy conversations in daily life, demonstrating the final stage of mourning reorganization and recovery. The family dynamics also revealed that they reconstructed their inner world and redefined the meaning of loss, which is the final stage of mourning. The art therapy provided a safe environment for the family, allowing them to fulfill their wishes and regain the strength needed for recovery. Conclusion: This study suggests that art therapy supports bereaved families in alleviating their psychological difficulties, engaging in a healthy mourning process, and functioning as members of society. Further research is needed to better understand the effect of art therapy as a bereavement support tool in pediatric palliative care.

A terapia da dignidade: uma intervenção especializada no conforto da pessoa em situação paliativa / Dignity therapy: a specialised intervention to comfort people in a palliative situation

Ao longo dos últimos anos, temos assistido a um aumento da esperança média de vida e o consequente envelhecimento populacional, aliados ao aumento da prevalência de doenças crónicas. Isto leva-nos a refletir sobre o fim de vida, e sobre a necessidade de conforto e qualidade de vida até ao último momento. Portanto, emerge a necessidade de Cuidados Paliativos (CP), que têm o objetivo o alívio do sofrimento físico, psicológico, social e espiritual, com base na identificação precoce e no tratamento rigoroso da dor e outros sintomas físicos, mas também psicossociais e espirituais, das pessoas que são portadoras de uma doença incurável e/ou grave, progressiva e avançada assim como as suas famílias ou pessoas significativas. Neste sentido, dando continuidade ao processo de aprendizagem, optou-se por realizar o estágio num serviço de cuidados paliativos de um hospital central com o objetivo de desenvolver competências comuns e específicas de enfermeiro especialista na área da enfermagem à pessoa em situação paliativa. O presente relatório do Estágio de Natureza Profissional contempla a descrição e análise critico-reflexiva das atividades realizadas e as competências adquiridas ao longo do mesmo. Para dar resposta aos objetivos propostos, das atividades desenvolvidas destacam-se o estudo de investigação, que se debruçou sobre a dimensão espiritual, ­concretamente sobre a Terapia da Dignidade (TD) no doente em cuidados paliativos. Neste sentido realizou-se uma scoping review, com o objetivo de mapear os efeitos da terapia da dignidade em doentes em cuidados paliativos. Os principais resultados mostram que esta terapia produz efeitos benéficos a nível espiritual, psi-emocional, físico, social e da própria qualidade de vida. Com este estudo percebeu-se que a TD tem efeitos bastante positivos no alívio do sofrimento do doente em situação de fim de vida pelo que pode ser considerada uma estratégia útil no âmbito dos cuidados paliativos tornando-os em cuidados cada vez mais dignos, humanizados e com um olhar holístico sobre o doente e a família. A nível do desenvolvimento de competências comuns, nomeadamente nas competências de gestão e formação, destacam-se nas atividades realizadas a elaboração de uma "Proposta de Protocolo de Apoio no Luto", e ainda à realização de duas formações "Dignidade em Fim de Vida" e "Apoio no Luto" dando resposta as necessidades da equipa e do serviço onde foi realizado o estágio. A nível do desenvolvimento de competências específicas, as atividades assentaram nas dimensões essenciais dos CP, nomeadamente: gestão de sintomas; comunicação; trabalho em equipa, apoio à família e apoio no luto, respeitando os princípios éticos, deontológicos e legais. Concluindo, verifica-se a necessidade de continuar a concetualizar e desenvolver cuidados paliativos especializados, nomeadamente pelo enfermeiro especialista em enfermagem à pessoa em situação paliativa, através da inclusão de estratégias sustentadas na melhor evidência, tais como a terapia da dignidade, e assim, proporcionar cuidados mais dignos ao doente e família, com o propósito de os ajudar a um melhor entendimento das formas de alívio de sofrimento na sua fase final de vida.

Over the last few years, we have witnessed an increase in life expectancy and the subsequent aging of the population, along with the rise in the prevalence of chronic diseases. This leads us to reflect on the end of life and the need for comfort and quality of life until the last moment. Thus, the need for palliative care arises. Palliative care's goal is the relief of physical pain, psychological, social and spiritual suffering for people diagnosed with an incurable and/or severe, progressive and advanced disease and their families or close friends. To achieve this, it uses early identification and rigorous treatment of pain and other physical, psychosocial and spiritual symptoms. In this sense, continuing the learning process, it was chosen to carry out the internship in a palliative care service at a central hospital aiming to develop common and specific specialist nurse skills in the field of nursing for individuals in palliative situations. This Professional Nature Internship report includes the description and critical-reflexive analysis of the activities carried out and the competencies acquired throughout the internship. To address the proposed objectives, among the activities carried out, the research study is highlighted, which focused on the spiritual dimension - specifically on Dignity Therapy (DT) in palliative care patients. In this regard, a scoping review was conducted aiming to map the effects of Dignity Therapy (DT) on patients in palliative care. The main findings show that this therapy has beneficial effects on the spiritual, psychosocial, physical, social, and overall quality of life aspects. Through this study, it was understood that DT has highly positive effects in relieving the suffering of patients in end-of-life situations, making it a valuable strategy within palliative care, which contributes to providing increasingly dignified, humanized care, with a holistic approach to the patient and their family. Regarding the development of common competencies, namely in management and training skills, the activities undertaken included the creation of a "Proposal for a Bereavement Support Protocol." Additionally, two training sessions were conducted on "Dignity at the End of Life" and "Bereavement Support," addressing the needs of the team and the service where the internship took place. Regarding the development of specific competencies, the activities focused on the essential dimensions of palliative care, including symptom management, communication, teamwork, family support, and bereavement support, adhering to ethical, deontological, and legal principles. In conclusion, there is a need to continue conceptualizing and developing specialized palliative care, particularly by the nurses specialized in nursing for individuals in palliative situations, through the incorporation of evidence-based strategies, such as dignity therapy, to provide more dignified care for patients and their families, aiming to help them better understand ways to alleviate suffering in their end-of-life phase.

Physical activity service provision in hospice care: A national mixed-methods study.

BACKGROUND: Physical activity (PA) interventions help people with advanced incurable diseases to manage symptoms and improve their quality of life. However, little is known about the extent to which PA is currently delivered in hospice care in England. OBJECTIVES: To determine the extent of and intervention features of PA service provision in hospice care in England alongside barriers and facilitators to their delivery. METHODS: An embedded mixed-methods design using (1) a nationwide online survey of 70 adult hospices in England and (2) focus groups and individual interviews with health professionals from 18 hospices. Analysis of the data involved applying descriptive statistics to the numeric items and thematic analysis to the open-ended questions. Quantitative and qualitative data were collected and analyzed separately. RESULTS: The majority of responding hospices (n = 47/70, 67%) promoted PA in routine care. Sessions were most often delivered by a physiotherapist (n = 40/47, 85%) using a personalized approach (n = 41/47, 87%) and included resistance/thera bands, Tai Chi/Chi Qong, circuit exercises, and yoga. The following qualitative findings were revealed: (1) variation among hospices in their capacity to deliver PA, (2) a desire to embed a hospice culture of PA, and (3) a need for an organizational commitment to PA service provision. SIGNIFICANCE OF RESULTS: While many hospices in England deliver PA, there is considerable variation in its delivery across sites. Funding and policy action may be needed to support hospices to initiate or scale up services and address inequity in access to high-quality interventions.

Measuring spiritual uncertainty for hospice and palliative care providers.

BACKGROUND: Spiritual uncertainty is a new construct for end-of-life care that focuses on the questions, worries and doubts people have with end-of-life spirituality. Spiritual uncertainty can contribute to spiritual distress for patients and families dealing with the end of life, as well as lead healthcare providers to avoid spiritual care methods. AIMS: This article reports on the item construction of a new survey design to measure the spiritual uncertainty of healthcare providers. METHODS: Items were constructed from qualitative data gathered from five focus groups (with a total of 23 interdisciplinary hospice and palliative care providers being surveyed). Data were developed through three rounds of item construction, selection/refinement and assessment. FINDINGS: A final pool of 42 items was constructed to measure the spiritual uncertainty of healthcare providers. Expert validity was obtained by 16 interdisciplinary hospice and palliative care providers. CONCLUSION: This survey is the first to measure spiritual uncertainty of healthcare providers. Additional research is needed to assess the psychometric properties of survey items.

Social and therapeutic horticulture as a palliative care intervention.

OBJECTIVES: Social and therapeutic horticulture (STH) is little known in palliative care. This evaluation sets out to explore the effectiveness of STH in relieving distress, managing symptoms and supporting people with advanced and terminal illness to live well throughout each stage of the disease trajectory. METHODS: STH was provided for 218 patients in an indoor hospice setting during a 2-year period (April 2018 to March 2020). Nature-based interventions, such as potting up plants, floristry and creating miniature gardens, were adapted for all participants to create a nature connection experience while indoors. The Distress Thermometer (DT) was used to measure perceived distress before and after each session, and patients' reports of their subjective experience were recorded verbatim. RESULTS: Results showed a statistically significant reduction in DT scores of between 54% and 60%. Patients also self-reported an improvement in quality of life and well-being and in management of symptoms including a reduction in pain. CONCLUSIONS: This evaluation shows that STH is effective in relieving distress in palliative care and may be considered a valued therapeutic intervention. The findings can inform planning within hospices and palliative care settings to enhance the care of patients and their family members.

Team-Based Hospice Referrals: A Potential Quality Metric for Lung Cancer in the Immunotherapy Era.

BACKGROUND: Immune checkpoint inhibitors (ICIs) can lead to durable responses in patients with lung cancer but may delay transitions to hospice at the end of life (EOL). We aimed to test the association of continuity of care with EOL outcomes in the ICI era. METHODS: We collected retrospective data on all patients with lung cancer who started ICI treatment at a single comprehensive cancer center in the United States (1/1/14-5/1/18) and subsequently died. We defined a hospice referral as having continuity of care if placed by a provider from the patient's multidisciplinary cancer team (e.g., a medical oncologist, palliative care specialist, intensivist, and hospitalist). RESULTS: In this cohort of 143 patients, 58% had a team-based hospice referral which was associated with a lower risk of death in the hospital. The most common reason patients declined hospice at EOL was an unwillingness to discontinue cancer-directed therapy. As compared to a similar historical cohort of patients treated with chemotherapy alone (2008-2010), there was a similar rate of hospice referral (68% vs 74%) but higher rates of new systemic therapy initiated within 30 days of death (17% vs 6%, p .001) and last dose within 14 days of death (13% vs 5%, p .005). CONCLUSIONS: Future studies should test the continuity of care at EOL as a new quality metric for advanced NSCLC.

Vitamin D levels in hospice in-patients.

OBJECTIVE: Serum 25-hydroxyvitamin D was obtained alongside routine blood tests in all suitable patients admitted to the St Cuthbert's Hospice Inpatient Unit for a period of 12 months. Supplementation was offered to exclude vitamin D insufficiency or deficiency as a contributor to the complex pain and symptom profile of our patients. METHODS: During admission, and alongside routine blood tests, a serum 25-hydroxyvitamin D test was requested for suitable patients. Supplementation was offered to patients with serum 25-hydroxyvitamin D less than 50 nmol/L. RESULTS: This audit identified that 79.73% of patients assessed had a 25-hydroxyvitamin D level less than 50 nmol/L and were therefore insufficient or deficient in vitamin D. The results of the audit were discussed within the clinical team at the hospice and guidance changed to obtain serum 25-hydroxyvitamin D levels in all suitable patients. A reaudit highlighted that some patients were missed from testing and therefore reminders were sent to the clinical team. CONCLUSIONS: Most patients admitted to St Cuthbert's Hospice had either insufficient or deficient levels of vitamin D. It seems reasonable for all suitable palliative care patients to have their vitamin D level checked and to be started on a suitable dose of vitamin D replacement therapy.

Unmet spiritual needs in palliative care: psychometrics of a screening checklist.

BACKGROUND: While studies in palliative care use measures of spirituality and religious belief, there have been few validation studies of a screening tool that identifies unmet spiritual needs. METHODS: A multidisciplinary research team developed and examined the usefulness, reliability and validity of a 17-item Spiritual Concerns Checklist (SCC) as a screening tool for unmet spiritual needs. A cohort of patients recruited from three palliative care services in Sydney and Melbourne, Australia completed anonymous questionnaires. Factor structure and item response theory were used to examine its properties; concurrent validity employed the Functional Assessment of Chronic Illness Therapy-Spiritual Well-Being Scale (FACIT-Sp-12). RESULTS: Among 261 patients, while only 15% directly sought spiritual care, nearly 62% identified at least one spiritual concern. Existential needs (fear of the dying process 32%; loss of control 31%), regret (20%), need for forgiveness (17%), guilt (13%), loss of hope (13%) and meaning (15%) were prominent concerns. Eleven concerns were present for more than 10% of the participants and 25% of religiously orientated participants expressed >4 concerns. The 17-item SCC was unidimensional, with satisfactory reliability. Concurrent validity was evident in the reduced sense of meaning and peace on the FACIT-Sp-12. CONCLUSION: This preliminary Rasch analysis of the newly developed SCC has demonstrated its usefulness, reliability and validity. Our findings encourage refinement and ongoing development of the SCC with further investigation of its psychometric properties in varying populations.

Espiritualidade e dor em pacientes com câncer de mama metastático / Spirituality and pain in patients with metastatic breast cancer / Espiritualidad y dolor en pacientes con cáncer de mama metastásico

Resumo Mediante estudo observacional, transversal e quantitativo que utilizou os instrumentos de avaliação Brief Pain Inventory (dor), Functional Assessment of Chronic Illness Therapy Spiritual Well-Being (bem-estar espiritual) e Beck Depression Inventory - Short Form (depressão), busca-se avaliar a influência da espiritualidade e da depressão na percepção de dor de pacientes acometidas por neoplasia de mama metastática. A idade média foi 57,3 anos e, das 30 participantes, 24 (80%) tratavam-se em serviço público; 17 (57%) tinham diagnóstico de câncer de mama há mais de cinco anos; e 27 (90%) realizavam alguma prática religiosa/espiritual. Pacientes com escore de bem-estar espiritual acima da mediana apresentaram menor escore dos sintomas depressivos (3 vs . 6; p =0,021). Não houve diferença significativa em relação à mediana do escore total do bem-estar espiritual quando estratificado pela mediana da percepção de dor (31,5% vs . 28,5%; p =0,405). Maior manifestação de bem-estar espiritual pode estar relacionada a menores índices de depressão.

Abstract This observational, cross-sectional and quantitative study, by means of the assessment instruments Brief Pain Inventory, Functional Assessment of Chronic Illness Therapy Spiritual Well-Being and Beck Depression Inventory - Short Form, evaluated the influence of spirituality and depression in the pain perception of patients with metastatic breast cancer. Mean age was 57.3 years. Of the 30 participants, 24 (80%) were treated in a public service, 17 (57%) had been diagnosed with breast cancer for more than 5 years, and 27 (90%) were religious or spiritual. Patients with spiritual well-being scores above the median had lower depressive symptom scores (3 vs. 6; p =0.021). The median total score of spiritual well-being showed no significant difference when stratified by median pain perception (31.5% vs. 28.5%; p =0.405). Greater spiritual well-being may be related to lower rates of depression.

Resumen Este estudio observacional, transversal y cuantitativo utilizó los instrumentos Brief Pain Inventory (dolor), Functional Assessment of Chronic Illness Therapy Spiritual Well-Being (bienestar espiritual) y Beck Depression Inventory - Short Form (depresión), para evaluar si la espiritualidad y la depresión influencian en la percepción del dolor en pacientes con cáncer de mama metastásico. La edad promedio fue de 57,3 años; de las 30 participantes, 24 (80%) recibían atención pública; 17 (57%) tenían diagnóstico de cáncer de mama hace más de cinco años; y 27 (90%) solían tener alguna práctica religiosa/espiritual. Aquellas con puntuación de bienestar espiritual superior a la mediana tuvieron una puntuación más baja de síntomas depresivos (3 vs. 6; p =0,021). No hubo diferencias significativas en la mediana de la puntuación total de bienestar espiritual cuando se estratificó por la percepción mediana del dolor (31,5% vs. 28,5%; p =0,405). Una mayor sensación de bienestar espiritual se relacionó a bajas tasas de depresión.

The State of Spirituality Scale as a Screening Tool for Spiritual Distress.

Patients and families facing serious and life- threatening illnesses are at risk for spiritual distress. Screening for spiritual distress is an efficient way of identifying issues. The State of Spirituality scale takes a uniq.

Development of a model of Home-based Cancer Palliative Care Services in Mumbai - Analysis of Real-world Research Data over 5 Years.

Objectives: Patients needing palliative care prefer to be cared for in the comfort of their homes. Although private home health-care services are entering the health-care ecosystem in India, for the majority it is still institution-based. Here, we describe a model of home-based palliative care developed by the Tata Memorial Hospital, a government tertiary care cancer hospital. Materials and Methods: Data on patient demographics, services provided and outcomes were collected prospectively for patients for the year November 2013 - October 2019. In the 1st year, local general physicians were trained in palliative care principles, bereavement services and out of hours telephone support were provided. In the 2nd year, data from 1st year were analysed and discussed among the study investigators to introduce changes. In the 3rd year, the updated patient assessment forms were implemented in practice. In the 4th year, the symptom management protocol was implemented. In the 5th and 6th year, updated process of patient assessment data and symptom management protocol was implemented as a complete model of care. Results: During the 6 years, 250 patients were recruited, all suffering from advanced cancer. Home care led to good symptom control, improvement of quality of life for patients and increased satisfaction of caregivers during the care process and into bereavement. Conclusion: A home-based model of care spared patients from unnecessary hospital visits and was successful in providing client centred care. A multidisciplinary team composition allowed for holistic care and can serve as a model for building palliative care capacity in low- and middle-income countries.

"I Didn't Sign Up for This": Perspectives from Persons Living with Dementia and Care Partners on Challenges, Supports, and Opportunities to Add Geriatric Neuropalliative Care to Dementia Specialty Care.

BACKGROUND: In the United States, dementia specialty centers affiliated with centers of excellence for research hold promise as locations to develop innovative, holistic care in care systems otherwise siloed by discipline or payer. OBJECTIVE: We conducted foundational research to inform development of patient-and family-centered palliative care interventions for dementia specialty centers. METHODS: We interviewed persons living with dementia (PLWD), current, and former care partners (CP) recruited from a specialty dementia clinic and purposively selected for variation across disease syndrome and stage. A framework method of thematic analysis included coding, analytic matrices, and pattern mapping. RESULTS: 40 participants included 9 PLWD, 16 current CPs, and 15 former CPs of decedents; 48% impacted by Alzheimer's disease dementia. While help from family, support groups and adult day centers, paid caregiving, and sensitive clinical care were invaluable to PLWD, CPs, or both, these supports were insufficient to navigate the extensive challenges. Disease-oriented sources of distress included symptoms, functional impairment and falls, uncertainty and loss, and inaccessible care. Social and relational challenges included constrained personal and professional opportunities. The obligation and toll of giving or receiving caregiving were challenging. Clinical care challenges for PLWD and/or CPs included care fragmentation, insufficient guidance to inform planning and need for expert interdisciplinary clinical care at home. CONCLUSION: Findings highlight the breadth and gravity of gaps, which surpass the disciplinary focus of either behavioral neurology or palliative care alone. Results can inform the development of novel interventions to add principles of geriatrics and neuropalliative care to dementia care.

Protocolo de assistência de enfermagem ao paciente em cuidado terminal: Construção através de revisão integrativa / Protocolo de asistencia de enfermería para pacientes en cuidados terminales: Construcción mediante revisión integrativa / Nursing assistance protocol for patients in terminal care: Construction through integrative review

Objetivo: Construir protocolo de enfermagem para o manejo de pacientes em terminalidade. Metodologia: Revisão integrativa da literatura, utilizando as bases de dados da BVS, CINAHL, SCOPUS, Web of Science, Embase e PUBMED, sem limites cronológicos, nos idiomas português, inglês e espanhol. Resultados: Os diagnósticos de enfermagem da classificação NANDA 2021-2023 mais prevalentes pertenciam ao domínio atividade/repouso, seguidos pelo domínio enfrentamento/tolerância ao estresse e segurança/proteção. Para cada diagnóstico prevalente estabeleceu-se intervenções de enfermagem, plausíveis no contexto de terminalidade. Conclusão: O protocolo de assistência de enfermagem ao paciente em cuidado terminal é um importante ponto de partida para se estabelecer condutas de enfermagem e fomentar a prática assistencial aos pacientes em terminalidade.(AU)

Objective: To build a nursing protocol for the management of terminally ill patients. Methodology: Integrative literature review, using the VHL, CINAHL, SCOPUS, Web of Science, Embase and PUBMED databases, without chronological limits, in Portuguese, English and Spanish. Results: The most prevalent NANDA 2021-2023 classification nursing diagnoses belonged to the activity/rest domain, followed by the coping/stress tolerance and safety/protection domains. For each prevalent diagnosis, plausible nursing interventions were established in the context of terminality. Conclusion: The nursing care protocol for terminally ill patients is an important starting point for establishing nursing behaviors and fostering care practice for terminally ill patients(AU)

Objetivo: Construir un protocolo de enfermería para el manejo de pacientes terminales. Metodología: Revisión integrativa de la literatura, utilizando las bases de datos BVS, CINAHL, SCOPUS, Web of Science, Embase y PUBMED, sin límites cronológicos, en portugués, inglés y español. Resultados: Los diagnósticos de enfermería de la clasificación NANDA 2021-2023 más prevalentes pertenecieron al dominio actividad/descanso, seguido por los dominios afrontamiento/tolerancia al estrés y seguridad/protección. Para cada diagnóstico prevalente, se establecieron intervenciones de enfermería plausibles en el contexto de la terminalidad. Conclusión: El protocolo de atención de enfermería al paciente terminal es un importante punto de partida para establecer comportamientos de enfermería y fomentar la práctica del cuidado al paciente terminal.(AU)

Healthcare Provider Knowledge, Attitudes, and Practices in Hospice Care and Their Influencing Factors: A Cross-sectional Study in Shanghai.

BACKGROUND: In 2017, the Chinese government launched a pilot project in hospice care (HC), in which Shanghai was a pioneer. Healthcare provider knowledge, attitudes, and practices in hospice care (KAPHC) may facilitate or hinder HC development. To determine how to design targeted training for healthcare providers and policies to improve their KAPHC, we conducted an original study based on an indigenized KAPHC scale to (a) comprehensively measure the KAPHC baseline of healthcare providers in Shanghai and (b) explore its influencing factors. METHODS: A cross-sectional study was designed to evaluate healthcare providers' KAPHC with the indigenized KAPHC scale. Descriptive analysis, linear regression, and Pearson's (r) correlation analysis were performed to uncover providers' KAPHC, its influencing factors, and their correlations. RESULTS: The KAPHC scale proved applicable to the knowledge, attitudes, and practices of the large sample of providers we surveyed. The 7027 KAPHC scaling results revealed that 42.44% of participants had HC experience and 57.49% were willing to provide HC. The mean accuracy of the responses related to knowledge was 59.30%. Scoring rates for attitudes, confidence, and self-reported practices were 74.20%, 73.96%, and 75.55%, respectively. The linear regression revealed that higher KAPHC scores were associated with experience and willingness and varied with professional specializations. The Pearson's (r) correlation evidenced that HC practices were strongly correlated with confidence (r = 0.648, P<.001) and moderately correlated with attitudes (r = 0.463, P<.001). CONCLUSION: We uncovered that targeted training for enhancing healthcare provider KAPHC in Shanghai should focus on psychological and spiritual care, the management of pain and other symptoms, and traditional Chinese medicine (TCM). Additionally, training should be scaled up for providers with different characteristics. Meanwhile, policy should encourage providers to work enthusiastically in HC-universal high-quality HC requires well-trained, supported, and motivated providers.

Spirituality Concern Toward Patients in Hospice Care during COVID-19 Pandemic in China.

Tension, anxiety, or fear spread all over the world during COVID-19 pandemic. How health professionals provide terminally ill patients with humanistic care to deal with fear is worth consideration. A more abundant spirituality concern in the body-mind-spirit care mode on patients in hospice care is appied in our practice.