我国临终关怀准入标准界定的质性研究

目的了解临终关怀实施者、管理者及研究者对临终关怀准入的看法,界定我国临终关怀准入标准。方法采用焦点小组访谈法进行访谈,采用主题分析法整理分析资料。结果提炼出的主题有以预后为基础的准入为主,结合考虑以需求为基础的准入;增加限定条件“对临床根治治疗不获益”;可以考虑缩短准入患者预计生存期的时间;临终关怀准入应先从肿瘤患者入手;可将准入标准的评价指标细化;专业临终关怀机构可作为其他服务的中转站。结论应参考以预后为基础的准入,制定我国临终关怀准入标准。今后随着临终关怀机构的发展扩大,此标准可进一步修订。     

Hospice care delivered at home, in nursing homes and in dedicated hospice facilities: A systematic review of quantitative and qualitative evidence

Background

Hospice care supports patients and their families physically and emotionally through the dying phase. In many countries a substantial portion of specialised end-of-life care is provided through hospices. Such care has developed outside of general healthcare and is commonly provided in a patient's home or in dedicated facilities. Hospice provision may need to increase in the future due to an ageing population with a greater need for access to end-of-life care.

Objectives

In this systematic review we sought to identify the current evidence on (1) the effectiveness, including cost-effectiveness, of hospices, and hospice care in a patient's home and in nursing homes and (2) the experiences of those who use and of those who provide such services.

Methods

We included quantitative and qualitative studies on hospice care that was provided in a patient's home, nursing home or hospice. We did not include studies on end-of-life care that was provided as part of general healthcare provision, such as by general practitioners in primary care, community nurses or within general hospitals. For quantitative evaluations we included only those that compared hospice care with usual generalist healthcare.The databases CINAHL, MEDLINE, EMBASE, and The Cochrane Library were searched from 2003 to 2009. Evidence was assessed for quality and data extractions double-checked. For quantitative studies we present the outcome data comparing hospice versus usual care. For qualitative evaluations we organise findings thematically.

Findings

Eighteen comparative evaluations and four thematic papers were identified. Quantitative evidence, mostly of limited quality in design, showed that hospice care at home reduced general health care use and increased family and patient satisfaction with care. Main themes in the qualitative literature revealed that home hospice services support families to sustain patient care at home and hospice day care services generate for the patient a renewed sense of meaning and purpose.

Conclusions

Although studies had methodological limitations, in this review we found much evidence to support the benefits of hospice care. There were limited evaluations found on the impact of hospice care on psychological well-being, such as symptoms of depression, and on inpatient hospice care and non-hospital related costs.     

护生在临床安宁照护情境中的体验

目的探索护生在临床安宁照护情境中的现场体验,了解其真实感受,分析其中情况及成因,找寻规律和差异,总结经验,形成较有价值的理论,指导护理教育的课程改革与实践。方法采用质性研究的方法,通过分项目记录、观察及半结构访谈工具收集护生在疼痛、死亡等情境中的现场体验资料,同步分析、归纳、推理,最终形成理论。结果护生的情绪与病人 (家属)的信任关系有关；护生在安宁照护情境中受到死亡价值观的冲突和影响；护生进入安宁照护情境前需要培训和支持；综合医院安宁照护现状不甚理想。结论需高度关注护生的人文关怀精神和同理心的培育；综合医院安宁照护工作需要被关注和研究；安宁照护需要社会整体环境的支持。     

三级医院院内缓和医疗会诊服务实践探讨

在缓和医疗理念逐渐为更多人知晓的时候,各级医疗机构如何将这个一理念顺利引入实践是很多医护人员迫切关注的问题.笔者结合自己在三级综合医院的实践,分析了开展院内缓和医疗会诊所需具备的条件和遇到的困难,希望能够为临床实践提供借鉴和参考.     

Timing of palliative care team referrals for inpatients receiving rapid response services: A retrospective pilot study in a US hospital

Background/objectivesResearch indicates up to one-third of rapid response team calls relate to end-of-life symptoms. The CriSTAL criteria were developed as a screening tool to identify high risk of death within three months. The primary purpose of this pilot study was to investigate the timing of palliative care referrals in patients receiving rapid response team services, and patients’ CriSTAL criteria score on admission. The potential feasibility of using the CriSTAL tool to stimulate earlier Palliative Care Team (PCT) referral served as an underlying goal, and investigation of a relationship between specific CriSTAL criteria and the prediction of in-hospital death was a secondary objective.DesignA retrospective chart review of rapid response calls made in 2015 was used to identify patient risk of death on admission based on the CriSTAL criteria. The presence and timing of PCT referral as well as patient survival status to hospital discharge were documented for comparison.Setting/participantsA sample of 183 charts from 584 inpatients involved in over 600 RRT events recorded in 2015. The study was undertaken in a 676-bed teaching hospital in the Midwestern U.S.Methods/resultsNinety-one patients died during the hospital stay while 92 patients from the 493 individuals who survived were randomly selected for full analysis. Applying CriSTAL criteria to the 141 individuals aged 50 years or older indicated that frailty (OR = 1.43, 95%CI 1.08–1.89, p = 0.012), being a male (OR = 3.14; 95%CI 1.40–7.05, p = 0.006), and the presence of two or more comorbidities (OR = 3.71, 95%CI 1.67–8.24, p = 0.001) were the most significant predictors of in-hospital death after adjusting for age. A CriSTAL score of 6 was the optimal cut-off for high-risk of in-hospital death. Palliative care consultations within the high-risk population occurred for 45.2% of the deceased and 40.4% of the survivors. Consultation often occurred within two days of the RRT event and many patients (46.8%) died within one day of the consultation.ConclusionA positive relationship was found between the CriSTAL score, palliative care referral, and in-hospital mortality in patients who received RRT services. The study indicates a need for earlier PCT referral, showcases the potential to identify high risk of in-hospital death upon admission and supports the feasibility of using the CriSTAL criteria tool to encourage earlier PCT referrals.     

Ethical dilemmas in hospice and palliative care

In order to understand some of the ethical dilemmas that face hospice programs in the United States, one must understand the Medicare Hospice Benefit, which is the model by which hospice programs provide palliative care to terminally ill patients in the United States. Unlike palliative care programs outside the United States, patients must have a prognosis of 6 months or less to receive hospice care under the Medicare Hospice Benefit. Care is reimbursed on a per diem basis, and inpatient care is restricted to pain and symptom management that cannot be managed in another setting. Ethical dilemmas that face physicians referring patients to hospice programs include the ability of clinicians to predict accurately a patient prognosis of 6 months or less, and to what extent hospice programs and clinicians are obligated to provide patients with full information about their illness, as the Medicare Hospice Benefit requires that patients sign an informed consent in order to elect the hospice benefit. There are ethical dilemmas that affect day-to-day patient management in palliative care programs including physician concern over the use of morphine because of possible respiratory depression in the advanced cancer patient, the question of providing enteral or parenteral nutritional support to patients who refuse to eat near the end of life, and the question of providing parenteral fluids to patients who are unable to take fluids during the terminal phases of illness. A final ethical dilemma concerns the methodology for quality of life research in palliative care. By following current research dogma, and only considering patient-generated data as valid, the patient population that most needs to be studied is excluded. A new methodology specifically for palliative care research is needed to provide information on the patients who are cognitively or physically impaired and unable to provide input regarding their needs near the end of life.Presented as an invited lecture at the 6th International Symposium: Supportive Care in Cancer, New Orleans, La., USA, 2–5 March 1994     

Mitigating opioid errors in inpatient palliative care: A qualitative study

BackgroundOpioids are a high-risk medicine used in high doses and volumes in specialist palliative care inpatient services to manage palliative patients’ pain and other symptoms. Despite the high volume of opioid use in this care setting, serious errors with opioids are exceedingly rare. However, little is known about the factors that mitigate opioid errors in specialist palliative care inpatient services.AimTo explore palliative care clinicians’ perceptions of factors that mitigate opioid errors in specialist palliative care inpatient services.Methods and designA qualitative study using focus groups and semi-structured interviews.Participants and settingRegistered nurses, doctors, and/or pharmacists (‘clinicians’) who were involved with and/or had oversight of the services’ opioid delivery and/or opioid quality and safety processes, employed by one of three specialist palliative care inpatient services in metropolitan NSW.FindingsFifty-eight participants took part in this study, three-quarters (76%) of which were palliative care nurses. A positive opioid safety culture was central to mitigating opioid errors in specialist palliative care inpatient services. This culture of opioid safety was founded on clear and consistent safety messages from leadership, clinicians empowered to work together and practise safely, and a non-punitive approach to errors when they occurred. The clinical nurse educator was seen as pivotal to shaping, driving and reinforcing safe opioid delivery practices across the palliative care service.ConclusionCreating and sustaining a positive opioid safety culture, and promoting a non-punitive approach to opioid error and reporting, is essential to mitigating opioid errors in the specialist palliative care inpatient setting.     

Family centred neonatal palliative care in children's hospices: A qualitative study of parents' experiences

Since 1982, children's hospices in the UK have provided services where families can care for their children at the end of life (EOL) in a less medicalised environment. More recently, the services of many children's hospices have extended to newborn babies and their families. This paper explores the experiences of three families (five parents) who availed of children's hospices services when their babies required a palliative approach to care. Early diagnosis of a life-limiting condition in pregnancy allowed advanced care planning and enabled parental participation in decision-making before birth. A homely environment, as well as constant support and a sensitive approach from expert staff encouraged parental involvement in all aspects of their baby's care whilst in hospice. Extended time with their baby after death enabled parents to feel connected with their infant. The holistic and family-centred approach to care from children's hospices is highly valued by parents of newborn babies.     

Pulse oximetry in supportive and palliative care

Pulse oximetry is a valuable, non-invasive method used for estimating oxyhaemoglobin saturation. It can give a bedside indication of the oxygenation and thus provide a valuable insight into the cause of breathlessness. Its use can help palliative care teams to determine the need to prescribe or to withhold oxygen therapy. The technology is well established and relatively inexpensive. Factors that influence readings include low perfusion states at the end of life. With a thorough understanding of its uses and limitations, pulse oximetry can assist multi-disciplinary teams in providing better care to ill patients in the palliative care setting.     

Existential concerns of terminally ill cancer patients receiving specialized palliative care in Japan

Background Although alleviation of existential distress is important for terminally ill cancer patients, the concept of existential distress has not been fully understood. The aim of this study was to categorize existential concerns of Japanese terminally ill cancer patients and explore care strategies based on the categorizations.Methods A multicenter cross-sectional study in 88 terminally ill cancer patients receiving specialized inpatient palliative care was performed. The nurses explored patient existential concerns by asking several key questions, and recorded the answers that they considered typically described the patients concerns. All statements recorded by the nurses were analyzed using content analysis methods.Results A total of 89 statements were subjected to analysis. The categories and their prevalence were: relationship-related concerns (22%; isolation, concerns about family preparation, conflicts in relationship), loss of control (16%; physical control, cognitive control, control over future), burden on others (4.5%), loss of continuity (10%; loss of role, loss of enjoyable activity, loss of being oneself), uncompleted life task (6.8%), hope/hopelessness (17%), and acceptance/preparation (25%).Conclusions Existential concerns of Japanese terminally ill cancer patients were categorized as relationship-related concerns, loss of control, burden on others, loss of continuity, uncompleted life task, hope/hopelessness, and acceptance/preparation. These themes seemed to encompass universal human suffering beyond cultural differences, and this conceptualization may contribute to the development of effective therapeutic interventions to alleviate existential distress.This is work is presented on behalf of the Japan Pain, Rehabilitation, Palliative Medicine, and Psycho-Oncology (J-PRPP) Study Group.The study was supported by Health and Labor Sciences Research Grants, Clinical Research for Evidenced Based Medicine (2002).     

Supportive palliative treatment,psychological care and the hospice movement in Hungary

The authors summarize the developments that have taken place in supportive care in Hungary over the past 20 years. Special emphasis is put on psychological care and care for the terminally ill.     

Examining the needs of survivors of critical illness through the lens of palliative care: A qualitative study of survivor experiences

ObjectiveTo examine the needs of adult survivors of critical illness through a lens of palliative care.Research methodologyA qualitative study of adult survivors of critical illness using semi-structured interviews and framework analysis.SettingParticipants were recruited from the post-intensive care unit clinic of a mid-Atlantic academic medical center in the United States.FindingsSeventeen survivors of critical illness aged 34–80 (median, 66) participated in the study. The majority of patients were female (64.7 %, n = 11) with a median length of index ICU stay of 12 days (interquartile range [IQR] 8–19). Interviews were conducted February to March 2021 and occurred a median of 20 months following the index intensive care stay (range, 13–33 months). We identified six key themes which align with palliative care principles: 1) persistent symptom burden; 2) critical illness as a life-altering experience; 3) spiritual changes and significance; 4) interpreting/managing the survivor experience; 5) feelings of loss and burden; and 6) social support needs.ConclusionOur findings suggest that palliative care components such as symptom management, goals of care discussions, care coordination, and spiritual and social support may assist in the assessment and treatment of survivors of critical illness.     

Communication of the death of a patient in hospices and nursing homes: A qualitative study

Purpose of the researchAnnouncing the death of a patient to another in hospices and nursing homes (NH) requires special skills, especially when the recipient is another resident. The aim of this study is to describe how hospice and NH staff deal with the communication regarding a patient's death, if this communication is perceived as a problem, and strategies implemented.Methods and sampleThe 55 health care workers (HCWs, 26 nurses and 29 auxiliary nurses) of two NHs and two hospices in Turin (Italy) were interviewed with a semi-structured interview exploring the residents' perception of need to receiving information on another patient's death, the experiences of having given this information in the last 6 months, and the strategies implemented. The interviews were analyzed using Colaizzi's method and researchers looked for the main themes and related subthemes.Key resultsSix themes were identified and grouped into 2 main themes: a. the choice to tell the truth or not, which may be influenced by: the patients' request for confirmation of the fate of the other resident, by patients' fear of death (“I will be next”), the relationships among the guests, and personal and group experiences; b. the need to share own feelings and the burden of deciding whether or not to inform the other residents and how to go about this.ConclusionsIf a structured discussion of experiences and reflection on cases is not implemented, HCWs may limit communication to bare information, lies, and adopt behaviors of avoidance and concealment.     

护士姑息护理态度及其影响因素的质性研究

目的 了解护士照顾中晚期患者的态度及其影响因素.方法 采用质性研究中现象学分析法对8例个案进行深度访谈.结果 护士照顾中晚期患者态度的影响因素主要有4个方面:护士的各种不良情绪;不完善的医疗制度;专业机构和专业标准的缺乏;护士的工作特点.结论 今后应加强护士应对不良情绪的培训、死亡教育及同理心的培育;尽力争取社会支持,改善医疗保险制度;制定与姑息护理相配套的规范和标准;多形式、多渠道建立姑息护理机构;减轻护士工作负担,逐步提高护士的福利待遇.     

护士姑息护理态度及其影响因素的质性研究

目的了解护士照顾中晚期患者的态度及其影响因素。方法采用质性研究中现象学分析法对8例个案进行深度访谈。结果护士照顾中晚期患者态度的影响因素主要有4个方面：护士的各种不良情绪;不完善的医疗制度;专业机构和专业标准的缺乏;护士的工作特点。结论今后应加强护士应对不良情绪的培训、死亡教育及同理心的培育;尽力争取社会支持,改善医疗保险制度;制定与姑息护理相配套的规范和标准;多形式、多渠道建立姑息护理机构;减轻护士工作负担,逐步提高护士的福利待遇。     

“There won‘t’ be anything else…it's over”: Perceptions of women referred to palliative care only

BackgroundIt is not well-known how women with advanced breast and gynecological cancers cope with the transition to palliative care (PC) only, but we anticipate that this is a challenging situation for them.ObjectiveTo investigate women's understanding on the reasons of anticancer treatment withdrawal, their ideas about PC, and also perceptions of the communication of bad news.MethodTwenty women were interviewed by a single researcher after being informed that their antineoplastic treatment would be discontinued and they would be exclusively monitored by PC staff. The interviews were audiotaped, transcribed verbatim, and analyzed according to content analysis.ResultsThree categories were identified in the participants' narratives: (1) an understanding of the meaning of PC; (2) a lack of understanding of the shift in treatment and follow-up; (3) differing perspectives about hope. The PC Unit was stigmatized as a place to die, resulting in a “place to die” subcategory. The narratives of the participants who previously had experienced PC converged on a subcategory that reveals better recognition of the importance of the PC Unit as “a place that enhances the quality of life”.ConclusionThe participants manifested little knowledge about PC and the forthcoming strategies for their clinical follow-up. In addition, the PC Unit was patently stigmatized as a place to die. Early referral to PC seems to be associated with a less painful therapeutic transition, based on more accurate knowledge of the importance of PC.     

应用透析登记系统对维持性血液透析患者临终前终止透析治疗的现况调查

目的 回顾性调查维持性血液透析患者临终前是否终止透析治疗及原因,与相应支持治疗情况.方法 应用上海市透析登记系统及原始存档病历收集1998.1.1至2012.12.31期间在上海交通大学医学院附属仁济医院浦西血液透析中心所有死亡血液透析患者.比较提前终止透析与未终止透析患者性别、年龄、透析龄、原发病、死亡原因等情况,并对提前终止血液透析患者的终止原因及支持治疗进行分析.结果 共收集维持性血液透析死亡患者115例,年龄64.6± 14.2岁,中位透析龄5.4（0.3～21）年,其中男性69例,占60％.原发病前3位分别是：慢性肾小球肾炎（27.8％）、高血压肾硬化（23.5％）、糖尿病肾病（12.2％）.死亡原因以脑血管意外（39.1％）、感染（15.7％）、心血管事件（10.4％）、猝死（8.7％）和晚期肿瘤（8.7％）为主.共9例（8％）提前终止透析患者,其中男性7例（77.8％）,女性2例（22.2％）,终止透析后中位存活天数为8.1天.终止透析原因：4例因晚期肿瘤恶液质终止透析,1例为严重感染,1例为脑血管意外,1例为技术原因无法继续给予肾替代治疗,另2例因经济因素患者本人要求终止透析.9例患者均给予相应的支持治疗措施. 结论 透析登记系统是了解临终期血液透析患者终止透析治疗的有效工具.上海交通大学医学院附属仁济医院浦西血液透析中心数据显示8％的临终患者选择了终止透析,远低于发达国家,提前终止透析组以晚期肿瘤为主要死亡原因.