Palliative care needs of cancer outpatients receiving chemotherapy: an audit of a clinical screening project

Purpose Although more and more cancer patients are receiving chemotherapy in outpatient settings in their advanced stage and could have a broad range of palliative care needs, referral to the specialized palliative care service is often delayed. The primary aim of this study is to explore the usefulness of a combined intervention for cancer patients in identifying patients with underrecognized palliative care needs and referring them to the specialized palliative care service. The intervention consisted of (1) introducing the specialized palliative care service when starting chemotherapy, (2) using screening tools, and (3) providing on-demand specialized palliative care service. Materials and methods All cancer patients newly starting chemotherapy with primary tumor sites of the lung, gastrointestine, pancreas, bile duct, breast, ovary, and uterus were included. As routine practice, at the first instruction about chemotherapy, pharmacists provided information about the role of the specialized palliative care service using a pamphlet and handed out screening questionnaires. Screening questionnaires were distributed at every hospital visit. Treating physicians and/or nurses checked the questionnaire before examining the patients. The patients were referred to the palliative care team, if (1) the patients voluntarily wished for the specialized palliative care service or (2) the treating physicians clinically determined that, on the basis of the screening results, the patients had physical or psychological needs appropriate for referral to the specialized palliative care service. The screening questionnaire included an open-ended question about their greatest concerns, the severity of 11 physical symptoms, overall quality-of-life, the distress thermometer, help for information about the treatment and decision-making, economic problems, nutrition, daily activities, and wish for help from the specialized palliative care service. Results Of 211 patients who newly started chemotherapy, 5 patients refused to complete the questionnaire (compliance rate, 98%). We obtained 1,000 questionnaires from 206 patients. The percentages of missing values ranged from 2.7% to 7.0%. Of 206 patients, 38 (18%) were referred to the palliative care team due to newly recognized problems, in addition to 10 patients with problems well-recognized by primary physicians. The total percentage of patients receiving specialized palliative care service was thus 23% of all patients. Frequently identified problems were oral problems (20%), insomnia (20%), help with information and decision-making (16%), psychological distress defined as the distress thermometer (14%), severe fatigue (9.0%), and severe appetite loss (8.8%). As a whole, problems were identified in half of all questionnaires. Conclusion The combined intervention of introducing the specialized palliative care service, using screening tools and providing on-demand specialized palliative care service, was feasible as part of the routine clinical practice for all cancer patients starting chemotherapy. It might be useful in identifying patients with underrecognized palliative care needs and referring them to the specialized palliative care service at the appropriate time.     

晚期肿瘤患者三级联动安宁疗护模式的构建与应用

目的 构建晚期肿瘤患者医院-社区-居家三级联动安宁疗护模式（以下简称安宁疗护模式）,推进区域安宁疗护协同发展。 方法 在文献研究和专家小组会议的基础上,构建安宁疗护模式初稿,采用德尔菲法,邀请20名安宁疗护专家进行2轮函询,按照专家函询意见对条目进行修改。将构建的安宁疗护模式在10例肿瘤患者中进行初步应用。 结果 2轮问卷有效回收率均为100%。第2轮专家判断系数为0.84,专家熟悉程度系数为0.91,专家权威程度系数为0.93,肯德尔和谐系数为0.086~0.193。最终形成的安宁疗护模式包含7个一级指标（模式目的、实施机构、组织结构及时间界定、岗位职责及要求、服务模式实施途径、核心服务内容、评价与持续改进）、24个二级指标、30个三级指标和19个四级指标。10例肿瘤患者初步应用效果良好。 结论 该研究构建的安宁疗护模式内容全面、科学可靠,可为推动区域内晚期肿瘤患者全程照护服务提供借鉴和参考。     

Estimating the Number of Patients Receiving Specialized Palliative Care Globally in 2017

ContextPalliative care is an emerging health-care service essential for every health-care system. Information on the current status of palliative care service delivery is needed to understand the gap between need for palliative care and current capacity to deliver.ObjectivesTo estimate the number of providers delivering palliative care worldwide and the patients they served in 2017.MethodsEstimates were obtained from a sample of countries from each World Bank income group using typical case purposive sampling methods. Reliable data from the United States and eight additional countries were used for the high-income group. For low- and middle-income countries (LMICs), to determine an estimate of the number of patients served, 30 countries representative of palliative care service delivery in each region and income group were surveyed.ResultsResults from the mapping levels of palliative care development survey identified a total of approximately 25,000 palliative care service delivery teams globally. The total estimate of patients served in 2017 was approximately seven million.ConclusionSignificant disparities in palliative care access exist both by region and income group. The European and Pan-American regions had most while the Eastern Mediterranean, Southeast Asian, and African regions had least. Much more needs to be done to develop and deliver palliative care in LMICs where 80% of the need for palliative care exists. With about 70% of operating palliative care services in high-income countries and only 30% in LMICs, a major effort to develop palliative care in these settings is urgently needed.     

Provider perspectives on palliative care needs at a major teaching hospital

Jericho Metropolitan Hospital (JMH) is a major Australian teaching hospital which lacked a designated palliative care service at the time this study was conducted. A questionnaire addressing palliative care service needs, and educational and support needs of staff, was sent to 267 multi-disciplinary oncology staff at JMH. A response rate of 83% was achieved. Staff identified a number of palliative care needs that were being particularly poorly addressed by existing services. These included: spiritual support, cultural needs, grief and bereavement support, pleasant surroundings, adequate privacy and facilities for families. The majority of respondents identified the following issues as critical problems in palliative care provision: lack of a designated palliative care service, lack of palliative care education of staff, unmanageable caseloads and inadequate physical facilities for the provision of care. Only 24% of respondents reported having had any palliative care education, and 92% of respondents expressed a need for further education. The majority of respondents (79%) expressed a need for improved staff support. There was a significant association between perceived need for improved support and professional discipline (chi2 = 31.33, P < 0.002), with medical staff being significantly less likely than other staff groups to report a need for improved support. Overall, the health providers surveyed identified major deficiencies in the provision of palliative care to cancer patients at JMH and in the palliative care education and support for staff caring for terminally ill cancer patients. The findings support the need for a designated palliative care service at JMH to improve the standard of care of dying cancer patients, and the need for improved palliative care education and support for staff.     

Palliative care for patients with non-malignant disease: will hospital physicians refer?

The objective of this research was to determine whether consultant physicians would consider referring patients with non-malignant disease to a specialist palliative care service, and if so, which patients they would refer. In addition, reasons for referral, expectations of the palliative care team and concerns about the extension of palliative care to non-malignant disease were examined. A postal questionnaire was sent to all 100 consultant physicians, including subspecialities, working in hospitals in south-east Wales, UK. Out of the 100 questionnaires, 78 physicians responded, of whom 94% would consider referring patients with non-malignant disease to a specialist palliative care service. The physicians would be prepared to refer patients with a wide range of conditions, for a variety of reasons. Among the physicians surveyed there was a general enthusiasm for specialist palliative care services to be made available to patients with non-malignant disease. The most appropriate form of service was thought to be a system of shared care and responsibility and this was seen as a means of addressing concerns regarding the lack of disease-specific expertise within the palliative care team.     

The benefits of a hospital-based inpatient palliative care consultation service: preliminary outcome data

This report describes the multiple complementary analytic methods used to create a composite evaluation of the benefits of a hospital-based inpatient palliative care consultation service at Montefiore Medical Center in its preliminary phase. We evaluated data regarding 592 consecutive patients consulted by the palliative care service between November 2000, through March 2002. Standardized medical record reviews indicated that over 90% of interventions recommended by the palliative care team were accepted and acted on by the primary team; audit of the medical records of 368 patients confirmed that pain and other symptoms improved in 87% of patients after palliative care intervention. Ninety-five percent of respondents to a telephone survey of family caregivers described themselves as likely to recommend the service to others. High levels of referring provider satisfaction were evidenced by a Likert- scale provider satisfaction survey and an increase in the rate of referral for palliative care consultation from 2% to 21% of all patients dying at our medical center during the study period. There were also significant reductions in charges for ancillary tests and ventilator charges after palliative care consultation. A matched case control study of mechanically ventilated patients demonstrated significant savings in hospital charges (n = 160 pairs). Length of stay was significantly reduced for patients referred for hospice (n = 112). This type of multifaceted approach is necessary for the evaluation of a service with multiple components that would be difficult to capture with a single analytic approach. This report suggests efficacy of our palliative care service in terms of patient outcomes, provider satisfaction, caregiver satisfaction, and cost savings.     

Hospital referrals to a hospice: timing of referrals, referrers' expectations, and the nature of referral information

Hospital referrals to Mary Potter Hospice were reviewed prior to the implementation of a new hospital palliative care support service. The hospital palliative care service aims to improve the communication between health professionals in the acute hospital and hospice, and to advise the hospital staff on its management of terminally ill patients. The purpose of this review was to provide baseline information that would assist the hospice with the planning and future evaluation of the new service. Information included the timing of the referrals, the type of referral information provided by hospital doctors, and their expectations of hospice care. One fifth of patients were referred near to death. While medical information was nearly always provided on referral, information on the psychological, spiritual and social dimensions of care was often absent. A third of hospital doctors expressed their expectation of the hospice as "to take over" the patient's care. This suggests the hospital palliative care support service should encourage health professionals to take a more active role in caring for dying patients. The findings are discussed in relation to the goals of the new hospital palliative care support service.     

Specialist community palliative care services – a survey of general practitioners' experience in Eastern Sydney

The role of the general practitioner (GP) in providing palliative care in the community is of increasing importance. Concomitantly, there is more interaction between the palliative care support services and the GP. Even when there is input from the palliative care support services, there can be barriers that impede effective delivery of palliative care by the GP. These include poor communication between the GP and the supporting team, inaccessibility of the service and inadequate after-hours coverage. We carried out a postal survey to assess what experiences and perceptions GPs working within the Eastern Sydney Area had of our palliative care support service. The response was generally favourable, with most GPs finding the level of communication, accessibility, usefulness of advice given and degree of follow-up visits by the service to be adequate. However, an important number felt that we tended to over-hospitalise our patients.     

Paediatric palliative care delivered by an adult palliative care service

BACKGROUND: In recent years, the discipline of paediatric palliative care has emerged in response to the awareness of the distinct needs of dying children. To date, in Ireland there is no paediatrician trained in palliative medicine, and specialist paediatric palliative care is generally delivered by adult trained teams. AIMS: We wished to examine the experience of an adult palliative care service providing palliative care to children. Methods: The study entailed three stages: (1) a retrospective chart review of all children referred to the service; (2) a questionnaire survey; and (3) a focus group to explore the views of staff in caring for children. RESULTS: The main themes highlighted were staff competence, staff stress, uncertainty of prognosis, resource implications and co-operation with other teams. CONCLUSION: This study highlights some of the challenges for an adult palliative care team providing paediatric palliative care. Many skills developed for adult patients can be used in paediatric palliative care. Adult palliative care teams and paediatric teams have complementary skills. The challenge is to integrate services to meet the needs of terminally ill children.     

Audit in practice: the referral of dying patients to palliative care

Audit should be an integral part of any palliative care service. Terminal care is a continuum of palliative care. When looking for an objective measure for referrals to a new palliative care service within a specialist cancer hospital in Ireland, patient death was used as an end point. Audits were carried out looking at inpatient deaths during two separate 8-month periods. All inpatient deaths during the study periods were noted and records compared to find those who were referred to the palliative care service before death. The first audit revealed that relatively few dying patients were referred to the newly formed palliative care team; by the time the second audit was carried out, referrals had increased. For many patients their final hospital admission was for active anti-cancer treatment and was of short duration. Data from these audits were presented on several different occasions to both nursing and medical staff. This article describes these audits in detail and highlights some of the issues raised. Audit in palliative care is discussed.     

Impact of a hospital palliative care service: perspective of the hospital staff

The first New Zealand hospital palliative care support service was established in 1985. Different service models have now been adopted by various major hospitals. In 1998, a palliative care service, funded by Mary Potter Hospice, was piloted at Wellington Public Hospital. Twelve months post-implementation, the hospital staff's views of the service were evaluated. It was found that referrals to palliative care from hospital specialities outside the Cancer Centre increased. While most doctors, nurses and social workers strongly agreed or agreed that the service positively influenced patients' care and effectively addressed their symptom management needs, spiritual needs were less often met. Over 90 percent of each discipline strongly agreed or agreed that the service had assisted them in caring for patients, but, only about a half agreed that useful discharge planning advice and staff support was provided. Significant differences in responses were found between different disciplines and specialities. One fifth of the staff identified palliative care education needs. Recommendations are made concerning the development of a future hospital palliative care service.     

Assessing palliative care needs: views of patients, informal carers and healthcare professionals

AIM: This paper reports a study to assess the palliative care needs of the adult population served by a healthcare provider organization in Northern Ireland from the perspectives of patients, informal carers and healthcare providers. BACKGROUND: Assessing palliative care need is a key factor for health service planning. Traditionally, palliative care has been associated with end-of-life care and cancer. More recently, the concept has been extended to include care for both cancer and non-cancer populations. Various approaches have been advocated for assessing need, including the exploration of professional provider and user perspectives of need. METHOD: Semi-structured qualitative interviews were undertaken with a purposive sample of patients and lay carers receiving palliative care services (n = 24). Focus groups were also conducted with multi-professional palliative care providers (n = 52 participants) and face to face interviews were undertaken with key managerial stakeholders in the area (n = 7). The focus groups and interviews concentrated on assessment of palliative care need. All the interviews were transcribed verbatim and analysed using Burnard's framework. FINDINGS: Professional providers experienced difficulty in defining the term palliative care. Difficulties in communication and information exchange, and fragmented co-ordination between services were identified. The main areas of need identified by all participants were social and psychological support; financial concerns; and the need for choice and information. All participants considered that there was inequity between palliative care service provision for patients with cancer and non-cancer diseases. CONCLUSION: All patients, regardless of diagnosis, should be able to access palliative care appropriate to their individual needs. For this to happen in practice, an integrated approach to palliative care is essential. The study methodology confirms the value of developing a comprehensive approach to assessing palliative care need.     

The experience of transition to palliative care services: perspectives of patients and nurses

The care of patients whose illnesses cannot be cured places many stresses on health professionals (both generalist and specialist), and more importantly on patients and families. The complexities for all concerned in the process of referral to palliative care services should not be underestimated, however there is evidence that the referral process could be better handled by all health professionals. With greater understanding of the dynamics of care, the crisis of living with an incurable illness and dying can be lessened for patients. This article reports on a qualitative research project undertaken at a large metropolitan palliative care service and its referring public hospital. Patients and nurses were interviewed to identify issues relating to the care of patients and families newly referred to palliative care. The findings of this research identify themes in relation to the transition of patients from acute curative to palliative care services, e.g. pace and timing of the transition, fear and (mis)understanding, accepting palliative care, information and education on palliative care, and peer support and supervision for palliative care nurses.     

Improving palliative care provision for patients with heart failure

In the last 14 years, research has identified that patients with heart failure suffer symptoms as severe as people with cancer and would greatly benefit from a palliative care approach. In spite of this fact, it is recognized within the National Service Framework for Heart Failure (Department of Health (DoH), 2000b) and the Cancer Plan (DoH, 2000a) that service provision from a palliative care perspective remains inadequate. In order to address the palliative care needs for patients with heart failure and their families a multidisciplinary team approach between primary and secondary care is needed. This article will review the literature relating to improvement of services from a palliative care perspective. It discusses the quality of life experienced by patients with heart failure and their families and the barriers to providing a palliative care approach from a multidisciplinary team perspective. Finally, it attempts to present future recommendations to develop a structured service provision.     

晚期癌症患者居家姑息照护服务影响因素的质性研究

目的 深入了解晚期癌症患者居家姑息照护服务现状及其影响因素,为规范发展居家姑息照护服务提供参考.方法 采用现象学研究方法,对10名社区卫生服务中心的医护人员进行非结构访谈,用现象学分析法进行资料分析.结果:社区卫生服务中心为晚期癌症患者开展定期随访、家庭病床、临时出诊等居家姑息服护服务,有待进一步拓展与完善;归纳影响居家姑息照护服务开展的3个主题为政策环境因素、服务供方因素、服务需方因素.结论:居家姑息照护服务的开展需要政策支持,完善杜区卫生服务和提高公众信任与理解.     

Palliative care for patients with heart failure: description of a service

Over the past 10 years, there has been an increasing demand for heart failure patients to have access to palliative care services. The concerns of this group have been highlighted and there is growing recognition in national palliative care and cardiology bodies that these concerns should be addressed. In spite of this, there is little improvement. There are concerns about the acceptability of hospice services to heart failure patients, worries about service overload, lack of appropriate knowledge and skills and difficulty in knowing when to refer a heart failure patient for palliative care. In Scarborough, a joint approach by a cardiologist and palliative care physician was set up in September 2000. This paper describes the service so far in an attempt to address some of the above reservations and to provide a catalyst and encouragement to others beginning a similar venture.     

Changes in symptoms and pain intensity of cancer patients after enrollment in palliative care at home

This study describes the activities and interventions carried out by an at-home palliative care team treating cancer patients who died within two years of being enrolled in a palliative care program. It analyzes which changes in symptoms and pain occurred and which sociodemographic and medical characteristics were related to these changes. The analysis is based on 102 cancer patients. Data were collected through systematic registration during the palliative care process. At enrollment, patients were interviewed by the coordinating general practitioner concerning their sociodemographic background, medical history, psychological status, and symptoms. During the palliative care process, symptoms and functioning of the patients were recorded by the physician and nurses. The results show that cancer patients enrolled in palliative care at home have many symptoms, often associated with metastatic disease and comorbidities. The palliative care teams delivered frequent and various interventions. The number of symptoms decreased considerably, as did pain intensity and the intensity of other symptoms. Patients living in urban areas and with low income particularly benefited from a reduction in the number of symptoms they displayed. Cancer patients who needed palliative care benefited significantly from this at-home palliative care service.     

香港纾缓护理的发展及其启示

中国内地的纾缓护理目前正处于起步阶段,由于不能完全套用欧美国家的已有方法,现在尚缺乏固定的服务模式。与中国内地相比,香港的纾缓护理服务与管理比较完善。本文对香港纾缓护理服务的理念、开展形式、工作内容等进行了总结,借鉴香港已有的经验,思考对中国内地开展纾缓护理的启示作用。     

Specialist palliative care for patients with non-cancer diagnosis

All patients with palliative care needs should receive an equitable service, and there is evidence to suggest that patients with life-limiting illnesses other than cancer would benefit from specialist palliative care services. The author discusses how this might be achieved and the barriers that exist to prevent it happening.