Delivery of health care at the end of life in cancer patients of four swiss cantons a retrospective database study (SAKK 89/09)

Background The use of cancer related therapy in cancer patients at the end-of-life has increased over time in many countries. Given a lack of published Swiss data, the objective of this study was to describe delivery of health care during the last month before death of cancer patients. Methods Claims data were used to assess health care utilization of cancer patients (identified by cancer registry data of four participating cantons), deceased between 2006-2008. Primary endpoints were hospitalization rate and delivery of cancer related therapies during the last 30 days before death. Multivariate logistic regression assessed the explanatory value of patient and geographic characteristics. Results 3809 identified cancer patients were included. Hospitalization rate (mean 68.5%, 95%CI 67.0-69.9) and percentage of patients receiving anti-cancer drug therapies (ACDT, mean 14.5%, 95%CI 13.4-15.6) and radiotherapy (mean 7.7%, 95%CI 6.7-8.4) decreased with age. Canton of residence and insurance type status most significantly influenced the odds for hospitalization or receiving ACDT. Conclusions The intensity of cancer specific care showed substantial variation by age, cancer type, place of residence and insurance type status. This may be partially driven by cultural differences within Switzerland and the cantonal organization of the Swiss health care system.

Cancer-related therapies at the end of life in hospitalized cancer patients from four Swiss cantons: SAKK 89/09.

The use of cancer-related therapies in cancer patients hospitalized at the end of life has increased in many countries over time. Given the scarcity of published Swiss data, the objective of this study was to evaluate the influence of hospital type and other factors on the delivery of health care during the last month before death. Claims data were used to assess health care utilization of cancer patients (identified by cancer registry data of four participating Swiss cantons) who deceased between 2006 and 2008. Primary endpoints were delivery of cancer-related therapies during the last 30 days before death. Multivariate logistic regression assessed the explanatory value of hospital type, patient and geographic characteristics. Of 3,809 identified cancer patients in the claims database, 2,086 patients dying from cancer were hospitalized during the last 30 days before death, generating 2,262 inpatient episodes. Anticancer drug therapy was given in 22.2% and radiotherapy in 11.7% of episodes. Besides age and cancer type, the canton of residence and hospital type showed independent, statistically significant associations with intensity of care, which was highest in university hospitals. These results should initiate a discussion among oncologists in Switzerland and may question the compliance with standard of care guidelines for terminal cancer patients.

Days spent in acute care hospitals at the end of life of cancer patients in four Swiss cantons: a retrospective database study (SAKK 89/09).

Number of days spent in acute hospitals (DAH) at the end of life is regarded as an important care quality indicator for cancer patients. We analysed DAH during 90 days prior to death in patients from four Swiss cantons. Claims data from an insurance provider with about 20% market share and patient record review identified 2086 patients as dying of cancer. We calculated total DAH per patient. Multivariable generalised linear modelling served to evaluate potential explanatory variables. Mean DAH was 26 days. In the multivariable model, using complementary and alternative medicine (DAH = 33.9; +8.8 days compared to non-users) and canton of residence (for patient receiving anti-cancer therapy, Zürich DAH = 22.8 versus Basel DAH = 31.4; for other patients, Valais DAH = 22.7 versus Ticino DAH = 33.7) had the strongest influence. Age at death and days spent in other institutions were additional significant predictors. DAH during the last 90 days of life of cancer patients from four Swiss cantons is high compared to most other countries. Several factors influence DAH. Resulting differences are likely to have financial impact, as DAH is a major cost driver for end-of-life care. Whether they are supply- or demand-driven and whether patients would prefer fewer days in hospital remains to be established.

End-of-life care pathways for improving outcomes in caring for the dying (Review)

Background In many clinical areas, integrated care pathways are utilised as structured multidisciplinary care plans which detail essential steps in caring for patients with specific clinical problems. Particularly, care pathways for the dying have been developed as a model to improve the end-of-life care of all patients. They aim to ensure that the most appropriate management occurs at the most appropriate time and that it is provided by the most appropriate health professional. Clinical pathways for end-of-life care management are used widely around the world and have been regarded as the gold standard. Therefore, there is a significant need for clinicians to be informed about the utilisation of end-of-life care pathways with a systematic review. Objectives To assess the effects of end-of-life care pathways, compared with usual care (no pathway) or with care guided by another end-of-life care pathway across all healthcare settings (e.g. hospitals, residential aged care facilities, community). Search strategy The Cochrane Register of controlled Trials (CENTRAL), the Pain, Palliative and Supportive Care Review group specialised register,MEDLINE, EMBASE, review articles and reference lists of relevant articles were searched. The search was carried out in September 2009. Selection criteria All randomised controlled trials (RCTs), quasi-randomised trial or high quality controlled before and after studies comparing use versus non-use of an end-of-life care pathway in caring for the dying. Data collection and analysis Results of searches were reviewed against the pre-determined criteria for inclusion by two review authors. Main results The search identified 920 potentially relevant titles, but no studies met criteria for inclusion in the review. Authors’ conclusions Without further available evidence, recommendations for the use of end-of-life pathways in caring for the dying cannot be made. RCTs or other well designed controlled studies are needed for evaluating the use of end-of-life care pathways in caring for dying people.

End-of-life care in the intensive care setting : a descriptive exploratory qualitative study of nurses' beliefs and practices

Background: End-of-life care is a significant component of work in intensive care. Limited research has been undertaken on the provision of end-of-life care by nurses in the intensive care setting. The purpose of this study was to explore the end-of-life care beliefs and practices of intensive care nurses. Methods: A descriptive exploratory qualitative research approach was used to invite a convenience sample of five intensive care nurses from one hospital to participate in a semi-structured interview. Interview transcripts were analysed using an inductive coding approach. Findings: Three major categories emerged from analysis of the interviews: beliefs about end-of-life care, end-of-life care in the intensive care context and facilitating end-of-life care. The first two categories incorporated factors contributing to the end-of-life care experiences and practices of intensive care nurses. The third category captured the nurses’ end-of-life care practices. Conclusions: Despite the uncertainty and ambiguity surrounding end-of-life care in this practice context, the intensive care setting presents unique opportunities for nurses to facilitate positive end-of-life experiences and nurses valued their participation in the provision of end-of-life care. Care of the family was at the core of nurses’ end-of-life care work and nurses play a pivotal role in supporting the patient and their family to have positive and meaningful experiences at the end-of-life.Variation in personal beliefs and organisational support may influence nurses’ experiences and the care provided to patients and their families. Strategies to promote an organisational culture supportive of quality end-of-life care practices, and to mentor and support nurses in the provision of this care are needed.

End-of-life care pathways for improving outcomes in caring for the dying (Review)

Background This is an updated version of a Cochrane review first published in Issue 1, 2010 of The Cochrane Library. In many clinical areas, integrated care pathways are utilised as structured multidisciplinary care plans that detail essential steps in caring for patients with specific clinical problems. In particular, care pathways for the dying have been developed as a model to improve care of patients who are in the last days of life. The care pathways were designed with an aim of ensuring that the most appropriate management occurs at the most appropriate time and that it is provided by the most appropriate health professional. There have been sustained concerns about the safety of implementing end-of-life care pathways, particularly in the UK. Therefore, there is a significant need for clinicians and policy makers to be informed about the effects of end-of-life care pathways with a systematic review. Objectives To assess the effects of end-of-life care pathways, compared with usual care (no pathway) or with care guided by another end-of-life care pathway across all healthcare settings (e.g. hospitals, residential aged care facilities, community). In particular, we aimed to assess the effects on symptom severity and quality of life of people who are dying; those related to the care such as families, carers and health professionals; or a combination of these. Search Methods We searched the Cochrane Central Register of Controlled Trials (CENTRAL) (Issue 6, 2013), MEDLINE, EMBASE, PsycINFO, CINAHL, review articles and reference lists of relevant articles.We conducted the original search in September 2009, and the updated search in June 2013. Selection Criteria All randomised controlled trials (RCTs), quasi-randomised trial or high-quality controlled before-and-after studies comparing use versus non-use of an end-of-life care pathway in caring for the dying. Data Collection and Analysis Two review authors assessed the results of the searches against the predetermined criteria for inclusion. Main Results The original review identified 920 titles. The updated search found 2042 potentially relevant titles (including the original 920), but no additional studies met criteria for inclusion in the review update. Authors’ Conclusions With sustained concerns about the safety of the pathway implementation and the lack of available evidence on important patient and relative outcomes, recommendations for the use of end-of-life pathways in caring for the dying cannot be made. Since the last version of this review, no new studies met criteria for inclusion in the review update. With recently documented concerns related to the potential adverse effects associated with Liverpool Care Pathway (the most commonly used end-of-life care pathway), we do not recommend decision making based on indirect or low-quality evidence. All health services using end-of-life care pathways are encouraged to have their use of the pathway, to date, independently audited. Any subsequent use should be based on carefully documented evaluations. Large RCTs or other well-designed controlled studies are urgently required for the evaluation of the use of end-of-life care pathways in caring for dying people in various clinical settings. In future studies, outcome measures should include benefits or harms concerning the outcomes of interest in this review in relation to patients, families, carers and health professionals.

End-of-life care in the intensive care unit : a systematic review of qualitative studies investigating the experiences and perceptions of the patient's family

Review question/objective The review objective is to synthesise the best available evidence on experiences and perceptions of family members of intensive care unit patients on the adequacy of end-of-life care, where life-support modalities have been withheld or withdrawn. Inclusion criteria Types of participants This review will consider studies that report on the experiences and perceptions of patients’ families on EOLC in the ICU, where life-support modalities have been withheld or withdrawn. The family is defined as “those who are closest to the patient... the family may include the biological family, family by acquisition, and the family of choice and friends”. Phenomena of interest The phenomena of interest for this review are the patients’ families experiences, perceptions or views on the adequacy of EOLC delivered in the ICU, where life-support modalities were withheld or withdrawn. These experiences may refer to the following views on domains of care considered important at the end-of-life in the ICU, which have been described already in the existing literature: timely, consistent, and compassionate communication, clinician availability, clinical decision making based on patients’ preferences, goals and values, physical care implemented to maintain patient comfort, holistic interdisciplinary care and bereavement care for families of patients who died.

On resilience and acceptance in the transition to palliative care at the end of life

Specialist palliative care is a prominent and expanding site of health service delivery, providing highly specialised care to people at the end of life. Its focus on the delivery of specialised life-enhancing care stands in contrast to biomedicine's general tendency towards life-prolonging intervention. This philosophical departure from curative or life-prolonging care means that transitioning patients can be problematic, with recent work suggesting a wide range of potential emotional, communication and relational difficulties for patients, families and health professionals. Yet, we know little about terminally ill patients' lived experiences of this complex transition. Here, through interviews with 40 inpatients in the last few weeks of life, we explore their embodied and relational experiences of the transition to inpatient care, including their accounts of an ethic of resilience in pre-palliative care and an ethic of acceptance as they move towards specialist palliative care. Exploring the relationship between resilience and acceptance reveals the opportunities, as well as the limitations, embedded in the normative constructs that inflect individual experience of this transition. This highlights a contradictory dynamic whereby participants' experiences were characterised by talk of initiating change, while also acquiescing to the terminal progression of their illness.

End-of-life care pathways for improving outcomes in caring for the dying

This is an updated version of a Cochrane review published in Issue 11, 2013 in the Cochrane Library. In many clinical areas, integrated care pathways are utilised as structured multidisciplinary care plans that detail essential steps in caring for patients with specific clinical problems. In particular, care pathways for the dying have been developed as a model to improve care of patients who are in the last days of life. The care pathways were designed with an aim of ensuring that the most appropriate management occurs at the most appropriate time, and that it is provided by the most appropriate health professional. Since the last update, there have been sustained concerns about the safety of implementing end-of-life care pathways, particularly in the United Kingdom (UK). Therefore, there is a significant need for clinicians and policy makers to be informed about the effects of end-of-life care pathways via a systematic review.

A cross-national cross-sectional survey of the attitudes and perceived competence of final-year medicine, nursing and pharmacy students in relation to end-of-life care in dementia

Background:Little is known about the attitudes of healthcare professional students' perceived competence and confidence in treating those with dementia who are at the end of life.Aim:To explore the attitudes of final year medical, nursing and pharmacy students towards people with dementia and to evaluate their perceived competence and confidence dealing with biomedical and psychosocial issues within the context of palliative care provision to patients with dementia.Design:Cross-sectional survey using a questionnaire.Setting/participants:Final-year students in each profession from Queen's University Belfast (Northern Ireland) and the University of Iowa (USA) were recruited.Method:Three versions of an online questionnaire (containing the Attitudes to Dementia Questionnaire and a series of questions on end-of-life care in dementia) were distributed.Results:A total of 368 responses were received (response rate 42.3%). All respondents reported positive attitudes towards people with dementia. US nursing students reported significantly more positive attitudes than the medical students of United States and Northern Ireland. Medical students were more likely to report low confidence in discussing non-medical aspects of dying, whereas nursing students were most likely to feel prepared and confident to do this. Medical and nursing students reported low confidence with aspects of medication-related care; however, data from the pharmacy samples of Northern Ireland and United States suggested that these students felt confident in advising other healthcare professionals on medication-related issues.Conclusions:While healthcare students hold positive attitudes towards people with dementia, some clinical tasks remain challenging and further basic training may be of benefit.

General Nurses’ Experiences of End-Of-Life Care in the Acute Hospital Setting

Approximately 90% of the UK population spend some time in hospital in their final year of life, and more than half of the population die in hospital. This review aims to explore the experiences of general nurses when providing end-of-life care to patients in the acute hospital setting. Nine studies were identified through a literature search, and each was then analysed and evaluated until themes emerged. Six themes were drawn from the literature: lack of education and knowledge, lack of time with patients, barriers arising in the culture of the health-care setting, communication barriers, symptom management, and nurses' personal issues. The themes cause concern about the quality of end-of-life care being provided in the acute care setting. The literature appears to be consistent in the view that terminally ill patients are best cared for in specialised care settings, such as palliative care units and hospices. However, increasing demands on health services will result in greater numbers of dying patients being admitted to the acute hospital setting. It is therefore paramount that general nurses' educational needs are met to ensure they develop clinical competence to provide high-quality holistic end-of-life care.

Are family physician visits and continuity of care associated with acute care use at end-of-life? A population-based cohort study of homecare cancer patients

Background: Previous end-of-life cancer research has shown an association between increased family physician continuity of care and reduced use of acute care services; however, it did not focus on a homecare population or control for homecare nursing.

Aim: Among end-of-life homecare cancer patients, to investigate the association of family physician continuity with location of death and hospital and emergency department visits in the last 2 weeks of life while controlling for nursing hours.

Design: Retrospective population-based cohort study.

Setting/participants: Cancer patients with ≥1 family physician visit in 2006 from Ontario, Canada. Family physician continuity of care was assessed using two measures: Modified Usual Provider of Care score and visits/week. Its association with location of death and hospital and emergency department visits in the last 2 weeks of life was examined using logistic regression.

Results: Of 9467 patients identified, the Modified Usual Provider of Care score demonstrated a dose-response relationship with increasing continuity associated with decreased odds of hospital death and visiting the hospital and emergency department in the last 2 weeks of life. More family physician visits/week were associated with lower odds of an emergency department visit in the last 2 weeks of life and hospital death, except for patients with greater than 4 visits/week, where they had increased odds of hospitalizations and hospital deaths.

Conclusions: These results demonstrate an association between increased family physician continuity of care and decreased odds of several acute care outcomes in late life, controlling for homecare nursing and other covariates.©The Author(s) 2013 Reprints and permissions sagepub.co.uk/journalsPermissions.nav.

An Appraisal of End-of-Life Care in Persons with Chronic Kidney Disease Dying in Hospital Wards

AIM: To review end-of-life care provided by renal healthcare professionals to hospital in-patients with chronic kidney disease, and their carers, over a 12-month period in Northern Ireland.

METHODS: Retrospective review of 100 patients.

RESULTS: Mean age at death was 72 years (19-95) and 56% were male. Eighty three percent of patients had a 'Not For Attempted Resuscitation' order during their last admission and this was implemented in 42%. Less than 20% of all patients died in a hospital ward. No patients had an advanced care plan, although 42% had commenced the Liverpool Care Pathway for the Dying Patient. Patients suffered excessive end-of-life symptoms. In addition, there was limited documentation of carer involvement and carer needs were not formally assessed.

CONCLUSION: End-of-life care for patients with advanced chronic renal disease can be enhanced. There is significant variation in the recording of discussions regarding impending death and little preparation. There is poor recording of the patients' wishes regarding death. Those with declining functional status, including those frequently admitted to hospital require holistic assessment regarding end-of-life needs. More effective communication between the patient, family and multi-professional team is required for patients who are dying and those caring for them.

Initiating advance care planning on end-of-life issues in dementia: Ambiguity among UK and Dutch physicians

Background
In dementia, advance care planning (ACP) of end-of-life issues may start as early as possible in view of the patient’s decreasing ability to participate in decision making. We aimed to assess whether practicing physicians in the Netherlands and the United Kingdom who provide most of the end-of-life care, differ in finding that ACP in dementia should start at diagnosis.

Methods
In a cross-sectional study, we surveyed 188 Dutch elderly care physicians who are on the staff of nursing homes and 133 general practitioners from Northern Ireland. We compared difference by country in the outcome (perception of ACP timing), rated on a 1–5 agreement scale. Regression analyses examined whether a country difference can be explained by contrasts in demographics, presence, exposure and role perceptions.

Results
There was wide variability in agreement with the initiation of ACP at dementia diagnosis, in particular in the UK but also in the Netherlands (60.8% agreed, 25.3% disagreed and 14.0% neither agreed, nor disagreed). Large differences in physician characteristics (Dutch physicians being more present, exposed and adopting a stronger role perception) hardly explained the modest country difference. The perception that the physician should take the initiative was independently associated with agreeing with ACP at diagnosis.

Conclusions
There is considerable ambiguity about initiating ACP in dementia at diagnosis among physicians practicing in two different European health care systems and caring for different patient populations. ACP strategies should accommodate not only variations in readiness to engage in ACP early among patient and families, but also among physicians.