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.

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.

Towards the End of Life: an In-depth Exploration of the Role of Admiral Nursing in Dementia Care (Innovative Practice)

There are approximately 150 Admiral Nurses in the UK who work alongside other health and social care professionals to support people with dementia and their family carers. However, the stigma of the disease and the lack of recognition that dementia is a life limiting illness have led to neglect in addressing the end of life challenges. The small in-depth study reported here aimed to add to an extremely limited formal evidence base for the effectiveness of this approach and to develop a greater understanding of the range of knowledge and skills required of them in ensuring they are better able to support families in the later stages of the illness. Findings focus on the experiences of family carers, the impact of performing the Admiral Nurse role and the use of qualitative measures in this setting.

End-of-life practices in seven Brazilian pediatric intensive care units

Objective: To evaluate the incidence of life support limitation and medical practices in the last 48 hrs of life of children in seven Brazilian pediatric intensive care units (PICUs). Design. Cross-sectional multicenter retrospective study based on medical chart review. Setting: Seven PICUs belonging to university and tertiary hospitals located in three Brazilian regions: two in Porto Alegre (southern region), two in Sao Paulo (southeastern region), and three in Salvador (northeastern region). Patients. Medical records of all children who died in seven PICUs from January 2003 to December 2004. Deaths in the first 24 hrs of admission to the PICU and brain death were excluded. Interventions: Two pediatric intensive care residents from each PICU were trained to fill out a standard protocol (K = 0.9) to record demographic data and all medical management provided in the last 48 hrs of life (inotropes, sedatives, mechanical ventilation, full resuscitation maneuvers or not). Student`s t-test, analysis of variance, chi-square test, and relative risk were used for comparison of data. Measurements and Main Results. Five hundred and sixty-one deaths were identified; 97 records were excluded (61 because of brain death and 36 due to <24 hrs in the PICU). Thirty-six medical charts could not be found. Cardiopulmonary resuscitation was performed in 242 children (57%) with a significant difference between the southeastern and northeastern regions (p =.0003). Older age (p = .025) and longer PICU stay (p = .001) were associated with do-not-resuscitate orders. In just 52.5% of the patients with life support limitation, the decision was clearly recorded in the medical chart. No ventilatory support was provided in 14 cases. Inotropic drug infusions were maintained or increased in 66% of patients with do-not-resuscitate orders. Conclusions. The incidence of life support limitation has increased among Brazilian PICUs but with significant regional differences. Do-not-resuscitate orders are still the most common practice, with scarce initiatives for withdrawing or withholding life support measures.

Nurses' knowledge of advance directives and perceived confidence in end-of-life care: a cross-sectional study in five countries

Nurses' knowledge regarding advance directives may affect their administration and completion in end-of-life care. Confidence among nurses is a barrier to the provision of quality end-of-life care. This study investigated nurses' knowledge of advance directives and perceived confidence in end-of-life care, in Hong Kong, Ireland, Israel, Italy and the USA using a cross-sectional descriptive design (n = 1089). In all countries, older nurses and those who had more professional experience felt more confident managing patients' symptoms at end-of-life and more comfortable stopping preventive medications at end-of-life. Nurses in the USA reported that they have more knowledge and experience of advance directives compared with other countries. In addition, they reported the highest levels of confidence and comfort in dealing with end-of-life care. Although legislation for advance directives does not yet exist in Ireland, nurses reported high levels of confidence in end-of-life care.

The impact of a simulated intervention on attitudes of undergraduate nursing and medical students towards end of life care provision

Background: The concerns of undergraduate nursing and medical students’ regarding end of life care are well documented. Many report feelings of emotional distress, anxiety and a lack of preparation to provide care to patients at end of life and their families. Evidence suggests that increased exposure to patients who are dying and their families can improve attitudes toward end of life care. In the absence of such clinical exposure, simulation provides experiential learning with outcomes comparable to that of clinical practice. The aim of this study was therefore to assess the impact of a simulated intervention on the attitudes of undergraduate nursing and medical students towards end of life care.
Methods: A pilot quasi-experimental, pretest-posttest design. Attitudes towards end of life care were measured using the Frommelt Attitudes Towards Care of the Dying Part B Scale which was administered pre and post a simulated clinical scenario. 19 undergraduate nursing and medical students were recruited from one large Higher Education Institution in the United Kingdom.
Results: The results of this pilot study confirm that a simulated end of life care intervention has a positive impact on the attitudes of undergraduate nursing and medical students towards end of life care (p < 0.001).
Conclusions: Active, experiential learning in the form of simulation teaching helps improve attitudes of undergraduate nursing and medical students towards end of life. In the absence of clinical exposure, simulation is a viable alternative to help prepare students for their professional role regarding end of life care.

No second chance: the experiences of junior neonatal nurses in providing end-of-life care for babies and families in the NNU

Background

An infant’s death is acutely stressful for parents and professionals. Little is known about junior nurses’ experiences providing end-of-life care in Neonatal Units (NNU).

Objectives

To better understand junior nurses’ experiences providing end-of-life care in NNU, the study explored the challenges and opportunities inherent in their practice relating to providing such care to babies and their families.

Methods

Neonatal nurses (n=12) with less than 3 years’ experience who were undergoing a neonatal education programme participated. Two focus groups were convened each with 6 nurses. The Ethics Committee at the relevant University approved the study. Nominal Group Technique (NGT) was used in the focus groups to build consensus around the challenges faced by junior nurses, alongside suggested developments in improving future care provision. Primary analysis involved successive rounds of ranking and decision making whilst secondary analysis involved thematic analysis.

Results

The study identified the pressures these nurses felt in having only one chance to ‘get it right’ for the infants and their families. They perceived the need for further ‘education and training’ highlighting that improved education provision would include both additional courses and internal training sessions. Greater ‘support’ from mentors themselves more experienced in this aspect of care within the NNU was identified as important in addressing issues around confidence building and skill development.

Conclusions

The results highlight junior nurses’ need for specific education and mentorship around end-of-life care for babies. This presentation will outline the implications for practice, education and further research.

Beyond the numbers of maternal near-miss in Rwanda - a qualitative study on women's perspectives on access and experiences of care in early and late stage of pregnancy.

BACKGROUND: Rwanda has made remarkable progress in decreasing the number of maternal deaths, yet women still face morbidities and mortalities during pregnancy. We explored care-seeking and experiences of maternity care among women who suffered a near-miss event during either the early or late stage of pregnancy, and identified potential health system limitations or barriers to maternal survival in this setting. METHODS: A framework of Naturalistic Inquiry guided the study design and analysis, and the 'three delays' model facilitated data sorting. Participants included 47 women, who were interviewed at three hospitals in Kigali, and 14 of these were revisited in their homes, from March 2013 to April 2014. RESULTS: The women confronted various care-seeking barriers depending on whether the pregnancy was wanted, the gestational age, insurance coverage, and marital status. Poor communication between the women and healthcare providers seemed to result in inadequate or inappropriate treatment, leading some to seek either traditional medicine or care repeatedly at biomedical facilities. CONCLUSION: Improved service provision routines, information, and amendments to the insurance system are suggested to enhance prompt care-seeking. Additionally, we strongly recommend a health system that considers the needs of all pregnant women, especially those facing unintended pregnancies or complications in the early stages of pregnancy.

Using an end-of-life care pathway in acute stroke: a mixed methods study of decision-making and care experiences

Background: The evidence base on end-of-life care in acute stroke is limited, particularly with regard to recognising dying and related decision-making. There is also limited evidence to support the use of end-of-life care pathways (standardised care plans) for patients who are dying after stroke. Aim: This study aimed to explore the clinical decision-making involved in placing patients on an end-of-life care pathway, evaluate predictors of care pathway use, and investigate the role of families in decision-making. The study also aimed to examine experiences of end-of-life care pathway use for stroke patients, their relatives and the multi-disciplinary health care team. Methods: A mixed methods design was adopted. Data were collected in four Scottish acute stroke units. Case-notes were identified prospectively from 100 consecutive stroke deaths and reviewed. Multivariate analysis was performed on case-note data. Semi-structured interviews were conducted with 17 relatives of stroke decedents and 23 healthcare professionals, using a modified grounded theory approach to collect and analyse data. The VOICES survey tool was also administered to the bereaved relatives and data were analysed using descriptive statistics and thematic analysis of free-text responses. Results: Relatives often played an important role in influencing aspects of end-of-life care, including decisions to use an end-of-life care pathway. Some relatives experienced enduring distress with their perceived responsibility for care decisions. Relatives felt unprepared for and were distressed by prolonged dying processes, which were often associated with severe dysphagia. Pro-active information-giving by staff was reported as supportive by relatives. Healthcare professionals generally avoided discussing place of care with families. Decisions to use an end-of-life care pathway were not predicted by patients’ demographic characteristics; decisions were generally made in consultation with families and the extended health care team, and were made within regular working hours. Conclusion: Distressing stroke-related issues were more prominent in participants’ accounts than concerns with the end-of-life care pathway used. Relatives sometimes perceived themselves as responsible for important clinical decisions. Witnessing prolonged dying processes was difficult for healthcare professionals and families, particularly in relation to the management of persistent major swallowing difficulties.

Lawful withdrawal: The video

When should a person who has a heart attack not be resuscitated? When should a patient no longer be kept alive on a ventilator, or be provided with food and water by a tube? When should a person not be given a blood transfusion they need to stay alive? The answers to these questions depend on a number of factors including the mental or physical condition of the patient and any wishes they have expressed prior to losing the ability to make this decision, as well as the requirements of good medical practice. This video is a record of a public lecture held on 7 July 2004 by the Faculty of Law at the Queensland University of Technology, in association with the Faculty of Health, the Centre for Palliative Care Research and Education, and Palliative Care Queensland.