Advocacy at end-of-life research design: an ethnographic study of an ICU

BACKGROUND: Clinicians worldwide are being called upon to reconcile accountability for patient outcomes with the resources they consume. In the case of intensive care, contradictory pressures can arise in decisions about continuing treatment where benefit is diminishing. As concern grows about the cost effectiveness of treatment at end-of-life, nursing expertise and advocacy become significant factors in decision making. OBJECTIVES: To explore the potential for a nursing advocacy role within a specific regime of nursing practice: end-of-life care; specifically to examine the concept of nursing advocacy from the literature, to consider its application in the workplace and to assess the capacity for nurses to advocate for people who die in institutions such as intensive care units. DESIGN: Open-ended interviews with nurse managers and educators (4), palliative care specialists (2), chaplain (1), medical managers (2), intensives (7); focus groups with nurses (4 focus groups and 29 participants); patient case studies (13); observation of family conferences (6 conferences and 15 participants); observation of ward rounds (3 ward rounds and 11 participants). Total number of participants: 84. SETTING: A large ICU in a principal referral and teaching hospital in Sydney, Australia. PARTICIPANTS: Clinical staff within, and clinical and non-clinical caregivers external to the unit. METHOD: Qualitative, ethnographic study. RESULTS: Spurious economic imperatives, primacy given to medical intervention, conflict between medical and nursing clinicians about patient management and absence of nursing operational autonomy and organizational authority, impede the opportunity for nurses to define and enact an advocacy role. CONCLUSIONS: If nurses are to be effective patient advocates at end-of-life, they will need to develop clear criteria within which nursing assessments of patient status can be framed, the specialized skills to manage the non-medical needs of dying people and the organizational and political skills to negotiate changing clinical practice and workplace relations.     

Nursing advocacy: how is it defined by patients and nurses,what does it involve and how is it experienced?

THE STUDY'S RATIONALE: Advocacy is an integral part of nursing. However, there is a scarcity of empirical evidence on nursing advocacy process and most of that evidence concerns nurses' views on the care of certain vulnerable patient groups in acute care settings. Before nursing practice can truly adopt advocacy as an inherent and natural part of nursing, a clearer understanding is needed of how it is defined and what activities are needed to accomplish advocacy. AIMS AND OBJECTIVES: The aim was to describe the way that nursing advocacy is defined, the activities through which nursing advocacy is accomplished and the way that nursing advocacy is experienced by patients and nurses. METHODOLOGICAL DESIGN AND JUSTIFICATION: Based on a qualitative approach, the study was limited to adult patients experiencing procedural pain in somatic care. Interviews were conducted in a convenience sample of patients (n = 22) and nurses (n = 21) from four medical and four surgical wards in Finland. A qualitative content analysis of the tape-recorded data was then carried out. ETHICAL ISSUES AND APPROVAL: The appropriate ethical principles were followed. All the participants gave their informed consent and formal approval for conducting the research was obtained according to national and local directives. RESULTS: Nursing advocacy seems to integrate aspects of individuality, professionalism and experiences of empowering, exceptional care. It is not a single event, but a process of analysing, counselling, responding, shielding and whistleblowing activities in clinical nursing practice. CONCLUSIONS: In nursing practice the abstract concept of nursing advocacy finds expression in voicing responsiveness, which integrates an acknowledged professional responsibility for and active involvement in supporting patients' needs and wishes.     

Beyond profession: nursing leadership in contemporary healthcare

Aim(s)  To examine nursing leadership in contemporary health care and its potential contribution to health service organization and management.
Background  As the nursing profession repositions itself as an equal partner in health care beside medicine and management, its enhanced nursing standards and clinical knowledge are not leading to a commensurate extension of nursing's power and authority in the organization.
Method(s)  An ethnographic study of an ICU in Sydney, Australia, comprising: interviews with unit nursing managers (4); focus groups (3) with less experienced, intermediate and experienced nurses (29 in total); and interviews with senior nurse manager (1).
Results  Inter- and intra-professional barriers in the workplace, fragmentation of multidisciplinary clinical systems that collectively deliver care, and clinical and administrative disconnection in resolving organizational problems, prevented nurses articulating a model of intensive and end-of-life care.
Conclusion(s)  Professional advocacy skills are needed to overcome barriers and to articulate and operationalize new nursing knowledge and standards if nurses are to enact and embed a leadership role.
Implications for nursing management  The profession will need to move beyond a reliance on professional clinical models to become skilled multidisciplinary team members and professional advocates for nurses to take their place as equal partners in health care.     

Patient advocacy and advance care planning in the acute hospital setting.

OBJECTIVE: The aim of this study was to explain the role of patient advocacy in the Advance Care Planning (ACP-ing) process. Nurses rate prolonging the dying process with inappropriate measures as their most disturbing ethical issue and protecting patients' rights to be of great concern (Johnston et al 2002). Paradoxically ethical codes assume nurses have the autonomy to uphold patients' health-care choices. Advance Directives (AD) designed to improve end-of-life care are poorly taken up and acute hospitals are generally not geared for the few they receive. The Respecting Patient Choices Program (RPCP) improves AD utilisation through providing a supportive framework for ACP-ing and primarily equipping nurses as RPC consultants. Assisting patients with this process requires attributes consistent with patient advocacy arising out of nursing's most basic tenet, the care of others. DESIGN: Likert Scales survey administered pre and six months post-intervention to pilot and control groups, with coinciding focus groups. SETTING: Selected wards in an acute care public hospital in South Australia. SUBJECTS: Nurses on the palliative care, respiratory, renal and colo-rectal pilot wards and the haem-oncology, coronary care, cardiology and neurology/geriatric control wards. INTERVENTION: The RPCP during the 2004-2005 South Australian pilot of the (RPCP). MAIN OUTCOMES: The organisational endorsement of ACP-ing gave nurses the autonomy to be patient advocates with respect to end-of-life care, reconciling clinical practice to their code of ethics and easing distress about prolonging the dying process inappropriately. RESULTS: Statistically significant survey results in the post-intervention group showed nurses experienced: encouragement to ensure patients could make informed choices about their end-of-life treatment (84%); the ability to uphold these wishes in practice (73%); and job satisfaction from delivering appropriate end-of-life care (67%); compared to approximately half (42-55%) of respondents in the pre-intervention and control groups. Focus group participants shared that it used to be hard to advocate for patients, but now they could act legitimately and felt ethically comfortable about ensuing end-of-life-care. CONCLUSION: Findings suggested patient advocacy, fostered by the supportive RPC environment, effectuates the ACP-ing process. It is recommended that the RPCP should be recognised and developed as integral to promoting quality end-of-life assurance and associated job satisfaction.     

Effects of advance care planning training on advanced practice nurse students’ knowledge,confidence, and perception of end-of-life care: A mixed-method study

AimsThis study aimed to assess how an advance care planning training program affected advanced practice nursing students’ knowledge, confidence and perception of end-of-life care in South Korea.BackgroundEffective communication between healthcare providers, patients and their families is one of the most important components of quality end-of-life care. However, nurses in South Korea may feel uncomfortable helping patients and families with advance care planning because of the cultural taboo against talking about dying.DesignA mixed-method design was used with data obtained from self-administered questionnaires at the onset and end of the advance care planning training program and qualitative data from participant feedback after the program.MethodsData collected from 65 advanced practice nursing students who participated in advance care planning training programs in June-July 2020 and 2021, conducted as part of a graduate clinical practice course, were analyzed. Data were originally collected to examine students’ course outcomes. A training program was provided to advanced practice nursing students to improve their knowledge, confidence and perception in advance care planning conversations with their patients. The program comprised three sessions: online lectures, face-to-face simulations and discussions on advance care planning and ethical issues. Changes in advance care planning knowledge, confidence in supporting patients’ advance directives, perceived nursing roles in end-of-life treatment decisions and perception of a good death were examined before and after the training.ResultsThere were statistically significant increases in participants’ advance care planning knowledge, confidence in supporting patients’ advance directives and perception of the active role of nurses in patients’ end-of-life treatment decisions after the training.ConclusionsThe results indicate the effects of training programs on advanced practice nursing students’ knowledge, confidence and perception of advance care planning communication. They also provide evidence about what contents and methods can be helpful in developing end-of-life care training for advanced practice nursing students.     

End-of-life care in the intensive care unit: a challenge for nurses.

Results from several research studies combined with increasing public tensions surrounding physician-assisted suicide have fueled a growing awareness of the inadequacies of end-of-life care. Investigators also suggest that intensive care unit nurses have a limited role in end-of-life decision making and care planning. This article explores cultural issues influencing end-of-life care in intensive care units, explores factors surrounding the limited involvement of critical care nurses in end-of-life decision making and care planning, and offers recommendations for changing nursing practice. Because improving end-of-life care will require cultural changes, an understanding of the cultural issues involved is needed. Recommendations for changing nursing practice include a model of end-of-life care that incorporates the goals of both cure and comfort care, as well as a shared decision-making process. Nurses are essential to improving end-of-life care in today's intensive care units.     

A national Position Statement on adult end-of-life care in critical care

Patient death in critical care is not uncommon. Rather, the provision of end-of-life care is a core feature of critical care nursing, yet not all nurses feel adequately prepared for their role in the provision of end-of-life care. For this reason, the Australian College of Critical Care Nurses (ACCCN) supported the development of a Position Statement to provide nurses with clear practice recommendations to guide the provision of end-of-life care, which reflect the most relevant evidence and information associated with end-of-life care for adult patients in Australian critical care settings. A systematic literature search was conducted between June and July, 2020 in CINAHL Complete, Medline, and EMBASE databases to locate research evidence related to key elements of end-of-life care in critical care. Preference was given to the most recent Australian or Australasian research evidence, where available. Once the practice recommendations were drafted in accordance with the research evidence, a clinical expert review panel was established. The panel comprised clinically active ACCCN members with at least 12 months of clinical experience. The clinical expert review panel participated in an eDelphi process to provide face validity for practice recommendations and a subsequent online meeting to suggest additional refinements and ensure the final practice recommendations were meaningful and practical for critical care nursing practice in Australia. ACCCN Board members also provided independent review of the Position Statement. This Position Statement is intended to provide practical guidance to critical care nurses in the provision of adult end-of-life care in Australian critical care settings.     

Methodological issues in researching palliative care nursing practice.

The purpose of this integrative review was to describe the research conducted by nurses since the mid-1990s on nursing practice in the context of palliative/end-of-life care, identify promising methodological developments as well as methodological challenges, and propose strategies to support the development of this field of nursing research. A search of databases resulted in 121 research reports published between 1995 and 2003. Studies were included if the lead author was a nurse and the focus was nursing practice or nurses' attitudes about providing palliative or end-of-life care. Relatively few studies included patients, there were limitations in the data-collection methods used, and there was a lack of studies evaluating palliative care nursing. An emphasis on the interdisciplinary nature of palliative care may be hindering nurses from examining the effectiveness of nursing interventions. Increased attention should be given to examining the efficiency and effectiveness of nursing interventions to ensure the best outcomes for patients and their families.     

The lived experience of nursing advocacy

Nursing advocacy for patients is considered to be an essential component of nursing practice. This phenomenological qualitative pilot study explored registered nurses' lived experience of nursing advocacy with patients using a sample of three medical-surgical registered nurses. The guiding research questions were: (1) how do registered nurses practicing in the medical-surgical specialty area describe their experiences with nursing advocacy for their patients; and (2) what reflections on educational preparation for their professional roles do registered nurses identify as related to their practices of nursing advocacy with their patients? Data analysis procedures were based on Moustakas' data analysis method, and Lincoln and Guba's criteria were applied for rigor. The emergent themes were: speaking out and speaking for patients; being compelled to act on unmet needs of patients; fulfillment and frustration; the patient is changed; primarily learned on the job; and confidence gained through practice. The findings increase the body of knowledge surrounding nursing advocacy as practiced by nurses.     

Spiritual caring: end of life in a nursing home

The purpose of this qualitative study was to explore spiritual care for dying nursing home residents from the perspectives of registered nurses, practical nurses, certified nursing assistants, advanced practice nurses, and physicians. Five major themes emerged: honoring the person's dignity, intimate knowing in the nursing home environment, wishing we could do more, personal knowing of self as caregiver, and struggling with end-of-life treatment decisions. Spiritual caring was described within the context of deep personal relationships, holistic care, and support for residents. Spiritual care responses and similarities and differences in the experiences of participants are presented. Education and research about how to assist residents and families as they struggle with difficult end-of-life decisions, adequate time and staff to provide the kind of care they "wished they could," and development of models that honor the close connection and attachment of staff to residents could enhance end-of-life care in this setting.     

Patient advocacy and professional associations: individual and collective responsibilities

Professions have traditionally treated advocacy as a collective duty, best assigned to professional associations to perform. In North American nursing, advocacy for issues affecting identifiable patients is assigned instead to their nurses. We argue that nursing associations' withdrawal from advocacy for patient care issues is detrimental to nurses and patients alike. Most nurses work in large institutions whose internal policies they cannot influence. When these create obstacles to good care, the inability of nurses to affect change can result in avoidable distress for them and for their patients. We illustrate this point with a case study: the circumstances of the death of Michael Joseph LeBlanc, an inmate at Kingston Penitentiary Regional Hospital (Ontario). We conclude that patient and their nurses will suffer unnecessarily unless or until nursing associations cease to burden individual nurses with the responsibility for patient advocacy.     

Theory inspired practice for end-of-life cancer care: an exploration of the McGill Model of Nursing

Nursing theories provide inspiration for practice by describing how to meet needs, enhance wellness, and respond to clients as whole persons. This paper discusses the McGill Model of Nursing with reference to how its ideas can support nursing practice for patients with cancer during the end-of-life phase. We suggest this model provides for a relational approach that is congruent with the philosophy of palliative care. The goal of this paper is to stimulate reflection amongst oncology nurses and nursing leaders. By comparing the value base of our practice against extant nursing theory, we may discover new opportunities for teaching and learning about what it means to be an end-of-life care nurse.     

Nurses' perspectives on the distinctive aspects of providing nursing care in a congregational setting

As the number of parish nurses grow, it is important to understand the unique attributes of providing nursing care in a congregation. Through a focus group and interviews, this qualitative research study explored this question with 17 parish nurses participating in a hospital-sponsored, volunteer health ministry program. Content analysis revealed the nurses felt they had the greatest impact through health promotion and prevention, advocacy, health education, and health counseling, including psychosocial support and spiritual care. The nurses appreciated the unique opportunities afforded by the congregational setting including integrating faith and health in nursing practice, the more relaxed environment, the opportunity for long-term relationships, and the level of professional autonomy. Challenges were experienced from the client's autonomy, the impact of religious beliefs, the nurse's worship experience, and time constraints. This study demonstrates that parish nurses can provide a valuable adjunct to the traditional care system as they practically and conceptually integrate faith and health.     

The content of advocacy in procedural pain care – patients’ and nurses’ perspectives

Title. The content of advocacy in procedural pain care ‐ patient’ and nurses’ Perspectives. Aim. This paper is a report of an exploration of the content of nursing advocacy from the point of view of patients and nurses in the context of procedural pain care. Background. Nursing advocacy is every nurse’s professional duty, grounded in patients’ legal and moral rights. Nevertheless, earlier research has approached advocacy as a whistle‐blowing event from the nurse’s perspective. Method. This cross‐sectional study was conducted with a cluster sample of otolaryngology patients (n = 405) and nurses (n = 118) in 11 hospital units in Finland during 2007. The data were collected using an instrument measuring the content of advocacy and analysed statistically. Results. Advocacy in procedural pain care is a process which takes place in the patient–nurse relationship through role identification in decision‐making about pain care. This prompts counselling and responding activities, which in turn lead to some degree of empowerment on the part of both patient and nurse. However, advocacy is partly dependent on the nurse’s own role identification: in the context of pain care it seems that the nurse’s pain care skills and influence over pain care plans are important factors in the decision to advocate or not. At best, patients have some role in decision‐making about their care; at worst, they are subjected to paternalism. Conclusions. Advocacy is an integral part of the nursing care process. It is important that this key ethical aspect of professional nursing is discussed in nursing education and systematically applied in nursing practice through on‐the‐job training, feedback and collaboration.     

Autonomy and advocacy in perinatal nursing practice

Advocacy has been positioned as an ideal within the practice of nursing, with national guidelines and professional standards obliging nurses to respect patients' autonomous choices and to act as their advocates. However, the meaning of advocacy and autonomy is not well defined or understood, leading to uncertainty regarding what is required, expected and feasible for nurses in clinical practice. In this article, a feminist ethics perspective is used to examine how moral responsibilities are enacted in the perinatal nurse-patient relationship and to explore the interaction between the various threads that influence, and are in turn affected by, this relationship. This perspective allows for consideration of contextual and relational factors that impact on the way perinatal nursing care is given and received, and provides a framework for exploring the ways in which patient autonomy, advocacy and choice are experienced by childbearing women and their nurses during labour and birth.     

Nurses' ethical conflicts: what is really known about them?

The purpose of this article is to report what can be learned about nurses' ethical conflicts by the systematic analysis of methodologically similar studies. Five studies were identified and analysed for: (1) the character of ethical conflicts experienced; (2) similarities and differences in how the conflicts were experienced and how they were resolved; and (3) ethical conflict themes underlying four specialty areas of nursing practice (diabetes education, paediatric nurse practitioner, rehabilitation and nephrology). The predominant character of the ethical conflicts was disagreement with the quality of medical care given to patients. A significant number of ethical conflicts were experienced as 'moral distress', the resolution of which was variable, depending on the specialty area of practice. Ethical conflict themes underlying the specialty areas included: differences in the definition of adequacy of care among professionals, the institution and society; differences in the philosophical orientations of nurses, physicians and other health professionals involved in patient care; a lack of respect for the knowledge and expertise of nurses in specialty practice; and difficulty in carrying out the nurse's advocacy role for patients.     

End of life and ethnicity.

The anticipated rise in the elderly population with chronic and life-threatening illness has been well documented. The purpose of this article is to recommend educational programs in end-of-life care, with an emphasis on culture and therapeutic responses to terminally ill patients to help nurses facilitate end-of-life discussions, consultation, and advocacy.