背景：安宁疗护是一种提升临终患者生活质量的有效手段。然而，临终患者及家属的安宁疗护需求仍未得到充分满足。我国现有安宁疗护服务政策多强调服务提供方的发展，医护人员提供的服务难以满足患者及家庭的安宁疗护需求。本研究旨在了解临终患者及家庭的安宁疗护需求，调查我国安宁疗护服务开展现状与存在问题，初步分析我国安宁疗护服务供给与临终患者及家属安宁疗护服务需求间的供需差异。以期为我国发展“需求导向”的安宁疗护服务提供现实依据。

目的：描述我国临终患者及家属对安宁疗护服务的需求，描述我国安宁疗护实践现状及存在问题，初步分析我国安宁疗护服务的供需差异。

方法：本研究为非实验性描述性研究。1.采用问卷调查法调查临终患者安宁疗护需求。2024年4月至10月，采用便利抽样方法，在北京协和医院、清华大学长庚医院、北京隆福医院、中山大学附属第七医院、佛山市第一人民医院、北京市德胜社区卫生服务中心符合入选标准的临终患者，采用刘小成等修订的中文版安宁疗护问题与需求问卷对临终患者安宁疗护需求进行调查。2.采用访谈法对临终患者、家属进行访谈，深入了解临终患者及家属的安宁疗护需求满足情况。采用访谈法对医疗机构安宁疗护相关管理人员及临床医护人员进行访谈，深入了解安宁疗护服务内容与实践现状，调查目前安宁疗护服务存在的问题。3.运用参与式观察法对安宁疗护实践过程以及服务内容进行观察。

结果：1.临终患者安宁疗护需求：（1）共纳入243例患者进行问卷调查，安宁疗护问题总得分为15.00（7.00，29.00）分，处于中等水平，安宁疗护需求总得分为11.00（6.00，21.00）分，处于较低水平。（2）共访谈7名临终患者。采用Nvivo软件对访谈内容进行编码，分析得出临终患者未满足需求、疾病认知与态度、家庭角色、治疗困境与存在问题四大核心主题。2.临终患者家属的安宁疗护需求：共访谈10名临终患者家属。分析得出已接受的安宁疗护服务、临终患者家属未满足需求、家属角色、照顾者负担和照护困难四大核心主题。3.安宁疗护服务内容和实践现状：（1）共访谈7名安宁疗护临床医务人员和管理者。分析得出医护人员提供的安宁疗护服务、安宁疗护实施存在问题、患者及家属未满足需求四大核心主题。（2）共整理完成14份基于参与式观察法的观察日志，并对收集到的资料进行了系统分析、归纳与总结，形成了生理症状管理与舒适护理、心理支持与情绪陪伴、精神关怀与信仰尊重、家属支持与教育、环境优化、延续性照护六个与安宁疗护照护服务相关的内容类属。

结论：临终患者安宁疗护问题处于中等水平，安宁疗护需求处于较低水平。需求主要集中在症状控制、心理支持、医患沟通、病情告知方面。临终患者家属的安宁疗护需求主要集中在需要专业照护指导和心理支持方面。目前我国安宁疗护实践存在问题及供需差异的原因有服务体系衔接不畅、缺乏统一转诊标准、医疗资源分布不均、专业人员能力缺乏以及培训不足等问题。因此，要提升我国安宁疗护服务质量并弥合供需差距，亟需加强服务体系间协作、制定统一转诊规范、优化医疗资源布局、提升专业人员能力并完善相关培训体系。

Background: Hospice care is an effective approach to improving the quality of life for patients at the end of life. However, the hospice care needs of terminally ill patients and their families remain inadequately addressed. Existing hospice care policies in China primarily emphasize the development of service providers, while the services offered by healthcare professionals often fall short of meeting the actual needs of patients and their families. This study aims to explore the hospice care needs of terminally ill patients and their families, investigate the current status and challenges of hospice care services in China, and conduct a preliminary analysis of the supply-demand gap between the available services and the needs of patients and their families. The goal is to provide empirical evidence to support the development of demand-oriented hospice care services in China.

Objective: To describe the hospice care needs of terminally ill patients and their families in China, to examine the current practice and existing issues of hospice care services, and to preliminarily analyze the mismatch between supply and demand in hospice care.

Methods: This is a non-experimental descriptive study. 1.A questionnaire survey was conducted to assess the hospice care needs of terminally ill patients. From April to October 2024, a convenience sampling method was used to recruit eligible terminally ill patients from Peking Union Medical College Hospital, Tsinghua Changgung Hospital, Beijing Longfu Hospital, The Seventh Affiliated Hospital of Sun Yat-sen University, Foshan First People's Hospital, and Desheng Community Health Service Center. The Chinese version of the Hospice Care Problems and Needs Questionnaire, revised by Liu Xiaocheng et al., was used for data collection. 2.Semi-structured interviews were conducted with terminally ill patients and their families to gain an in-depth understanding of whether their hospice care needs were being met. Additionally, hospice care administrators and clinical healthcare professionals were interviewed to explore the contents and current practice of hospice services, as well as existing challenges. 3.Participant observation was used to observe the hospice care process and service content.

Results: A total of 243 terminally ill patients completed the questionnaire. The median score for hospice care issues was 15.00 (7.00, 29.00), indicating a moderate level, while the median score for hospice care needs was 11.00 (6.00, 21.00), reflecting a relatively low level. Interviews with seven patients revealed four major themes: unmet needs, perceptions and attitudes toward illness, family roles, and treatment dilemmas, the interview data were coded using NVivo software. Ten family caregivers were interviewed, the interview data were coded using NVivo software, yielding four core themes: received hospice services, unmet needs, caregiving roles, and caregiver burden and challenges. Seven hospice care providers and managers were interviewed, the interview data were coded using NVivo software,  and analysis identified four themes: services provided, implementation challenges, and unmet needs of patients and families. Additionally, fourteen observation logs were analyzed, revealing six categories of hospice care services: symptom management and comfort care, psychological support, spiritual care, family education and support, environmental optimization, and continuity of care.

Conclusion: Terminally ill patients demonstrated a moderate level of hospice care issues and a relatively low level of hospice care needs. Their primary needs centered on symptom control, psychological support, communication with medical staff, and disclosure of illness. Family members mainly needed professional caregiving guidance and psychological support. The current challenges in hospice care practice and the causes of the supply-demand gap in China can be summarized as follows: (1) poor coordination across service systems, with an absence of standardized referral protocols; (2) uneven distribution of medical resources, particularly the limited capacity and insufficient resources of primary healthcare institutions; (3) inadequate knowledge and competencies among hospice care professionals, especially in areas such as psychological support, communication, and humanistic care; and (4) a lack of systematic training and evaluation mechanisms for healthcare providers.