Audit of the Care of the Dying in a Network of Hospitals and Institutions in Queensland

Background: Most Australians die in institutions and there is evidence to suggest that the care of these patients is not always optimal. Care pathways for the dying have been designed to transfer benchmarked hospice care to other settings (e.g. acute hospitals and residential age-care facilities) by defining goals of best care, providing guidelines to provide that care and documenting outcome. Method: A retrospective audit was undertaken across a network of health-care institutions in Queensland. The 18 goals considered essential for the care of the dying within the Liverpool Care Pathway were taken as a benchmark. Documentation of achievement of each of these goals was sought. Results: The notes of 160 patients who had died in eight institutions (four hospitals, three hospices, one nursing home) were reviewed. Several areas for improvement were identified, particularly in those goals relating to communication, resuscitation orders and care after death. Few units documented the provision of written information to families. Most patients were prescribed medications in anticipation of pain and agitation but less were prescribed drugs for other common symptoms in the dying. Most of the goals were achieved in a higher percentage of cases in hospice units. Marked differences in practice were noted between different institutions. Conclusion: The audit identified several aspects in the care of the terminally ill that could be improved. End-stage pathways may provide a model for improving the care of patients dying in hospitals and institutions in Australia.

The 'dis-ease' of dying: challenges in nursing care of the dying in the acute hospital setting. A qualitative observational study

BACKGROUND: Changes in health care and an ageing population have meant that more people are dying in the acute hospital setting. While palliative care principles have resulted in quality care for the dying, many patients die in an acute care, still receiving aggressive/resuscitative care. AIMS: The aims were to explore nurses' 'recognition of' and 'responsiveness to' dying patients and to understand the nurses' influence on end-of-life care. DESIGN: A qualitative approach was taken utilising non-participant observation to elicit rich data, followed by focus groups and individual semi-structured interviews for clarification. SETTING/PARTICIPANTS: This study was conducted in two acute medical wards in one health service, identified as having the highest rates of death, once palliative care and critical care areas were excluded. Twenty-five nurses consented to participate, and 20 episodes of observation were conducted. RESULTS: Nurses took a passive role in recognising dying, providing active care until a medical officer's declaration of dying. Ward design, nurse allocation and nurses' attitude to death impacts patient care. End-of-life care in a single room can have negative consequences for the dying. Nurses demonstrated varying degrees of discomfort, indicating that they were underprepared for this role. CONCLUSION: When patients are terminally ill, acknowledgement of dying is essential in providing appropriate care. It should not be assumed that all nurses are adequately prepared to provide dying care. Further work is necessary to investigate how the attitudes of nurses towards caring for dying patients in the acute hospital setting may impact care of the dying patient.

General practitioners’ experiences of the psychological aspects in the care of a dying patient

Objective: General practitioners (GPs) play an integral role in addressing the psychological needs of palliative care patients and their families. This qualitative study investigated psychosocial issues faced by GPs in the management of patients receiving palliative care and investigated the themes relevant to the psychosocial care of dying patients. Method: Fifteen general practitioners whose patient had been recently referred to the Mt. Olivet Palliative Home Care Services in Brisbane participated in an individual case review discussions guided by key questions within a semistructured format. These interviews focused on the psychosocial aspects of care and management of the referred patient, including aspects of the doctor/patient relationship, experience of delivering diagnosis and prognosis, addressing the psychological concerns of the patients' family, and the doctors' personal experiences, reactions, and responses. Qualitative analysis was conducted on the transcripts of these interviews. Results: The significant themes that emerged related to perceived barriers to exploration of emotional concerns, including spiritual issues, and the discussion of prognosis and dying, the perception of patients' responses/coping styles, and the GP's personal experience of the care (usually expressed in terms of identification with patient). Significance of results: The findings indicate the significant challenges facing clinicians in discussions with patients and families about death, to exploring the patient's emotional responses to terminal illness and spiritual concerns for the patient and family. These qualitative date indicate important tasks in the training and clinical support for doctors providing palliative care.

Nursing care for the families of the dying child/infant in paediatric and neonatal ICU: Nurses’ emotional talk and sources of discomfort. A mixed methods study

BACKGROUND: The majority of in-hospital deaths of children occur in paediatric and neonatal intensive care units. For nurses working in these settings, this can be a source of significant anxiety, discomfort and sense of failure.

OBJECTIVES: The objectives of this study were to explore how NICU/PICU nurses care for families before and after death; to explore the nurses' perspectives on their preparedness/ability to provide family care; and to determine the emotional content of language used by nurse participants.

METHODS: Focus group and individual interviews were conducted with 22 registered nurses from neonatal and paediatric intensive care units of two major metropolitan hospitals in Australia. All data were audio recorded and transcribed verbatim. Transcripts were then analysed thematically and using Linguistic Inquiry to examine emotional content.

RESULTS: Four core themes were identified: preparing for death; communication challenges; the nurse-family relationship and resilience of nurses. Findings suggested that continuing to provide aggressive treatment to a dying child/infant whilst simultaneously caring for the family caused discomfort and frustration for nurses. Nurses sometimes delayed death to allow families to prepare, as evidenced in the Linguistic Inquiry analysis, which enabled differentiation between types of emotional talk such as anger talk, anxiety talk and sadness talk. PICU nurses had significantly more anxiety talk (p=0.018) than NICU nurses.

CONCLUSION: This study provided rich insights into the experiences of nurses who are caring for dying children including the nurses' need to balance the often aggressive treatments with preparation of the family for the possibility of their child's death. There is some room for improvement in nurses' provision of anticipatory guidance, which encompasses effective and open communication, focussed on preparing families for the child's death.

Nursing care of the family before and after a death in the ICU - an exploratory pilot study

This qualitative descriptive study was undertaken in two metropolitan ICUs utilising focus groups to describe the ways in which ICU nurses care for the families of dying patients during and after the death. Participants shared their perspectives on how they care for families, their concerns about care, and detailed the strategies they use to provide timely and person-centred family care. Participants identified that their ICU training was inadequate in equipping them to address the complex care needs of families leading up to and following patient deaths, and they relied on peer mentoring and role-modelling to improve their care. Organisational constraints, practices and pressures impacting on the nurse made ‘ideal’ family care difficult. They also identified that a lack of access to pastoral care and social work after hours contributed to their concerns about family care. Participants reported that they valued the time nurses spent with families, and the importance of ensuring families spent time with the patient, before and after death.

Nursing care of the mechanically ventilated patient: what does the evidence say? Part one.

The care of the mechanically ventilated patient is at the core of a nurse's clinical practice in the Intensive Care Unit (ICU). Published work relating to the numerous nursing issues of the care of the mechanically ventilated patient in the ICU is growing significantly. Literature focuses on patient assessment and management strategies for patient stressors, pain and sedation. Yet this literature is fragmentary by nature. The purpose of this paper is to provide a single comprehensive examination of the evidence related to the care of the mechanically ventilated patient. In part one of this two-part paper, the evidence on nursing care of the mechanically ventilated patient is explored with specific focus on patient safety: particularly patient and equipment assessment. Part two of the paper examines the evidence related to the mechanically ventilated patient's comfort, the patient/family unit, patient position, hygiene, management of stressors, pain management and sedation.

Nursing care of the mechanically ventilated patient: What does the evidence say?: Part two

The care of the mechanically ventilated patient is a fundamental component of a nurse's clinical practice in the intensive care unit (ICU). Published work relating to the numerous nursing issues of the care of the mechanically ventilated patient in the ICU is growing significantly, yet is fragmentary by nature. The purpose of this paper is to provide a single comprehensive examination of the evidence related to the care of the mechanically ventilated patient. In part one of this two-part paper, the evidence on nursing care of the mechanically ventilated patient was explored with specific focus on patient safety: particularly patient and equipment assessment. This article, part two, examines the evidence related to the mechanically ventilated patient's comfort: patient position, hygiene, management of stressors (such as communication, sleep disturbance and isolation), pain management and sedation.

Parent decisions regarding paid work and care of the child

Australia has witnessed a continual increase in maternal employment over the past two decades, which has placed focus on child care- its effects on the child and on early childhood education and care policy and provision. The engagement of women in the paid workforce contributes to national economic development, and is recognised in government policy incentives such as cash subsidies and tax relief for child care fees. These incentives are targeted towards mothers, to encourage them to engage in paid work. Making a contribution to the family’s economy and to a mother’s economic self sufficiency are two key drivers for women’s engagement in satisfying paid work. Many women also seek to maintain a personal investment in the development of their career, simultaneously ensuring that the child is experiencing suitable care. Policies that support women’s choices for satisfying workforce engagement and care arrangements are prudent for ensuring productivity of the economy as well as for enhancing the wellbeing of parents and children (OECD, 2007). Policies that provide family friendly employment arrangements, paid parental leave, and child care support, directly affect maternal employment decisions. Availability of family friendly employment policies is viewed as one way to not only promote gender equity in employment opportunities but also support the wellbeing of children and families (OECD, 2007). Yet there are not comprehensive and coherent policies on work and family in Australia. Australia is due to implement its first paid parental leave scheme in January, 2011. At the time of the data collection of this research, June 2007 to December 2008, Australia had no statutory provision for paid parental leave. To date, most research has focused on the consequences of paid work and care decisions made by women. Far less is known about the processes of decision-making and reasons underlying women’s choices. Investigation of what is most salient for women as they make decisions regarding engagement in paid work, and care for their child is important in order to inform policy and practices related to parental leave, family friendly employment and care for the child. This prospective longitudinal research was of 124 Australian expectant first-time mothers who completed questionnaires in their third trimester of pregnancy, and again at six and twelve months postpartum. First-time expectant mothers' decisions regarding engaging in paid work and selecting care for their child represent those of a group who are invested in motherhood and have usually had direct experience of engaging in paid work. They therefore provide an important insight into society’s idealised views about motherhood and the emotional and social uncertainty of making personal decisions where the consequences of such decisions are unknown. These decisions reflect public beliefs about the role of women in contributing to the country’s productivity and decisions about providing for the economic and emotional care needs of their family. As so little is known about the reasoning and processes of decision-making of women’s choices regarding paid work and care of the child this research was designed to capture expectant first-time mother’s preferred options for engaging in paid work and the care of their child, and investigate their actual decisions made at six and 12 months postpartum. To capture preferred options, decisions and outcomes of decisions regarding paid work and care of the child a prospective longitudinal research design was utilised. This design had three important components that addressed key limitations in the extant literature. First the research commenced in pregnancy in order to investigate preferences and beliefs about paid work and care and to examine baseline data that may influence decisions made as the women returned to paid work. Second the research involved longitudinal tracking from the antenatal time point to six and 12 months postpartum in order to identify the influences on decisions made. Third the research measured outcomes of the decisions made at each time point. This research examined the intentions, preferences, beliefs, influences, and outcomes of the decisions about engagement in paid work and choice of care. The analyses examined factors predicting return to paid work, the timing of return and extent of engagement in paid work; the care for the child; satisfaction with paid work; satisfaction with care for the child, motherhood and fulfilment; and maternal wellbeing at six and 12 months postpartum. The factors of interest were both rational/economic (availability and extent of paid and unpaid maternity leave; flexible work patterns) and emotional/affective (career satisfaction, investment in motherhood, and concern with quality of care for the child). Results indicated a group preference, and realisation for, return to paid work within the first year after the birth of a child but with reduction in hours to part-time. Most women saw paid work not only as a source of income but also as source of personal satisfaction. There were four key themes arising from this research. First, the women strived to feel emotionally secure when deciding about engaging in paid work and care of the child. To achieve emotional security women made their decisions for paid work and care of the child differently. A woman’s decision for maternal employment is a function of her personal beliefs, preferences and context regarding paid work and care of the child. She adjusts her established work identity with her new identity as a mother. The second key theme from this research is that the women made their decisions for maternal employment in response to their personal context and there were different levels of opportunities between the women’s choices. There is inequity of entitlement regarding work conditions associated with a woman’s education level. This has implications for the woman’s engagement in paid work, and her child’s health and wellbeing. The third key theme is that the quality of the child’s care mattered to the women in the research. They preferred care provided by parents and/or relatives more than any other types of care. The fourth key theme identified that satisfaction and wellbeing outcomes experienced as a result of maternal employment decisions were a complex interaction between multiple factors that change across time with the ongoing development of the mother’s identity, and the development of the child. The implications for policy within Australia are that the employment of mothers in the workforce necessitates that non-parental care becomes a public concern, where there is universal access to good quality affordable care for every child, not just for those who can afford it. This is equitable and represents real choice while supporting the rights of the child (Thorpe, Cloney & Tayler, 2010), protecting and promoting the public interest (Cleveland & Krashinsky, 2010). Children’s health and wellbeing will be supported (Moore & Oberklaid, 2010) while children are in non-parental care, and they will be exposed to environments and experiences that support their learning and development. The significant design of the research enabled the trajectories of first-time expectant women to be tracked from the antenatal point to 12 months postpartum. But there were limitations: the small sample size, the over-representation of the sample being highly educated and the nature of a longitudinal research that is set within the economic, social and political context at that time. These limitations are discussed in relation to suggestions for future research.

Essential nursing care of the critically ill patient

This chapter is about essential nursing care. Because it is often referred to as basic nursing, nurses may not always perceive it as deserving of priority. Yet, how well patients are cared for has a direct effect on their sense of wellbeing and their recovery. ‘Interventional patient hygiene’ is a systematic, evidence-based approach to nursing actions designed to improve patient outcomes using a framework of hygiene, catheter care, skin care, mobility and oral care.1 This chapter focuses on the physical care, infection control, preventative therapies and transport of critically ill patients. The first two areas are closely linked: poor-quality physical care increases the risk of infection. The final areas are essential features of critical care nursing.