No second chance: junior neonatal nurses' experiences of caring for babies at the end-of-life and their families

Death of an infant is acutely stressful for parents and professionals. Little is known about junior nurses' experiences providing end-of-life care in Neonatal units (NNU). This study aimed to better understand junior nurses' experiences providing end-of-life care in NNU. Neonatal nurses (n = 12) with less than 3 years experience participated in a focus group. Nominal Group Technique (NGT) was used to build consensus around the challenges faced, alongside suggested developments in improving future care provision. Primary analysis involved successive rounds of ranking and decision-making whilst secondary analysis involved thematic analysis. All issues, whether environmental, professional or social appeared driven by an awareness on the part of nurses, that there was no ‘second chance’ which created a huge pressure to ‘get if right’ for the infants and families. Regarding future care 2 areas of improvement identified were ‘Education and Training’ and Support. This paper unpacks these findings making recommendations for practice.

“There’s a Catch-22”. The complexities of pain management for people with advanced dementia nearing the end of life: a qualitative exploration of physicians’ perspectives

Background: Pain management is a cornerstone of palliative care. The clinical issues encountered by physicians when managing pain in patients dying with advanced dementia, and how these may impact on prescribing and treatment, are unknown. Aim: To explore physicians’ experiences of pain management for patients nearing the end of life, the impact of these on prescribing and treatment approaches, and the methods employed to overcome these challenges. Design: Qualitative, semi-structured interview study exploring: barriers to and facilitators of pain management, prescribing and treatment decisions, and training needs. Thematic analysis was used to elicit key themes. Settings/Participants: Twenty-three physicians, responsible for treating patients with advanced dementia approaching the end of life, were recruited from primary care (n=9), psychiatry (n=7) and hospice care (n=7). Results: Six themes emerged: diagnosing pain, complex prescribing and treatment approaches, side-effects and adverse events, route of administration, importance of sharing knowledge and training needs. Knowledge exchange was often practised through liaison with physicians from other specialties. Cross-specialty mentoring, and the creation of knowledge networks were believed to improve pain management in this patient population. Conclusions: Pain management in end-stage dementia is complex, requiring cross-population of knowledge between palliative care specialists and non-specialists, in addition to collateral information provided by other health professionals and patients’ families. Regular, cost- and time-effective mentoring and ongoing professional development are perceived to be essential in empowering physicians to meet clinical challenges in this area.

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.

"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 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.

Vulnerability at the end of life: Australian veterans requiring home-based palliative care

In Australia, veterans are a vulnerable group, because of ageing, and high rates of chronic or life-threatening illnesses and poor mental health .This retrospective pilot study explored the home-based palliative care needs of veterans as they face the end of their life, compared to non-veterans. Medical records of ten deceased veterans and ten non-veterans in a home-based palliative care service were analyzed both for demographic data, and qualitative content. Veterans had significantly more comorbidities and were older at death. Qualitative data indicated common concerns, including the role of families and practical aspects of care. Some differences were found between veterans and non-veterans in their end-of-life care requirements. More awareness of veterans’ status may assist in care more tailored to their specific needs.

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 management of adult patients in an Australian metropolitan intensive care unit : a retrospective observational study

Background Death in the intensive care unit is often predictable. End of life management is often discussed and initiated when futility of care appears evident. Respect for patients wishes, dignity in death, and family involvement in the decision-making process is optimal. This goal may often be elusive. Purpose Our purpose was to review the end of life processes and family involvement within our Unit. Methods We conducted a chart audit of all deaths in our 10 bed Unit over a 12-month period, reviewing patient demographics, diagnosis on admission, patient acuity, expectation of death and not-for-resuscitation status. Discussions with the family, treatments withheld and withdrawn and extubation practices were documented. The presence of family or next-of-kin at the time of death, the time to death after withdrawal of therapy and family concerns were recorded. Results There were 70 patients with a mean age of 69 years. Death was expected in 60 patients (86%) and not-for-resuscitation was documented in 58 cases (85%). Family discussions were held in 63 cases (90%) and treatment was withdrawn in 34 deaths (49%). After withdrawal of therapies, 31 patients (44%) died within 6 h. Ventilatory support was withdrawn in 24 cases (36%). Family members were present at the time of death in 46 cases (66%). Family concerns were documented about the end of life care in only 1 case (1.4%). Conclusion Our data suggests that death in our Unit was often predictable and that end of life management was a consultative process.

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.

End of life clinician-family communication in ICU: a retrospective observational study - implications for nursing

Objective: The objective of this study was to identify practice issues that influence end of life communication and care of patients and families in the intensive care unit (ICU).

Design: This study used a retrospective observational approach utilising a medical record review. Setting: An Australian metropolitan mixed medical/surgical ICU. Subjects: There are two parts to this study. The first part related to all of the patients who died in the ICU in one calendar year, a total of 97. The second part of this study related to a random selection of 25% of these patients, a total of 24.

Results: This study showed that death in the ICU was often anticipated, and that whilst communication between family and medical personnel was evident in the medical record, the involvement or occurrence of communication between the nurse and the family was not recorded, and that nurses were included in only 25% of formal family meetings.

Conclusion: Whilst this study confirmed that death is often predicted for critically ill patients, and opportunities for communication with the family or next of kin assists to achieve consensus on end of life decisions, the involvement of nurses, as primary care-givers is not well represented in the medical record, thus undermining the importance of the nurses role in direct patient care that extends to the family in the ICU.