The challenges in adopting care pathways for the dying for use in care homes

An increasing number of older people are requiring palliative care within the care home setting. There are currently a number of initiatives that are generally gaining approval and being implemented within health care in general with the goal of improving standards of palliative care. These are the Integrated Care Pathway for the dying person, the Gold Standards Framework and the Preferred Place of Care document. The Liverpool Care Pathway is being used across a wide range of care settings to improve care in the last 24–48 hours of life and is being implemented in care homes as part of a national rollout programme. This article aims to explore some of the issues associated with the use of the care pathways in care homes, particularly without the input of additional resources and support for the care homes. It also questions the appropriateness of the pathway in its current format without further work on the specific palliative care needs of the residents dying in care homes.     

Simultaneous care: a model approach to the perceived conflict between investigational therapy and palliative care

Clinical trials of investigational therapy in patients with advanced cancer may not pay sufficient attention to quality of life (QOL) and supportive care issues, resulting in an adverse impact on the quality of care (QOC). We hypothesized that the simultaneous delivery of investigational therapy and a structured program of supportive care would result in measurable improvements in predefined outcomes without adverse events for patients, caregivers, or the physician/patient interaction. This report describes the findings of a trial designed to test the feasibility and initial results of such an approach. Forty-four patients accrued to Phase I or Phase II investigational therapy trials were simultaneously enrolled into a defined home care program focused on supportive care needs of the patient and family, as well as assessment of the toxicities of investigational therapy. These 44 patients constitute the Simultaneous Care (SC) cohort. Twenty patients receiving investigational therapy and the standard supportive care measures available through the Cancer Center served as a control group, designated the Usual Care (UC) cohort. We measured QOL using baseline and monthly assessments of the Functional Assessment of Cancer Therapy (FACT-G) instrument. This instrument measures four domains of well-being: physical, emotional, functional, and social/family. We prospectively defined QOC as: the percentage of hospice referrals; hospice length of stay; and number of cycles of chemotherapy administered. A summary score for the four FACT domains at each time point for each patient was calculated (FACT 4). The FACT 4 scores of the SC group improved compared to the UC group but did not reach a significant difference. Individual scores reflected a wide range of psychometric variability. A statistically significant difference in referral to hospice was seen in the SC group (35/44) compared to the UC group (8/15) (P = 0.034). The median length of stay in hospice was the same for both cohorts but the mean stay was greater in the SC cohort (54 days) compared to the UC cohort (37 days). The mean number of chemotherapy cycles was not different between SC and UC (P = 0.25). The self-reported acceptance by patients, caregivers, physicians and Cancer Center support staff was qualitatively excellent. Patients with advanced cancer at the time of enrollment onto investigational therapy should have made an explicit transition to palliative care goals but often have not. In the current health care environment, patients with advanced cancer without curative potential may be forced by their health provider or health insurer to choose between disease-directed therapy (including investigational therapy) or structured best supportive care programs. In this emerging era of targeted therapies, SC provides an approach designed to optimize palliative care goals while supporting the clinical research mission of offering patients with advanced cancer new and potentially better therapeutic interventions. SC is a system of care that enhances patient choice by allowing patients and families to have concurrent access to two beneficial options. SC may enhance coordination of care and facilitate patients' explicit transition from curative intent to palliative intent. In order to validate this approach, a randomized comparative trial evaluating SC has been initiated.     

Supporting cancer patients with palliative care needs: district nurses' role perceptions

The aim of this study was to examine UK district nurses' perceptions of their role in supporting palliative care cancer patients. Patients with cancer are living longer with the disease. District nurses are the largest UK workforce caring for people with cancer at home, the preferred place of care. Meeting patients' supportive and palliative care needs is complex. Little is known about district nurses' supportive role in the early phase of palliative care. Semistructured interviews were conducted with 34 district nurses. Data were analyzed thematically, with assistance from Atlas/ti. A dominant theme emerging from the interviews was ambiguity in the district nurses' supportive role in early palliative care. District nurses discussed the importance of making contact early on to support cancer patients and their families but had difficulty articulating this "support." Ambiguity, lack of confidence, and perceived skill deficits presented district nurses with dilemmas that were difficult to resolve. District nurses have great potential for meeting cancer patients' supportive and palliative care needs, a potential not currently realized. Education alone is unlikely to improve practice without an understanding of the tensions faced by district nurses in their work. Recognizing and addressing dilemmas in the everyday work of district nurses is central to moving practice forward.     

The development of an Integrated Care Pathway for all patients with advanced life-limiting illness - the Supportive Care Pathway

AIM: To describe the development and implementation of an Integrated Care Pathway for all patients with advanced life-limiting illness who have been admitted to hospital. BACKGROUND: This pathway, called the Supportive Care Pathway, has been developed not only in response to the national drivers to improve end of life care, but also in recognition of local survey data which demonstrated the need for strategies to support the provision of palliative care. The pathway is aimed primarily at generalist staff who may have a significant number of patients with palliative care needs on their wards, though not necessarily yet in the last days of life. METHOD: The pathway, which is being piloted on three elderly care wards in the West Midlands, has been developed in line with accepted Integrated Care Pathway methodology and is being evaluated using the Integrated Care Pathways Assessment Tool. RESULTS: The pathway has been well received by staff using it and early evaluation of its effect in improving documentation of care is encouraging. CONCLUSIONS: Unacceptable variations in care for those nearing the end of life is recognized. It is believed that the use of the Supportive Care Pathway may help to reduce that variation by identifying and supporting patients thought to be in the last year of their life.     

Monitoring the care of lung cancer patients: linking audit and care pathways

Clinical audit plays an important role in monitoring the provision of care for patients whatever their condition. Care pathways define the steps and expected course of events in the care of patients with a specific clinical problem over a set time scale. This paper describes a study undertaken in a multisite cancer unit to develop a tool for monitoring the progress of lung cancer patients through a care pathway and auditing key standards within the pathway. Important issues associated with the development of this tool are highlighted. The process of developing this tool involved the following steps: a review of the literature dealing with the management of lung cancer patients; interviews with key personnel in primary, secondary, tertiary and palliative care; development of a paper-based series of forms representing key steps in the patient's care pathway; 3-month trial of the paper-based tool; analysis of completion rates and interviews with form users to evaluate effectiveness; and recommendations for creating an electronic record using the experience and lessons learned from the paper version. The paper forms developed through this multistage process were found to be acceptable to users and have the potential to provide accurate information at key points for audit throughout the patient's time within the health-care system for their lung cancer condition. The flexibility of this methodology allows it to be adapted readily to a variety of clinical situations and conditions.     

Bringing palliative care to a Canadian cancer center: the palliative care program at Princess Margaret Hospital

It is increasingly recognized that complete care of the patient with cancer includes palliative care, which is applicable early in the course of illness, in conjunction with life-prolonging treatment. Princess Margaret Hospital (PMH) is Canada’s largest center for cancer care and research, and it is an international referral center for patients with cancer. The Palliative Care Program at PMH has developed into a comprehensive clinical, educational, and research program, with an acute palliative care unit, daily palliative care clinics, a cancer pain clinic, and a consultation service that sees urgent consultations on a same-day basis in inpatient and outpatient areas. We will describe the components, successes, and challenges of our program, which may be useful for others, who are developing palliative care programs in an academic setting.     

上海市晚期癌症患者姑息照护质量及其影响因素的分析

目的 调查上海市晚期癌症患者的姑息照护质量及其影响因素.方法 采用一般资料调查表和姑息照护结局量表对300例晚期癌症患者进行调查.结果 晚期癌症患者姑息照护质量得分为（16.55±6.47）分;家庭人均月收入、经济压力、遵守医嘱程度、病程、患者是否知晓病情、心理护理、被照护医院等级是影响晚期癌症患者姑息照护质量的主要因素.结论 鉴别晚期癌症患者姑息照护质量的主要影响因素可帮助临床医护人员及相关政策部门制订针对性强的于预对策,以提高晚期癌症患者的照护质量水平,进而提升其生存质量.     

Managing family centered palliative care in aged and acute settings

This paper reports on the management of family centered palliative care in different aged care and acute Australian inpatient settings, following the integration of palliative care with mainstream services. Eighty-eight semistructured interviews were conducted and 425 questionnaires (Palliative Care Practices Questionnaire--PCPQ) were returned, completed from 12 regional and metropolitan locations. Transcribed interviews were analyzed using QSR NVivo and mean PCPQ scores from the four settings were compared. Scores on items from the PCPQ related to family centered care confirmed the analyses. Interviews revealed that factors contributing to the level of support for families offered in the various settings included the core business of the unit; the length of stay of the patients or residents; the acuity or symptom burden; and the coordinated involvement of the multidisciplinary team. Strategies for improving supportive family care are proposed.     

Current practice and knowledge of oral care for cancer patients: a survey of supportive health care providers

Background The Oral Care Study Section of the Multinational Association of Supportive Care in Cancer (MASCC) and the International Society for Oral Oncology (ISOO) conducted a survey on clinical practices of oral/dental management of cancer patients among supportive health care providers. The main purpose was to evaluate the knowledge and current practice for preventing and managing oral side effects associated with intensive chemotherapy (ICT), hematopoietic cell transplant (HCT), and radiation therapy to the head and neck (H&N RT).Materials and methods A questionnaire designed and pretested was sent to 212 MASCC/ISOO members around the world with different dental and medical backgrounds.Main results Seventy-four individuals (35%) responded. The majority of respondents were aware of possible oral complications and provided patients with clinical strategies and recommendations although there was considerable variability among the respondents. Approximately 75% stated that patients were referred for oral/dental care prior to H&N RT and ICT including HCT. However, integrated dental and medical services were reported available in only about 25% of the institutions, and most patients were referred to community-based dental professionals.Main conclusions The survey represents a first review of current, international oral care practices. It suggests a need to develop evidence-based clinical guidelines to support effective oral/dental interventions and management strategies for this population. Furthermore, strategies for implementation of oral care protocols and better integration of dental and medical services should be developed. Caution in interpreting these findings is urged due to the limited response rate.For the Oral Care Study Section of the Multinational Association of Supportive Care in Cancer and the International Society for Oral Oncology. Chairs: Dr. Fred K. L. Spijkervet and Dr. Philip C. Fox.     

Using the improving palliative care in the intensive care unit (IPAL-ICU) project to promote palliative care consultation

Background

The Improving Palliative Care in the Intensive Care Unit (IPAL-ICU) project is an initiative designed to improve the quality of palliative care in the intensive care unit. One of the problems to be addressed is the underutilization of palliative care.

Measures

The percentage change in number of palliative care consults in the Medical ICU (MICU) and Surgical ICU (SICU) compared with the same time period the previous year was used as an objective measure to indicate increased utilization of palliative care.

Intervention

Two hundred seventy-three patients were screened for potential palliative care consultation. After each patient screening, the attending physician was offered the opportunity to consult the palliative care consultation team.

Outcomes

In comparison with the same time period the previous year, an increase in palliative care consults of 113% in the MICU and of 51% in the SICU was noted during the screening period.

Conclusions/Lessons Learned

The IPAL-ICU project framework and recommendations can be effectively used to increase the number of palliative care consults in the ICU.     

Meeting Report

Abstract

There is a significant gap in the provision of palliative care for children living with HIV (CLHIV) in Indonesia. While Indonesia has one of the highest rates of HIV infection amongst children in Asia, there is limited availability and access to palliative care services for CLHIV, especially for those living in rural areas. This paper highlights the need to scale up the provision of pediatric palliative care services for CLHIV in the country through the integration of palliative care into existing HIV care. This integration would not only increase the accessibility of palliative care for CLHIV, but also improve the quality of HIV care by addressing and meeting individual needs, enhancing retention in HIV care and improving quality of life amongst CLHIV. An effective integration of palliative care may be achieved by adopting World Health Organization’s Public Health Strategy for Palliative Care, with adaptations made to accommodate the unique geographical and cultural contexts of Indonesia.     

The importance of clinical practice guidelines (CPGs) for the quality and development of supportive care in Central and Eastern European (CEE) countries

Supportive care CPGs are intended to improve the quality of supportive care received by cancer patients. They hold potential benefits for health-care professionals, health-care organizations and patients. In order to provide an effective influence of CPGs on supportive care development in CEE countries their validity and successful implementation in clinical practice must be ensured. This would involve several important steps: (1) achievement of a consensus across Europe about what constitutes supportive care in cancer; (2) identification of supportive care priorities in CEE countries to be covered by the guidelines; and (3) searching existing CPGs relevant to previously identified priorities. Valid international CPGs could then be translated and adapted to local resources and circumstances in CEE countries and used to prepare national supportive care CPGs which could assist in the development of national supportive care standards. Skills, expertise and additional investment are required for local adaptation, dissemination and implementation of international supportive care CPGs.This work was presented as an invited lecture at the 15th International Symposium Supportive Care in Cancer, Berlin, Germany, 18–21 June 2003.     

一例ⅡB期非小细胞肺癌术后患者的循证治疗

目的报告1例ⅡB期非小细胞肺癌术后患者的循证治疗体会。方法将针对该例患者临床问题转化为可回答的形式,通过计算机检索Cochrane图书馆（2009年第2期）、PubMed（1970～2009年6月）和ACP Journal Club（1996～2009年6月）,查找并评价当前与非小细胞肺癌ⅡB期治疗相关的最佳临床证据。结果现有证据表明,第Ⅰ、Ⅱ期术后辅助性放疗、化疗并不能改善患者生存率,反而会相对增加患者的死亡风险。按照患者及家属意愿,该患者术后未进行放化疗,而是采用姑息对症支持治疗,效果满意,好转出院。结论Ⅰ、Ⅱ期非小细胞肺癌术后放疗或化疗并不能明显改善患者生存率,反而会相对增加患者的死亡风险。因而,术后是否采用放疗或化疗应慎重考虑。     

Evaluation of a scheme to enhance palliative cancer care in rural Wales

Since the early 1990s, the United Kingdom has seen several initiatives designed to improve the quality of cancer palliative care in the community. We report on the evaluation of a project that took place in the rural county of Powys in Wales in which a group of general practitioner clinical facilitators (GPCFs) sought to raise the overall standard of palliative care among primary health care teams (PHCTs). The evaluation was conducted over 3 years and made use of several methods: interviews with facilitators and other key stakeholders at regular intervals throughout the project; a survey of PHCT members at two time points; an analysis of patterns of opioid prescribing in the county before and during the project; monitoring of referrals to specialist palliative care services out of county; and an analysis of place of death of those dying from cancer. The evaluation found that local general practitioners (GPs) were willing to work as facilitators and that they made contact with over two thirds of those in the PHCTs. Facilitators undertook a variety of clinical, educational and service development initiatives but did report on problems of role definition and time management. There were no marked changes in patterns of referral to specialist palliative care or in place of death, but there was some evidence to suggest that the facilitators had an influence on their colleagues opioid prescribing patterns.     

A national Position Statement on adult end-of-life care in critical care

Patient death in critical care is not uncommon. Rather, the provision of end-of-life care is a core feature of critical care nursing, yet not all nurses feel adequately prepared for their role in the provision of end-of-life care. For this reason, the Australian College of Critical Care Nurses (ACCCN) supported the development of a Position Statement to provide nurses with clear practice recommendations to guide the provision of end-of-life care, which reflect the most relevant evidence and information associated with end-of-life care for adult patients in Australian critical care settings. A systematic literature search was conducted between June and July, 2020 in CINAHL Complete, Medline, and EMBASE databases to locate research evidence related to key elements of end-of-life care in critical care. Preference was given to the most recent Australian or Australasian research evidence, where available. Once the practice recommendations were drafted in accordance with the research evidence, a clinical expert review panel was established. The panel comprised clinically active ACCCN members with at least 12 months of clinical experience. The clinical expert review panel participated in an eDelphi process to provide face validity for practice recommendations and a subsequent online meeting to suggest additional refinements and ensure the final practice recommendations were meaningful and practical for critical care nursing practice in Australia. ACCCN Board members also provided independent review of the Position Statement. This Position Statement is intended to provide practical guidance to critical care nurses in the provision of adult end-of-life care in Australian critical care settings.     

Development, Implementation, and Process Evaluation of a Regional Palliative Care Quality Improvement Project

The delivery of optimal palliative care requires an integrated and coordinated approach of many health care providers across the continuum of care. In response to identified gaps in the region, the Palliative Care Integration Project (PCIP) was developed to improve continuity and decrease variability of care to palliative patients with cancer. The infrastructure for the project included multi-institutional and multisectoral representation on the Steering Committee and on the Development, Implementation and Evaluation Working Groups. After review of the literature, five Collaborative Care Plans and Symptom Management Guidelines were developed and integrated with validated assessment tools (Edmonton Symptom Assessment System and Palliative Performance Scale). These project resources were implemented in the community, the palliative care unit, and the cancer center. Surveys were completed by frontline health professionals (defined as health professionals providing direct care), and two independent focus groups were conducted to capture information regarding: 1) the development of the project and 2) the processes of implementation and usefulness of the different components of the project. Over 90 individuals from more than 30 organizations were involved in the development, implementation, and evaluation of the PCIP. Approximately 600 regulated health professionals and allied health professionals who provided direct care, and over 200 family physicians and medical residents, received education/training on the use of the PCIP resources. Despite unanticipated challenges, frontline health professionals reported that the PCIP added value to their practice, particularly in the community sector. The PCIP showed that a network in which each organization had ownership and where no organization lost its autonomy, was an effective way to improve integration and coordination of care delivery.     

Enhancing hospital nurses' knowledge of palliative care: a network nurse programme

The palliative care network nurse programme was developed to educate and skill generalist nurses in the care of the dying patient within the acute hospital setting. It developed at the request of nurses who had been involved in the piloting of the Liverpool Care of the Dying Pathway. The programme consists of a monthly meeting that encompasses an educative component and networking opportunities. In a preliminary evaluation of the programme, a questionnaire was sent to the network nurses (response rate 80%, n = 33). The nurses reported the programme to be beneficial in providing them with increased palliative care knowledge. Support and networking opportunities were also identified. This article discusses the programme, the evaluation findings and makes suggestions for further research.     

The evolution of palliative care and the relevance to residential aged care: Understanding the past to inform the future

Improving the experience of dying in residential aged care units became a significant project of the Australian Government’s National Palliative Care Program in 2004. This initiative resulted in an expectation that residential aged care facilities would adopt the recommended palliative approach to underpin service delivery. Recognising palliative care as a specialist area of health care practice is a recent development which has influenced the expectations of community and government. This paper traces the global history of palliative care and how historical factors influenced its development in Australia. This discussion presents an overview of the positioning of dying and death within society, explaining how with the shifting emphasis on care of the dying accordingly has been the focus on palliative care specialists. Care of the dying in residential aged care units has largely been overlooked in the context of specialist involvement. This paper acknowledges dying and death as occurring in residential aged care facilities, illuminating the advantages of adopting a palliative approach and offers recommendations.     

Quality improvement in cancer symptom assessment and control: the Provincial Palliative Care Integration Project (PPCIP)

ContextThe Provincial Palliative Care Integration Project (PPCIP) was implemented in Ontario, Canada, to enhance the quality of palliative care delivery. The PPCIP promoted collaboration and integration across service sectors to improve screening and assessment, palliative care processes, as well as clinician practice and outcomes for cancer patients.ObjectivesThe project involved 1) implementation of the Edmonton Symptom Assessment System (ESAS) for symptom screening, 2) use of “rapid-cycle change” quality improvement processes to improve screening and symptom management, and 3) improvements in integration and access to palliative care services.MethodsSymptom scores were collected and made accessible to the care team through a web-based tool and kiosk technology, which helped patients enter their ESAS scores at each visit to the regional cancer center or at home with their nurse. Symptom response data were gathered through clinical chart audits.ResultsWithin one year of implementation, regional cancer centers saw improvements in symptom screening (54% of lung cancer patients), symptom control (69% of patients with pain scores and 31% of patients with dyspnea scores seven or more were reduced to six or less within 72 hours), and functional assessment (23% of all patients and 64% of palliative care clinic patients). ESAS screening rates reached 29%, and functional assessment reached 26% of targeted home care patients.ConclusionThe PPCIP demonstrated that significant strides in symptom screening and response can be achieved within a year using rapid-cycle change and collaborative approaches. It showed that both short- and long-term improvement require ongoing facilitation to embed the changes in system design and change the culture of clinical practice.