Rest-in-Peace: Research on the Architectural Types and Design Ideas to Guide Design of Hospice Care Building.

In the context of an aging population, the concept of peaceful end-of-life care has gained increasing significance as an essential component of individuals' fundamental well-being. This underscores the importance of researching and developing hospice care facilities and service systems dedicated to providing a tranquil resting environment. This study focuses on selected hospice care buildings, examining their service model evolution and architectural design. Through case analyses, it explores contemporary hospice care architecture, identifying various types and spatial design features that cater to the end-of-life needs of individuals. The findings guide the design of hospice care buildings in China, emphasizing patient-living areas, medical care zones, and auxiliary functional spaces. This comprehensive approach aims to enhance terminally ill patients' comfort, serenity, and dignity. Moreover, it aims to provide emotional and post-funeral support to terminally ill patients' families.

The inaugural United States World Hospice and Palliative Care Day Celebration: A virtual coming together.

OBJECTIVE: On October 10, 2020, the Memorial Sloan Kettering Cancer Center Supportive Care Service hosted their first-ever United States (US) World Hospice and Palliative Care Day (WHPCD) Celebration. The purpose of this article is to describe the US inaugural event in alignment with the broader goals of WHPCD and provide lessons learned in anticipation of the second annual conference to be held on October 5-6, 2021. METHODS: Description of the inaugural event in the context of COVID-19 and WHPCD, co-planning conference team reflection, and attendee survey responses. RESULTS: The Worldwide Hospice Palliative Care Alliance initially launched WHPCD in 2005 as an annual unified day of action to celebrate and support hospice and palliative care around the world. The US-based innovative virtual conference featured 23 interprofessional hospice and palliative care specialists and patient and family caregiver speakers across nine diverse sessions addressing priorities at the intersection of COVID-19, social injustice, and the global burden of serious health-related suffering. Two primary aims guided the event: community building and wisdom sharing. Nearly 270 registrants from at least 16 countries and one dozen states across the US joined the free program focused on both personal and professional development. SIGNIFICANCE OF RESULTS: Unlike many other academic conferences and professional gatherings that were relegated to online forums due to pandemic-related restrictions, the US WHPCD Celebration was intentionally established to create a virtual coming together for collective reflection on the barriers and facilitators of palliative care delivery amid vast societal change. The goal to ensure a globally relevant and culturally inclusive agenda will continue to draw increased participation at an international level during future annual events. Finally, the transparent and respectful sharing of palliative care team experiences in the year preceding the conference established a safe environment for both individual expression and scholarly discussion.

A non-lab nomogram of survival prediction in home hospice care patients with gastrointestinal cancer.

BACKGROUND: Patients suffering from gastrointestinal cancer comprise a large group receiving home hospice care in China, however, little is known about the prediction of their survival time. This study aimed to develop a gastrointestinal cancer-specific non-lab nomogram predicting survival time in home-based hospice. METHODS: We retrospectively studied the patients with gastrointestinal cancer from a home-based hospice between 2008 and 2018. General baseline characteristics, disease-related characteristics, and related assessment scale scores were collected from the case records. The data were randomly split into a training set (75%) for developing a predictive nomogram and a testing set (25%) for validation. A non-lab nomogram predicting the 30-day and 60-day survival probability was created using the least absolute shrinkage and selection operator (LASSO) Cox regression. We evaluated the performance of our predictive model by means of the area under receiver operating characteristic curve (AUC) and calibration curve. RESULTS: A total of 1618 patients were included and divided into two sets: 1214 patients (110 censored) as training dataset and 404 patients (33 censored) as testing dataset. The median survival time for overall included patients was 35 days (IQR, 17-66). The 5 most significant prognostic variables were identified to construct the nomogram among all 28 initial variables, including Karnofsky Performance Status (KPS), abdominal distention, edema, quality of life (QOL), and duration of pain. In training dataset validation, the AUC at 30 days and 60 days were 0.723 (95% CI, 0.694-0.753) and 0.733 (95% CI, 0.702-0.763), respectively. Similarly, the AUC value was 0.724 (0.673-0.774) at 30 days and 0.725 (0.672-0.778) at 60 days in the testing dataset validation. Further, the calibration curves revealed good agreement between the nomogram predictions and actual observations in both the training and testing dataset. CONCLUSION: This non-lab nomogram may be a useful clinical tool. It needs prospective multicenter validation as well as testing with Chinese clinicians in charge of hospice patients with gastrointestinal cancer to assess acceptability and usability.

Professional oral care in end-of-life patients with advanced cancers in a hospice ward: improvement of oral conditions.

BACKGROUND: In end-of-life patients with advanced cancers, oral examination, oral care, and oral re-examination are crucial. Although oral symptoms are among the major complaints of end-of-life patients, few studies have focused on oral care in these patients. In this study, the association between oral symptoms and oral dryness among end-of-life patients was examined, and improvement of oral conditions after oral care interventions by a professional dentist was quantified. METHODS: This prospective intervention study included 27 terminally ill patients with advanced cancers in a hospice ward. Professional oral care was administered every morning, and the improvement of oral conditions was assessed by comparing oral conditions before and after the intervention. Oral assessment was performed using the Oral Health Assessment Tool (OHAT) and Oral Assessment Guide. Oral dryness was evaluated through Clinical Diagnosis Classification of oral dryness and an oral moisture device. Oral cleanliness was evaluated using a bacterial counter, and tongue smears were collected for Candida examination; furthermore, oral function was recorded. RESULTS: The presence of oral mucositis was closely associated with severe oral dryness (odds ratio [OR] = 14.93; 95% confidence interval [CI]: 1.95-114.38). The level of oral debris retention was significantly related to the degree of oral dryness (OR = 15.97; 95% CI: 2.06-123.72). The group with higher scores (OHAT > 8), which represent poor oral conditions, showed severe oral dryness (OR = 17.97; 95% CI: 1.45-223.46). Total OHAT scores (median: 7 vs 2) and those of other subgroups (lip, tongue, gums and tissues, saliva, and oral cleanliness showed a significant decrease after the intervention. Furthermore, the occurrence of mucositis (47.1% vs 0%), candidiasis rate (68.8% vs 43.8%), oral dryness self-sensation (63.6% vs 9.1%), and severe oral debris (52.9% vs 11.8%) decreased significantly. CONCLUSIONS: Proper oral care can improve oral health and hygiene, reduce the rate of mucositis, reduce the sensation of oral dryness, increase oral moisture, and reduce the chances of oral infections among end-of-life patients. Daily oral care is necessary and can alleviate oral discomfort, increase food intake, and increase the chances of communication between end-of-life patients and their families.

Use of symptom-focused oncological cancer therapies in hospices: a retrospective analysis.

BACKGROUND: There is controversy regarding the practical implementation of symptom-focused oncological cancer therapies to hospice residents. In this study, we aim to analyse the use and indication of supportive-oncological cancer therapies in hospices. METHODS: We conducted a retrospective survey of all residents of two hospice centres in the government district of Lower Bavaria, Germany. Hospice 1 (H1) was a member of an oncological-palliative medical network, and hospice 2 (H2) was independently organized. The evaluation period was the first 40 months after the opening of the respective hospice care centre. Demographical and epidemiological data as well as indications and type of supportive-oncological cancer therapies were recorded. A descriptive analysis and statistical tests were performed. RESULTS: Of the 706 residents, 645 had an underlying malignant disease. The average age was 72 years and the mean residence time was 28 days. The most frequent cancer types were gastrointestinal cancers, gynaecological cancers and bronchial carcinomas. Overall 39 residents (33 in H1 and 6 in H2, p < 0.01) received symptom-focused oncological cancer therapy. The average age of these residents was 68 years, and the mean residence time was 55 days. The most common therapeutic indications were dyspnoea and pain. The most common symptom-focused oncological cancer therapies were bisphosphonates, transfusions (erythrocyte- and platelet- concentrates), radiotherapy and anti-proliferative drugs (chemotherapy, anti-hormonal- and targeted- therapies). Patients with therapy lived significantly longer than patients without therapy (p < 0.01). CONCLUSIONS: Symptom-focused oncological cancer therapies can be implemented in hospices; however, their implementation seems to require certain structural and organizational prerequisites as well as careful patient selection. As a palliative medical approach, the focus is to ameliorate the symptoms and not prolong life. Symptom-focused oncology treatment could be a further and important part for the therapy of hospice patients in the future.

Controlled substances in hospices after patient death: a cross-sectional survey of Ontario hospices.

Background Practices related to the handling of controlled substances (CS) in Ontario hospices have not been previously published and therefore, are unknown. Objective The objective of this study was to determine current practices, and policies, standard operating procedures (SOPs) and guidelines related to handling and disposal of CS at hospices across Ontario. Setting This study was a cross-sectional survey of hospices in Ontario. Method A list of all hospices in Ontario, 39 in total, was obtained from Hospice and Palliative Care Ontario. The Director at each hospice was contacted to request contact information on the person most likely to be knowledgeable about handling procedures related to CS. All participants who provided consent were asked to complete a telephone survey composed of 32 questions: 20 multiple-choice and 12 open-ended. Of the 20 multiple-choice, eight requested demographics of the hospice, nine were related to disposal and documentation practices. Main outcome measure Demographic information, disposal practices and patterns of care were summarized and presented as frequencies or means. Responses to open-ended questions were analyzed qualitatively to identify themes related to the handling and disposal of controlled substances in hospices. Results Twelve hospices (12/39; 31%) participated in the survey, 25 did not, and two were ineligible. Two (2/12, 17%) hospices served both pediatric and adult patients while 10 (83%) served adults only; 100% indicated that 76-100% of their patients were on CS at time of death. Eight (67%) had a policy for controlled substances handling, two had policy and SOPs and two had no policies, guidelines or SOPs. Qualitative analysis indicated variability in procedures for obtaining CS (patient's own supply, other patient's supply, hospice associated pharmacy), storage and dispensation of CS (location, secure lock, dispensing by staff or family), documentation (dispensing records, double signature, tracking returns and disposal), and disposal of CS (return to pharmacy, disposal at hospice, return to families). Conclusion Although most of the hospices have a policy, guideline or SOP on the handling of CS, there is considerable variation in practice of dispensing CS to patients, documentation and disposal of CS, which may provide an avenue for inappropriate use, abuse or diversion of CS.

Hospice and Palliative Care: An Overview.

Palliative medicine is specialized medical care for people with serious illness. Serious illness is one with high risk of mortality that negatively affects quality of life or function or is burdensome in symptoms, treatments, or caregiver stress. Palliative care improves symptom management and addresses the needs of patients and families, resulting in improved patient and caregiver quality of life and reduced symptom burden and health care utilization. Hospice is palliative care for patients with a prognosis of 6 months or less and is appropriate when goals are to avoid hospitalization and maximize time at home for patients who are dying.

Visiting Policies of Hospice Wards during the COVID-19 Pandemic: An Environmental Scan in Taiwan.

During an epidemic, almost all healthcare facilities restrict the visiting of patients to prevent disease transmission. For hospices with terminally ill patients, the trade-off between compassion and infection control becomes a difficult decision. This study aimed to survey the changes in visiting policy for all 76 hospice wards in Taiwan during the COVID-19 pandemic in March 2020. The altered visiting policies were assessed by the number of visitors per patient allowed at one time, the daily number of visiting slots, the number of hours open daily, and requisites for hospice ward entry. The differences in visiting policies between hospice wards and ordinary wards were also investigated. Data were collected by reviewing the official website of each hospital and were supplemented by phone calls in cases where no information was posted on the website. One quarter (n = 20) of hospice wards had different visiting policies to those of ordinary wards in the same hospital. Only one hospice ward operated an open policy, and in contrast, nine (11.8%) stopped visits entirely. Among the 67 hospice wards that allowed visiting, at most, two visitors at one time per patient were allowed in 46 (68.6%), one visiting time daily was allowed in 32 (47.8%), one hour of visiting per day was allowed in 29 (43.3%), and checking of identity and travel history was carried out in 12 wards (17.9%). During the COVID-19 pandemic, nearly all hospice wards in Taiwan changed their visiting policies, but the degree of restriction varied. Further studies could measure the impacts of visiting policy changes on patients and healthcare professionals.

Differences in well-being and fear of death among female hospice employees and volunteers in Hungary.

BACKGROUND: Voluntary work plays a significant role in hospice care, but international research has mainly been conducted on the mental health and fear of death of paid hospice staff. The aim of the present study was to compare the Hungarian hospice volunteers with paid employees with regard to attitudes and fear of death, as well as mental health in order to see their role in hospice work and their psychological well-being more clearly. METHODS: The target population of the cross-sectional questionnaire study was hospice care providers in Hungary (N = 1255). The response rate was 15.5% (N = 195); 91.8% (N = 179) of them were women. The mean age of female hospice workers was 45.8 years (SD = 10.46 years, range: 23-73 years). One-quarter (27.9%, N = 50) of the female respondents were volunteers. The instruments were: the Multidimensional Fear of Death Scale, the Perceived Stress Scale, the WHO-5 Well-Being Index, and a shortened versions of the Beck Depression Inventory and the Maastricht Vital Exhaustion Questionnaire. RESULTS: Volunteers scored significantly lower on 5 dimensions of fear of death than paid employees, and showed significantly lower levels of vital exhaustion and significantly higher levels of psychological well-being than paid employees. Fear of the dying process was associated with an increased perceived stress, depressive symptoms, and vital exhaustion in both groups. Psychological well-being showed a significant negative, moderate correlation with four aspects of fear of death among paid staff; this pattern did not appear in the volunteer group. In addition, the association between fear of premature death and perceived stress, vital exhaustion, and depressive symptoms was more pronounced is case of paid workers. CONCLUSION: Higher levels of psychological well-being and lower levels of fear of death among hospice volunteers suggest that they are less exhausted than paid employees. Increasing the recruitment of volunteers in hospices may help reduce the overload and exhaustion of paid employees.

Response and role of palliative care during the COVID-19 pandemic: A national telephone survey of hospices in Italy.

BACKGROUND: Palliative care is an important component of health care in pandemics, contributing to symptom control, psychological support, and supporting triage and complex decision making. AIM: To examine preparedness for, and impact of, the COVID-19 pandemic on hospices in Italy to inform the response in other countries. DESIGN: Cross-sectional telephone survey, in March 2020. SETTING: Italian hospices, purposively sampled according to COVID-19 regional prevalence categorised as high (>25), medium (15-25) and low prevalence (<15) COVID-19 cases per 100,000 inhabitants. A brief questionnaire was developed to guide the interviews. Analysis was descriptive. RESULTS: Seven high, five medium and four low prevalence hospices provided data. Two high prevalence hospices had experienced COVID-19 cases among both patients and staff. All hospices had implemented policy changes, and several had rapidly implemented changes in practice including transfer of staff from inpatient to community settings, change in admission criteria and daily telephone support for families. Concerns included scarcity of personal protective equipment, a lack of hospice-specific guidance on COVID-19, anxiety about needing to care for children and other relatives, and poor integration of palliative care in the acute planning response. CONCLUSION: The hospice sector is capable of responding flexibly and rapidly to the COVID-19 pandemic. Governments must urgently recognise the essential contribution of hospice and palliative care to the COVID-19 pandemic and ensure these services are integrated into the health care system response. Availability of personal protective equipment and setting-specific guidance is essential. Hospices may also need to be proactive in connecting with the acute pandemic response.

[Possibilities and challenges of perinatal hospice-palliative care]. / A perinatalis hospice-palliatív gondozás lehetoségei és kihívásai.

Perinatal hospice care is a special form of paediatric palliative care, with a focus on prenatally diagnosed malformation, providing physical, psychological and mental support with a holistic approach for the families. Our aim was to analyse how perinatal hospice-palliative care can be implemented and what opportunities it may provide on the basis of available professional guidelines. We introduce study and analysis of the professional guidelines and protocols, mainly from Anglo-Saxon countries, and describe some examples of best practices. Perinatal hospice is a specially demanding care regarding professional and personal challenges. Standardised guidelines based on consensus can serve as starting points, describing proper care and its conditions. Moreover, they can facilitate communication and coordinative processes between the collaborating specialists. Challenging conditions and possible solutions to them can be identified during supportive formative courses. Continuous formation means competency development in palliative care as well as in adequate communication. Orv Hetil. 2020; 161(12): 452-457.

Influential factors of well-being among Hungarian female hospice workers examined through structural equation modelling.

According to national hospice data in Hungary, approximately 1,600 healthcare employees and volunteers work in hospice care (country population of 9.9 million). The aim of the study was to identify and examine influential relationships among several variables that may affect well-being among female hospice workers. Structural equation modeling analysis was conducted utilising survey responses of 179 female hospice workers, including 79 nurses. Path analysis revealed that work over-commitment (being employed in more than one job) contributed to decreased psychological well-being through increased perceived stress, sleep difficulties and vital exhaustion. A greater sense of coherence was associated with lower levels of subjective stress, depressive symptoms and vital exhaustion and negatively correlated with over-commitment. Overall, even though the physical and mental burden of the workers is increasing because of increased use of hospice, according to these results, most still engaged in hospice work. Deeper analysis of the sense of coherence may point to development of effective interventions that can help maintain well-being of hospice workers and reduce attrition.

Compassion fatigue, watching patients suffering and emotional display rules among hospice professionals: a daily diary study.

BACKGROUND: Hospice workers are required to regularly use emotional regulation strategies in an attempt to encourage and sustain terminally ill patients and families. Daily emotional regulation in reaction to constantly watching suffering patients may be intensified among those hospice professionals who have high levels of compassion fatigue. The main object of this study was to examine the relationship between daily exposition to seeing patient suffering and daily emotional work, and to assess whether compassion fatigue (secondary traumatic stress and burnout) buffers this relationship. METHODS: We used a diary research design for collecting daily fluctuations in seeing patients suffering and emotional work display. Participants filled in a general survey and daily survey over a period of eight consecutive workdays. A total of 39 hospice professionals from two Italian hospices participated in the study. RESULTS: Multilevel analyses demonstrated that daily fluctuations in seeing patients suffering was positively related to daily emotional work display after controlling for daily death of patients. Moreover, considering previous levels of compassion fatigue, a buffering effect of high burnout on seeing patients suffering - daily emotional work display relationship was found. CONCLUSIONS: A central finding of our study is that fluctuations in daily witness of patients suffering are positively related to daily use of positive emotional regulations. Further, our results show that burnout buffers this relationship such that hospice professionals with high burnout use more emotional display in days where they recurrently witness patients suffering.

The Lived Experiences of Family Caregivers of Persons Dying in Home Hospice: Support, Advocacy, and Information Urgently Needed.

Death in America is changing from hospital to home, which demands complex skills by family caregivers. However, information from family members about the challenges of providing home hospice care until death is scant. To understand the challenges a family caregiver confronts when he/she decides to deliver hospice care and during the actual delivery of the hospice care, we used descriptive phenomenology methods to document the experience of 18 family caregivers as they delivered home hospice care. We learned the decision to begin home hospice was made by a physician, followed frequently by family resistance and refusal to assist. Family caregiver burden is enormous, compounded by fatigue, sleeplessness, and confusion on issues such as morphine dosage and administration. The stages and process of dying, such as transition, baffled family caregivers. All family caregivers agree financial and emotion support, empathic advocacy, and affirmation of their worth are needed to sustain them to care for the dying. The peacefulness following offering a home death comes at a high price to family caregivers. Evidence is needed from a randomized controlled trial as to effectiveness of advocacy support for family caregivers to increase their resiliency and higher probability of a good death for the dying.