End-of-life care: identifying an appropriate legal framework for specialist palliative care in Ireland

This thesis argues that the legal framework in Ireland for specialist palliative care is inadequate and consequently a more appropriate legal framework must be identified. This research is guided by three central research questions. The first central research question examines the legitimacy of the distinction between specialist palliative care and euthanasia. The second central research question asks what legal framework currently exists in Ireland for specialist palliative care. The third central research question examines an alternative legal framework for specialist palliative. This thesis is composed of seven chapters. The first Chapter is an introduction to the thesis and defines the terminology and the central research questions. Chapter Two explores the development and practice of palliative care in Ireland. Chapter Three examines the distinction in criminal law between specialist palliative care practices and euthanasia. Chapter Four examines the human rights framework for specialist palliative care. Chapter Five critiques the regulatory framework in Ireland for specialist palliative care. Having gained a thorough understanding of palliative care and the related legal framework, this thesis then engages in comparative analysis of the Netherlands which is used as a source of ideas for reform in Ireland. Chapter Seven is the concluding chapter and, in it, the main findings of this thesis are summarised. The main findings being that: the distinction between specialist palliative care and euthanasia is not sufficiently supported by justifications such as a double effect or the acts and omissions distinction, there is no clear decision-making framework in Ireland for specialist palliative care, and the current legal framework lacks clarity and does not promote consistency between providers of specialist palliative care. This Chapter also proposes that detailed professional standards and guidelines are likely to be the most appropriate way to effect individual and institutional change in the provision of specialist palliative care.

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.

Podcast: After the Liverpool Care Pathway clear guidance and support on end-of-life care is needed

In this podcast Roberta Heale talks to Dr Peter O'Halloran about the paper "After the Liverpool Care Pathway clear guidance and support on end-of-life care is needed." They discuss the newly implemented pathways and the effects these have on practice and patients.

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.

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.

End-of-life care in an Australian rehabilitation facility for older people: staff focus groups

A qualitative study of staff experiences of end-of-life care for older people in a subacute rehabilitation facility was undertaken using three focus groups with senior multidisciplinary staff (5), junior nurses (8), and junior allied health staff (7). Content analysis revealed four major themes: being a key contact person; the quality of end–of-life care; referring to off-site service providers; and differing perspectives. These data have implications for multidisciplinary practice including staff education and capacity to change focus of care in facilities for older people dedicated to rehabilitation rather than palliation or end-of-life care.

End-of-life care in a rehabilitation centre for older people in Australia

Aim
To investigate processes at the end of life for patients who died in a subacute evaluation and management facility for older people.

Methods
A retrospective chart audit for patients (n = 55) who died in the previous 2 years was undertaken, recording a number of significant variables.


Results
Despite diagnosis of comorbid medical conditions, most participants were admitted for improved functioning or assessment for alternative accommodation. Consistent with this focus, the key contact person was most often an allied health team member. Not For Resuscitation order and/or power of attorney documents on admission were uncommon (<30%) as were referrals to palliative care specialist staff (13%), although an end-of-life discussion was recorded (90%) and often included as a new goal of care (71%).

Conclusion
Factors likely to improve end-of-life care include advance care planning, earlier recognition of short prognosis and staff education.

End of life care - the importance of advance care planning

Background: Communication about end of life care may involve difficult conversations for patients, family members and health professionals. However, a lack of understanding of a person's wishes about their future care may result in a loss of dignity for the person, and additional distress for their family members and health professionals and burden to the healthcare system. Objective: This article discusses the barriers to advance care planning and provides some guidance for the general practitioner in undertaking advance care planning with patients and their families. Tips for initiating end of life discussions with patients and families utilising the 'PREPARED' acronym, and ensuring appropriate care delivery are included. Discussion: Involving patients and their family members in advance care planning may be challenging and time consuming for GPs. However, there are a number of resources to support this activity in relation to training, communication support and Medicare item funding.

Providing end-of-life care in the intensive care unit : issues that impact on nurse professionalism

With death a frequent event in intensive care units how, people die and the impact on family and staffs is becoming increasingly recognised as an issue requiring significant attention. Caring for a dying patient in these environments challenges the dominant ethos of seeking to cure critically ill patients. Family members require particular care as they keep vigil with their loved one and this forms a major area of work and concern for nurses. Mortality rates are higher in intensive care units than in most other settings and this impacts on staff. This paper builds on a qualitative exploratory study utilising focus groups that was undertaken to describe how nurses support family members during and after a death in the intensive care unit. This study identified issues that challenged the nurses' ability to maintain professionalism and the ways in which nurses ensured self-care. They highlighted organisational constraints, support for families and for their nursing colleagues as important issues for discussion.