Survey on hospice care attitude of family members of advanced cancer patients at different ages

BACKGROUND Hospice care plays an important role in improving the quality of life of advanced cancer patients,but controversy remains over whether age affects the attitudes of family members toward hospice care.AIM To investigate the attitudes of family members of advanced cancer patients of different ages toward hospice care.METHODS The study participants were 175 family members of patients with advanced cancer from January 2020 and October 2022.The participants were divided into youth(<40 years,n=65),middle-aged(40–60 years,n=59),and elderly(>60 years,n=51)groups.Researchers investigated and compared the degree of awareness regarding hospice care,attitudes,and whether the family members of patients would choose hospice care.RESULTS Among the family members of 175 patients,approximately 28%(49/175)were aware of hospice care.Awareness of hospice care,the proportion of hospice care acceptance and adaptation attitudes,and the proportion of those who chose hospice care in the youth group were higher in the middle-aged and elderly groups(P<0.05).No statistically significant difference was found in these three indicators between the middle-aged and elderly groups(P>0.05).Hospice care was chosen mainly to relieve pain and reduce unnecessary treatment,whereas the reasons for not choosing hospice care were mainly distrust and ethical concerns.CONCLUSION The family members of patients with advanced cancer had relatively low awareness of hospice care,while youth had a higher awareness of hospice care,acceptance,and adaptation attitudes,and were more willing to choose hospice care.

Hospice and Palliative Care in China's Mainland:History,Current Status and Challenges

The concept of End-of-Life Care(EOLC)came into China in the late1980s.However,hospice and palliative care in medical practice develope slowly.In recent years,profesionals,patients and their families,as well as government begin to attach importance to it.There is a hospice and palliative care movement now in China.This article gives an overview of the progress and the current status in multiple aspects of hospice and palliative care in China's Mainland,and points out the barriers and challenges for its further development in the future.

Nursing undergraduates’experiences of a simulation-centred educational program in hospice care in Macao:A qualitative research

Objectives:The study aimed to explore the experiences of nursing undergraduates participating in a simulation-centred educational program in hospice care in Macao,China.Methods:This descriptive qualitative study was based on the data collected through semi-structured individual interviews.Seventeen nursing undergraduates in Macao,China who attended the simulation-centred program in hospice care participated in this qualitative from November to December 2020.This program included three parts:introduction to hospice care(2 h),management of terminal symptoms(10 h),and hospice situation simulations(6 h).The interview data were analyzed using qualitative content analysis.Results:This study revealed two themes and six sub-themes.Theme 1 was developing competencies in caring for dying patients and their families,which included four subcategories of sensitivity to patients’needs,knowledge of hospice care,skills of symptom control and comfort supply,and communication skills.Theme 2 was improving the ability to self-care and support colleagues,which included two subcategories of reflection on life and death and sharing and supporting among colleagues.Conclusion:This program improved the competency of nursing undergraduates in hospice care and participants’learning experience was good.

Research on the Development of Hospice Care in Beijing

In recent years, hospice care in Beijing has developed rapidly. In order to further promote the development of hospice care in Beijing, this paper first analyzes the current situation of hospice care in Beijing, and then analyzes the existing problems of hospice care in Beijing, such as insufficient funds, lack of medical staff, no unified public information platform and low acceptance of hospice care. In view of the existing problems, the paper puts forward relevant policy suggestions for the development of hospice care in Beijing, such as increasing financial support, strengthening the propaganda and education of hospice care, strengthening the training of professional talents, improving the voluntary service system, formulating reasonable access standards, and building a unified public information platform, so as to further promote the effective, healthy and rapid development of hospice care in Beijing development.

Hospice care compliance of nurses working at a hospice ward in Korea

Purpose: The purpose of this study was to investigate the hospice care compliance of nurses working at a hospice ward and provide meaningful data to improve the hospice care compliances. Methods: Participants included 104 nurses working at the hospice ward of the hospital located at P and D cities. Data was collected from February to March 2012. The level of hospice care compliance was measured using Bae (2000)’s questionnaires. Data were analyzed with descriptive statistics, t-test, one-way ANOVA and Scheffè test using SPSS/WIN 18.0 program. Results: The level of hospice care compliance in hospice nurses working at a hospice ward was high (3.25 out of 4). In hospice care compliance, the physical area was highest, followed by the emotional, spiritual, and social areas. Hospice care compliance was significantly different according to age, marital status, education, religion, importance of religion, job position, job satisfaction and life satisfaction. Hospice care compliance was also significantly different according to the nurses’ experience of death, having license or certification related to hospice care and experiences related to clients’ death. Conclusions: The findings of this study showed that the level of hospice care compliance was high and the hospice care compliance in South Korea was primarily focused on physical care. Considering that spiritual needs are important needs in hospice clients, hospice nurses need to focus on those aspects more. To improve the quality of hospice care compliance in the hospice nurses, programs to increase hospice nurses’ job and life satisfaction are needed.

Characteristics of Nursing Care for Terminally Ill Patients in Hospice/Palliative Care Unit

The purpose of this study was to clarify the characteristics of nursing care for patient with terminally ill in the hospice/palliative care units. Semi-structured interviews on “communication, care, spiritual pain care and prediction of worsening of symptoms” were conducted, incorporating items indicated as important principles of palliative care by Lugton et al. Sixteen nurses at five hospice/ palliative care facilities in urban areas of Japan were surveyed in 2013, and results were analyzed qualitatively. Following characteristics by hospice/palliative care nurses (HPN) were categorized as [HPN sharing meaningful time with the patient] and [HPN’s continual attempts to understand the world in which the patient lives] in the communication;as [HPN providing comfortable care so that patients can value their last moments] and [HPN’s efforts to attend to patients so they can die as they hope to] in the care;and as [HPN’s observation in a range that does not interfere with the patient’s comfort] and [HPN senses that something is different from before] in the prediction of worsening of symptoms. Common characteristic was 【HPN’s support for patients approaching a natural death】. In this study, spiritual pain care was included in the communication and care, and could not be extracted alone. It was suggested that an HPN provides communication, care and prediction of worsening of symptoms with excellent judgment and technological competency, while placing importance on offering support for the patient’s natural death.

Hospice and Palliative Care Services in South Korea Supported by the National Health Insurance (NHI) Program

Previous main body of research on end-life-care in South Korea has focused on developing services quality in hospital settings or service payment system in National Health Insurance Program. The delivery system of hospice and palliative care services has evolved in diverse ways but there is little research on reviewing the past history of development and whole picture of them so far. So, the aim of this study is to review the old hospice and palliative care system and also to introduce the current one supported by the National Health Insurance Program in South Korea. The palliative care or hospice services in South Korea have been available in diverse settings and provided by different organizations (i.e. catholic hospitals or charity organizations). Finally, it was set up in 2004 that the hospice team or official Palliative Care Units (PCUs) was established in hospitals, in order to meet the end-of-life care for the patients with terminal cancer under the Cancer Control Act. The current hospice and palliative care services such as pain management, bereavement services, and counselling can be reimbursed by National Health Insurance program since 2008. Nevertheless hospice and palliative care services are available to dying patients, yet the utilization rate of hospice and palliative care services or the length of stay in the palliative care unit (PCU) is still relatively short compared to other country systems. South Korea is undergoing several efforts to expand the services in PCU along with the development of quality indicators for PCU. Hospice and palliative care services are still new in the health care system and unfamiliar to the public so it requires raising awareness for medical professionals and the public as well as further research.

Relationship of Clinical Nursing Competence to Nursing Occupational Experience in Hospice/Palliative Care Nurses in Japan

Aim: The purpose of this research is to examine the relationship between the clinical nursing competence and nursing occupational experience in hospice/palliative care nurses (HPN) in Japan. Methods: A mail survey using an anonymous self-administered questionnaire was conducted on clinical nursing competence regarding communication, care and prediction of worsening of symptoms with the authors’ previous research as a framework. The subjects were nurses working in hospice/palliative care units in Japan, and the period of survey was January to February, 2014. Results: In this study, the relationship between the clinical nursing competence and nursing occupational experience of HPNs in hospice/palliative care which was clarified in the authors’ previous research was examined. The results showed that the amount of clinical nursing experience as a nurse was related to clinical nursing competence in the care of end-of-life patients and worsening of symptoms. The abundance of specialized nursing experience was also related to clinical nursing competence in communication in addition to care and prediction of worsening of symptoms. Training experience was also shown to be effective for hospice/palliative care. Conclusion: From these results, clinical nursing competence of HPNs in care of end-of-life patients and prediction of worsening of symptoms are possibly learned through the accumulation of clinical nursing experience as a nurse. However, HPN’s clinical nursing competence in communication was suggested to be developed through nursing practice in hospice/palliative care.

The decision for hospice care in patients with terminal illness in Shanghai:A mixed-method study

Objectives To investigate why patients with terminal illness and their families in Shanghai choose the hospice ward and their decision-making process.Methods This was a mixed-method study consisting of a cross-sectional survey and a descriptive qualitative study.Medical decision-makers for patients hospitalized in hospice wards were recruited between September 2019 and July 2021.A medical decision-maker is a family member who makes medical decisions for a patient.All 146 participants completed a self-developed 10-item questionnaire that included five items about their demographic characteristics and five items about the decision-making process.The semi-structured interviews were conducted with nine participants to understand the family’s decision-making process when they chose a hospice ward.The interviews were analyzed using qualitative content analysis.Results The mean age of the 146 participants was 57.6 years old.Of the decision-makers,56.85%were the patients’children.Family-dominated discussions involving other family members were the main decision-making mode(84.93%).Patient participation in the decision-making process was reported in 43.15%of families.The participation of doctors(17.81%)and nurses(2.05%)were reported in a small number of families.The most common reason for choosing the hospice ward was the inability to find any other hospital for the patients(82.19%).The most common ways to learn about the service were neighbors and friends(38.36%)and social media(28.77%).Two themes and six categories emerged from the interviews.The first theme was reasons for choosing hospice wards.The reasons included being unable to care for the patients at home,staying in a hospice ward could reduce the psychological stress for home care,being unable to be admitted into tertiary/secondary hospitals,and thinking a hospice ward was a suitable place for the family.The second theme was the decision process of choosing a hospice ward.This theme included the following two categories,i.e.,ways to learn about the hospice ward and family-discussion decision mode.Conclusion To most families having dying patients,a hospice ward is a reasonable and balanced choice after the families experience huge care stress and practical difficulties.The participation of patients should be encouraged in the family discussion so that their wishes can be known.More efforts will be needed to guide the families with dying patients to make reasonable medical choices.Social media can be a good way to improve public awareness of hospice services in the future.Meanwhile,healthcare providers should be more involved in the decision-making process.

A preliminary study on the application of storytelling among hospice care interest group

Purpose:To explore the effect of storytelling on hospice care learning in the interest group.Methods:Storytelling was used among 7 master of science in nursing(MSN)students in the hospice care interest group.The effect of storytelling was evaluated by the combination of students’reflect diary and the evaluation form.Results:Five themes were extracted from diary including:relieving the suffering of the patients,understanding and respecting patients’choice,communicating,team working,and family supporting.Among 5 items of the evaluation form,there were 4 items which were scored as either agree or strongly agree.Conclusions:Students reflected that the storytelling helped them recognize the importance of relieving the suffering,respecting and understanding,communicating,team working,and family supporting in the hospice care.

A review of the research on music therapy in hospice care

Objective:To summarize the research progress of music therapy in hospice care and to provide reference for further research.Methods:A wide range of literatures on music therapy and hospice care at home and abroad were searched and read,and the literature was integrated,judged,analyzed,and summarized.Results:The related research on music therapy in hospice care mainly focused on western developed countries such as Europe and the United States.China is still in the stage of theoretical exploration,lacking qualitative research based on case investigation and empirical research based on data statistics.Conclusions:Music therapy supports the management of symptoms in hospice care,which can meet the diverse needs of patients and their family members including physical,psychological,social,and spiritual.

A Review of Grief Counselling Practices for Family Members of Oncology Patients in Hospice Care

In cancer patients, especially terminal patients, the family members of the patients will develop more serious sadness and find it difficult to face death rationally, which affects the quality of life and activities. Because of this, in the clinical treatment of oncology patients, strengthening hospice care for family members, doing a good job of death education, assisting them to face and participate in the clinical treatment of oncology in a positive way, and avoiding excessive grief can simultaneously improve the quality of life of patients and their families.

Hospice Care的研究

阐述了临终关怀这一新学科的兴起和发展；探讨了临终关怀的含义与原则；

End of Life Care Medical Education: 48 Hour Hospice Home Immersion Alters Students’ Lives

Introduction: Education and skill enhancement in palliative and end of life care is rarely part of the foundational medical education curriculum. The progress of student physicians tends to be measured by their ability to synthesize and demonstrate basic medical knowledge and clinical skills but offers little assessment of the maturation of attitudes or their values. The University of New England College of Osteopathic Medicine (UNECOM), immerses second year medical students in a hospice home for 48 hours to enhance students’ perspectives in interprofessional palliative and end of life care. Methods: This project utilized qualitative ethnographic and autobiographic research designs. Two female second year medical students (27 y/o & 26 y/o) were immersed for 48 hours into a local hospice home, sleeping in a bed where others had died, to answer the question: “What is it like for ME to live in the Hospice Home for 48 hours and how does this contribute to my future as a practitioner?” Data were collected in the form of journal notes for pre-fieldwork, fieldwork, and post-fieldwork and included subjective and objective reporting of observations, experiences, and patient/family encounters. Analyses included journal review and thematic categorization and coding through content analysis. Results: Themes common to both students that factored in the research question and their prior stated interest areas of medical humanities and person-centered care at end of life were identified. Three themes were selected for this article: 1) Person-Centered Experiences, 2) Spectrum of Communication, and 3) Introspection: Attitudes and Values. The process of living in the hospice home for 48 hours revealed students’ attitudes about various disease processes, their personal experiences with death and dying, and their assumptions about how patients approach death. Conclusion: This Hospice Home Immersion project provided both an educational approach and learning environment that was effective in advancing medical students’ attitudes, skills, and knowledge as evidenced by their self-reported life altering learning about end of life and palliative care.

Contents of Care and Perception of Home Hospice Nurses Who Work at Visiting Medical Treatment Hospitals

Goal: The aim of this study was to examine the perception of nurses who worked at the clinic which proposed home hospice and contents of care to better understand home hospice and enhance home care. Methods: Six nurses who worked at the clinic where proposed visiting medical treatment participated voluntarily. They received one interview for approximately one hour, in which they narrated their perception of home hospice and content of nursing care. The narrative was recorded by an IC recorder and analyzed as contents analysis. This study was approved by the Ethical Board at St. Mary’s College. Results: About the content of nursing care, some categories were selected such as “Understanding a patient as a living person,” “Examining if a patient and caregiver live at ease,” or “Caring for a caregiver accepting a loved one’s death and care given at death.” Nurses perceived the theme as “Time and space for listening carefully,” the theme as “Feeling of responsibility and attractiveness of work,” the theme as the “Economics and manpower to continue home hospice,” the as a “Required connection between hospitals and home hospice clinics.” Conclusion: Visiting medical treatment nurses understand a patient and a family as living people based on intimate relationships, support them as the disease progresses, and connect to a visiting nurse station. They perceived that “patients can enjoy freedom;the nurses had responsibility and strong relationships. They felt the economic or man-power needs to continue and the requirement of a connection between hospitals and home hospice clinics.

以实践为导向构建社区医务人员安宁疗护服务能力评价工具及信效度研究

背景我国安宁疗护服务已进入深度实践时期,许多城市将基层医疗卫生服务机构作为开展安宁疗护的首要场所。社区安宁疗护服务主要为全科团队式服务,但目前尚缺乏切实统一的社区安宁疗护服务人员相关能力考核标准与要求。目的结合社区安宁疗护服务实践,编制社区卫生服务中心医务人员安宁疗护服务能力评价工具,并对其信效度进行研究。方法于2022年6月—2023年3月,通过文献回顾、质性访谈、两轮德尔菲专家咨询进行条目分析,形成安宁疗护服务能力评价工具;于2023-04-01—2023-05-12对上海市浦东新区1281名社区卫生服务中心医务人员开展一般资料、对安宁疗护服务的认知和经历、安宁疗护服务能力评价工具和人文关怀能力量表的问卷调查,检验安宁疗护服务能力评价工具的信度、效度,并采用多元线性回归分析探讨安宁疗护服务能力的影响因素。结果通过文献检索分析和质性访谈形成49个初始条目。德尔菲专家咨询法共邀请上海市15名研究和开展安宁疗护服务的权威专家,其中专家权威系数为0.87,整体指标体系的Kendall和谐系数为0.624(P<0.01),经过两轮德尔菲专家咨询,最终形成具有50个条目的评价工具。问卷调查部分共发放1300份问卷,回收1284份,问卷回收率为98.77%(1284/1300)。安宁疗护服务能力评价工具标准化后的Cronbach'sα系数为0.993,Spearman-Brown折半信度为0.935,总体信度较好。效度检验显示,KMO值为0.987,Bartlett's球形检验值为119119.104,P<0.001,表明该量表效度良好,且适合因子分析。因子分析显示,所有条目的因子载荷系数≥0.4,共同度>0.2,因此保留50个条目。抽取4个公因子,累积方差贡献率为86.517%。相关分析显示,本次构建的安宁疗护服务能力评价工具的总得分和人文关怀量表总分呈显著正相关关系(r=0.819,P<0.001),说明该评价工具具有良好的校标关联效度。多元线性回归分析结果显示,性别、学历、从事社区工作年限、是否经历亲属离世、是否经历安宁疗护培训、安宁疗护服务工作时长、是否愿意从事安宁疗护服务工作是安宁疗护服务能力的影响因素(P<0.05)。结论本研究构建的社区卫生服务中心医务人员安宁疗护服务能力评价工具有较好的科学性和可靠性,信效度较好,可用于评价社区医务人员在安宁疗护服务中的各项能力。

A good death from the perspective of healthcare providers from the internal medicine department in Shanghai:A qualitative study

Objective:This study aimed to explore the understanding of healthcare providers working in the internal medicine department in Shanghai regarding a good death.Methods:The data of the study was collected using face-to-face semi-structured interviews.Through purposive sampling,16 physicians and 13 nurses who had experiences of caring for adult patients with life-threatening illnesses at the end-of-life stage in Shanghai were interviewed.The interviews were analyzed using qualitative content analysis.Results:Six characteristics of a good death emerged:no suffering,companionship and care,no worries or concerns,dying with dignity,involvement and acceptance,and less impact on the family.Eighteen categories were identified:dying without experiencing suffering;being relieved of symptoms and suffering;being relieved of psychological suffering;avoiding the use of futile treatment and resuscita-tion;being cared for and accompanied by family;receiving good health care;having a meaningful life without regrets;making good arrangements for family issues;having a chance to say goodbye;having a quality life before death;dying in a decent environment;the personal will to be respected;maintaining the integrity of the body;death of the patient being accepted by the family and healthcare providers;the death occurred despite the best efforts to care for the patient;limited financial and care burden;shortly affected quality of life of the patient;and improved family cohesion.Conclusion:Family members’early involvement in caring for patients at the end-of-life stage helps achieve a good death.For patients with a terminal illness,avoiding unnecessary medical treatment and resuscitation could be the first step in achieving better patient death and promoting the development of advanced care planning in the mainland of China.

Rational-emotive behavioral intervention helped patients with cancer and their caregivers to manage psychological distress and anxiety symptoms

There is a dearth of evidence-based data on how psychological distress and death anxiety symptoms experienced by cancer patients and caregivers are treated in developing regions. This article sheds light on the report of the findings from a 2016 study that revealed a rational-emotive behavioral intervention helped a select group of cancer patients and their family caregivers to manage problematic assumptions, psychological distress, and death anxiety symptoms in Nigeria.Based on my experience as a co-investigator and corresponding author of this previous study, I addressed the challenges of conducting such a study and the implications for future research in this article. This article encourages future researchers to replicate the study and endeavor to overcome the limitations of the previous study. Funders were also encouraged to ensure increased access to funds for conducting similar studies with cancer patients and their family caregivers in developing countries and other parts of the world.

Value-based Practice:Integration of Cancer Rehabilitation and Palliative Care in Oncology Services

Value-based care model has been evolving to organize medical services around the patient and provide the full cycle of care for a medical condition.The full cycle of care model encompasses inpatient,outpatient,rehabilitation as well as supportive care such as palliative care and nutrition support.Cancer rehabilitation and palliative care have emerged as two important parts of value-based practice for oncology patients.More clinical evidence suggests that early intervention of oncology rehabilitation program and palliative care are likely to improve the patient outcome and reduce the overall medical cost for the patient and his or her family as well as for medical service providers.Although interest has been raised in Chinese oncologists,but effectiveness of incorporating these two services in clinical practices has not been adequately demonstrated.An understanding of scope of cancer rehabilitation and palliative care may help facilitate the integration of both into the oncology care continuum in efforts to improve patients'physical,psychological,cognitive,functional health and quality of life.

Running a Volunteer Program for Palliative Care in a Chinese Hospital:Our Practice and Experience

The establishment and development of volunteer team are very important in the whole process of palliative care.The concept and practice of palliative care have been developed in Peking Union Medical College Hospital(PUMCH)since the end of2012.Great progress has been made in different aspects.Volunteers play an extremely important role in the development of palliative care in PUMCH.The whole work began with the establishment of volunteer teams.This article introduces the process of the establishment and development of palliative care volunteer team in PUMCH,aiming to provide practical references for hospitals in China's Mainland to develop their own palliative care volunteer team.