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.

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.

"I’ll call you when we are ready" (One family’s experience of critical care and end of life decision making)

The purpose of this paper is to explore through narrative accounts one family's expérience of critical care, after the admission of a family member to an Intensive Care Unit (ICU) and their subséquent death five weeks later. Numerous studies support the need for effective communication and clear information to be given to the family. In this instance it was évident from their stories that there were numerous barriers to communication, including language and a lack of insight into the needs of the family. Many families do not understand the complexities of nursing care in an ICU so lack of communication by nursing staff was identified as uncaring behavior and encounters. Facilitating a family's proximity to a dying patient and encouraging them to participate in care helps to maintain some sensé of personal control. Despite a commitment to involving family members in care, which was enshrined in the Unit Philosophy, relatives were banished to the waiting room for hours. They experienced feelings of powerlessness and helplessness as they waited with other relatives for news following investigations or until 'the doctor had completed his rounds'. Explanations of "we must make 'the patient' comfortable" was no consolation for those who wished to be involved in care. The words "I'il call you when we are ready" became a mantra to the forgotten families who waited patiently for those with power to admit them to the ICU. Implications are this family felt they were left alone to cope with the traumatic expériences leading up to and surrounding the death. They felt mainly supported by the priest, who not only administered the last rites but provided spiritual support to the family and dealt sensitively with many issues. Paternalism in décision making when there is a moral obligation to ensure that discussions on end of life dilemmas are an inclusive process with families, doctors, nurses was not understood, therefore it caused conflict within the family over EOL décision making. The family felt that the opportunity to share expériences through telling and retelling their stories would enable them to reconfigure the past and create purpose in the future.

End-of-life decision making for older people

This chapter deals with the increasing issues surrounding end-of-life decision making. As the life trajectory for older people changes, the need for open discussion about their health problems and treatment becomes more critical. Acceptance of the ageing process itself is often not easy so the matter of a good death is even more distressing for some people to consider. The vignette provides an excellent discussion on the need for open dialogue with the older person and their families, whether they are acutely ill or have chronic health problems. How a person wishes to be treated when quality of life is not going to improve, no matter what interventions are put in place, seems essential for person-centred care. The issue of competency is one that must be determined before any decision is made by any person involved in care.

'Murder or Mercy?' an innovative module helping UK medical students to articulate their own ethical standpoints regarding end-of-life decisions

Objectives This student selected component (SSC) was designed to equip United Kingdom (UK) medical students to respond ethically and with sensitivity to requests they might receive as qualified doctors in regard to euthanasia and assisted dying. The aim was to expose students to relevant opinions and experiences and to provide opportunities to explore and justify their own views and rehearse ethical decision making in a safe learning environment. Method The module is delivered by specialists from a number of disciplines including law, theology, medicine and nursing, each providing students with a working knowledge allowing them to actively discuss cases, articulate their own views and practise ethical reasoning through group and individual study. Visits to local intensive care units, palliative care wards and hospices are integrated effectively with theory. Student assessment comprises a dissertation, student-led debate and reflective commentary. Module impact was evaluated by analysis of student coursework and a questionnaire. Results Students found the content stimulating and relevant to their future career and agreed that the module was well-structured and that learning outcomes were achieved. They greatly appreciated the clinical context provided by the visits and opportunities to apply ethical reasoning to real cases and to debate ethical issues with peers. Students reported an increased discernment of the ethical and legal position and practical considerations and a greater awareness of the range of professional and lay viewpoints held. Student perceptions were confirmed on analysis of their submitted coursework. Many participants were less strongly in favour of euthanasia and assisted dying on module completion than at the outset but all felt better equipped to justify their own viewpoint and to respond appropriately to patient requests. Conclusions The multi-disciplinary nature of this course is helpful in preparing students to deal effectively and sensitively with ethical dilemmas they will encounter in their medical career. Use of an integrated, learner-centred approach equips students to actively engage with their peers in discussion of such issues and to formulate and defend their own position.

Gender differences among Canadian spousal caregivers at the end of life

The purpose of this study was to examine gender differences in spousal caregiving at the end of life. The primary research question was to determine gender differences in caregiver strain among spousal caregivers. Secondary research questions investigated included (i) the presence of gender differences among spousal caregivers in the duration of care provided; (ii) gender differences among spousal caregivers in formal service use and unmet service needs; and (iii) whether support to care recipients in activities of daily living varied according to the gender of the spousal caregiver. The study was conducted over a 2-year period (2000-2002) in south-central Ontario, Canada. The study sample included 283 informal spousal caregivers (198 females, 85 males) each of whom were caring for a terminally ill spouse at the time they participated in a cross-sectional telephone survey. The analysis showed that females reported a significantly greater level of caregiving strain than males (t = -2.12, d.f. = 281, P = 0.035). When considering source of support in activities of daily living for the care recipient, differential assistance was noted on the basis of caregiver gender. Female caregivers had almost twice the odds of providing support in toileting-related tasks than male caregivers (odds ratio (OR) = 1.98, 95% confidence interval (CI) = 1.01-3.85, P = 0.044), while male caregivers had approximately twice the odds of providing support in mobility-related tasks (OR = 0.41, 95% CI = 0.21-0.81, P = 0.011). Care recipients who had a female caregiver had lower odds of receiving support from family and friends in tasks associated with personal care (OR = 0.17, 95% CI = 0.05-0.53, P = 0.002). To address gender differences in caregiving, a realistic home-based palliative care approach must take into account the importance of informal caregivers. © 2008 Blackwell Publishing Ltd.

Stress processes in caring for an end-of-life family member:Application of a theoretical model

Objectives: Family caregivers play a vital role in maintaining the lives of individuals with advanced illness living in the community. However, the responsibility of caregiving for an end-of-life family member can have profound consequences on the psychological, physical and financial well-being of the caregiver. While the literature has identified caregiver stress or strain as a complex process with multiple contributing factors, few comprehensive studies exist. This study examined a wide range of theory-driven variables contributing to family caregiver stress. Method: Data variables from interviews with primary family caregivers were mapped onto the factors within the Stress Process Model theoretical framework. A hierarchical multiple linear regression analysis was used to determine the strongest predictors of caregiver strain as measured by a validated composite index, the Caregiver Strain Index. Results: The study included 132 family caregivers across south-central/western Ontario, Canada. About half of these caregivers experienced high strain, the extent of which was predicted by lower perceived program accessibility, lower functional social support, greater weekly amount of time caregivers committed to the care recipient, younger caregiver age and poorer caregiver self-perceived health. Conclusion: This study examined the influence of a multitude of factors in the Stress Process Model on family caregiver strain, finding stress to be a multidimensional construct. Perceived program accessibility was the strongest predictor of caregiver strain, more so than intensity of care, highlighting the importance of the availability of community resources to support the family caregiving role.

The challenge to health professionals when carers resist truth telling at the end of life: a qualitative secondary analysis

Aims and objectives: To draw out the similar complexities faced by staff around
truth-telling in a children’s and adult population and to interrogate the dilemmas faced by staff when informal carers act to block truth-telling.

Background: Policy encourages normalisation of death, but carers may act to protect or prevent the patient from being told the truth. Little is known about the impact on staff.

Design: Secondary analysis of data using a supra-analysis design to identify commonality of experiences.

Methods: Secondary ‘supra-analysis’ was used to transcend the focus of two primary studies in the UK, which examined staff perspectives in a palliative children’s and a palliative adult setting, respectively. The analysis examined new theoretical questions relating to the commonality of issues independently derived in each primary study. Both primary studies used focus groups. Existing empirical data were analysed thematically and compared across the studies.

Results: Staff reported a hiding of the truth by carers and sustained use of activities aimed at prolonging life. Carers frequently ignored the advance of end of life, and divergence between staff and carer approaches to truth-telling challenged professionals. Not being truthful with patients had a deleterious effect on staff, causing anger and feelings of incompetence.

Conclusions: Both children’s and adult specialist palliative care staff found themselves caught in a dilemma, subject to policies that promoted openness in planning for death and informal carers who often prevented them from being truthful with patients about terminal prognosis. This dilemma had adverse psychological effects upon many staff.

Relevance to clinical practice: There remains a powerful death-denying culture in
many societies, and carers of dying patients may prevent staff from being truthful with their patients. The current situation is not ideal, and open discussion of this problem is the essential first step in finding a solution.

'Conditional candour' and 'knowing me': an interpretive description study on patient preferences for physician behaviours during end-of-life communication

OBJECTIVE: To understand patients' preferences for physician behaviours during end-of-life communication.

METHODS: We used interpretive description methods to analyse data from semistructured, one-on-one interviews with patients admitted to general medical wards at three Canadian tertiary care hospitals. Study recruitment took place from October 2012 to August 2013. We used a purposive, maximum variation sampling approach to recruit hospitalised patients aged ≥55 years with a high risk of mortality within 6-12 months, and with different combinations of the following demographic variables: race (Caucasian vs non-Caucasian), gender and diagnosis (cancer vs non-cancer).

RESULTS: A total of 16 participants were recruited, most of whom (69%) were women and 70% had a non-cancer diagnosis. Two major concepts regarding helpful physician behaviour during end-of-life conversations emerged: (1) 'knowing me', which reflects the importance of acknowledging the influence of family roles and life history on values and priorities expressed during end-of-life communication, and (2) 'conditional candour', which describes a process of information exchange that includes an assessment of patients' readiness, being invited to the conversation, and sensitive delivery of information.

CONCLUSIONS: Our findings suggest that patients prefer a nuanced approach to truth telling when having end-of-life discussions with their physician. This may have important implications for clinical practice and end-of-life communication training initiatives.

'Talk to me': a mixed methods study on preferred physician behaviours during end-of-life communication from the patient perspective

Background
Despite the recognized importance of end-of-life (EOL) communication between patients and physicians, the extent and quality of such communication is lacking.

Objective
We sought to understand patient perspectives on physician behaviours during EOL communication.

Design
In this mixed methods study, we conducted quantitative and qualitative strands and then merged data sets during a mixed methods analysis phase. In the quantitative strand, we used the quality of communication tool (QOC) to measure physician behaviours that predict global rating of satisfaction in EOL communication skills, while in the qualitative strand we conducted semi-structured interviews. During the mixed methods analysis, we compared and contrasted qualitative and quantitative data.

Setting and Participants
Seriously ill inpatients at three tertiary care hospitals in Canada.

Results
We found convergence between qualitative and quantitative strands: patients desire candid information from their physician and a sense of familiarity. The quantitative results (n = 132) suggest a paucity of certain EOL communication behaviours in this seriously ill population with a limited prognosis. The qualitative findings (n = 16) suggest that at times, physicians did not engage in EOL communication despite patient readiness, while sometimes this may represent an appropriate deferral after assessment of a patient's lack of readiness.

Conclusions
Avoidance of certain EOL topics may not always be a failure if it is a result of an assessment of lack of patient readiness. This has implications for future tool development: a measure could be built in to assess whether physician behaviours align with patient readiness.