A/Prof. Kaye Spence, Clinical Nurse Consultant, Grace Centre for Newborn Care, The Children's Hospital at Westmead, Locked Bag 4001, Westmead, 2145, Australia. Fax: 02-98452251; email: firstname.lastname@example.org
Advocacy has been identified as an ideal in nursing practice. National codes (Australian Nursing and Midwifery Council) and professional standards (Australian College of Neonatal Nurses) state that nurses are to respect their patients' autonomous choices and act as their advocates. This responsibility includes acting as advocates for the needs and welfare of patients, for the profession of nursing and for the interests of colleagues in nursing. However, ambiguous interpretations of the concept of patient advocacy continue to pose a number of problems for nurses in practice and in particular neonatal practice. Neonatal nurses often perceive themselves primarily as advocates for the rights of helpless and vulnerable infants in their care. Advocacy is underpinned by caring, which is a significant feature in the delivery of quality care for each baby and child. This advocacy may be expressed at the bedside, in committee meetings, in agency discussions or in the public arena.
The paper aims to explore the concept of patient advocacy and to consider how neonatal and paediatric nurses caring for infants can be advocates when ethical issues arise in their practice. This maybe both proactive or reactive.1 In addition, advocacy may take place for individual patients or be part of a collective for the neonatal and paediatric nursing professions.2
Since the 1970s, advocacy has been a common theme in nursing ethics3–7 and is seen as an effective method of empowering nurses in their professional roles. Patient advocacy provides a way for nurses to support and to protect their patients' interests,8 and the relationship between nurses and their patients provides the moral basis of nursing practice.9 Others see patient advocacy as strengthening the nurse–patient relationship.10–12
1Patient advocacy is inherent in the role of neonatal and paediatric nurses.
2A model of existential advocacy based on caring is suitable for neonatal and paediatric nurses.
3Nurses need to be involved in ethical discussions with the medical team to ensure they have an understanding of all concepts in being advocates.
Models of Advocacy
For this paper, my meaning of advocacy is for nurses to act and/or intercede in the best interest of patients.13 However, there are different perspectives of patient advocacy, ranging from protection of the patients' rights,8 to one of ensuring comfort and protection for the patient who cannot communicate5 to one of participating in ethical forums to ensure a unique perspective of collaborative ethical dialogue. Much of the literature discusses patient advocacy as an adversarial role. However, if an ethic of care is part of the philosophy of nursing, the focus of advocacy becomes clearer. Through caring ethics, the patient is seen as an individual person with needs, desires and interests that become central for nurses advocating for them.
When examining advocacy in the nursing literature, there are broad and at times different perspectives. Advocacy has been described in both ethical and legal frameworks and, more recently, as a philosophical foundation for nursing practice. The advocacy role for neonatal and paediatric nurses often extends to include the parents and families of their infant patients.5 The use of a model of existential advocacy14 supports such an extension to parents. In this approach, the ethic of care is an ideal that enhances the experience of individuals whose human values can change with illness and they may need help in clarifying those changes over time. When nurses are involved in supporting parents through their child's illness, suffering and dying, and through decisions concerning their treatments and future, they may do as an existential advocate.
Caring as a Foundation for Advocacy
Care of others is nursing's most basic tenet, in which patient advocacy is ethically grounded.
There are two different foci of caring, one is a sensitive regard for the unique needs of individuals and one is the general duty of care based on the contractual and institutional duties and rules. Care may give nurses the motivation to advocate for their patients by treating patients with respect and dignity.15 Care can also be an expression of the nurses' unselfish interest in the welfare of others.16,17 By nurses taking on the role of patient advocate, advocacy becomes an expression of caring.17,18 However, caring also includes ensuring advocacy does not lead to over-involvement where the patient's interests compete with those of the nurse.18 In addition, there is a thin line between advocacy and paternalism in particular when patients, such as infants, cannot talk.19 It is recommended that a holistic approach be taken to clarify the family's wishes, desires and needs in order to effectively advocate for infants, thus clarifying this thin line.19
The practice environment has produced some useful examples to help clarify the meaning of care and caring. There are four elements of care: attentiveness, responsibility, competence and responsiveness.20 Each provides a focus for ethical clinical practice. For example, recognition of the needs of a patient who appears to be in distress, it could be said that it is morally unjustified to ignore this need. Nurses are responsible to care for patients assigned to them for their shift, it is also the administrators' responsibility to ensure there are adequate number of nurses to provide care for their assigned patients. Experienced critical care nurses achieve clinical competence to enable them to provide expert care for critical patients and their families.21 The moral precept of responsiveness requires that we remain alert to the possibilities for abuse that arise with vulnerability, neonates and infants would be an example here. Nurses tend to use a caring approach for patients with critical conditions, those with multiple psychosocial problems, those who rely on the nurse and those who are attentive and likeable.22 In contrast, caring was limited in transient conditions, such as when a patient's or family's behaviour causes problems, a patient's unwillingness to talk and a patient's poor self-image. These self-imposed limits on caring can influence how nurses act as advocates.
Care as a moral ideal is the basis of various theories of caring10,14 and serves to protect patients' dignity, thereby meeting the patients' needs and rights of privacy. Acts involving the moral ideal of caring occur when nurses intercede to protect the patient's dignity. For example, neonates are vulnerable as they are unable to express their wishes for respect. Visitors to the nursery often find the small, premature infants a curiosity to observe. By caring about the infant's dignity, nurses show respect by shielding the infant from view. Thus, the moral ideal of caring becomes an essential component of a model of advocacy.
The ethic of care is contextual. That is to say, nurses concentrate on the individual and the particular relationships concerning that person within the context of each particular medical case where ethical dilemmas are embedded. By participating in ethical discussions, nurses can bring a unique perspective to those discussions, as it is they who are constantly involved with neonates and their families.
Attributes for Advocacy
The attributes necessary for patient advocacy are experience, knowledge and power.23 Through experience, nurses gain the knowledge that enables them to be more effective advocates within the health-care team and the organisation. When using the best interest standard as a focus for decisions, their experience and knowledge allow nurses to reflect on previous instances to support their actions as advocates. Experienced morally mature nurses are able to acknowledge their vulnerability and how this influences their subjectivity (emotion) that can lead to protective behaviours for their patients.24 Power to participate in and influence decision-making arises out of both experience and knowledge.
In a survey of neonatal nurses, effective communication skills, neonatal nursing knowledge and experience, empathy and respect for the family were identified as being important characteristics of a patient advocate.25 This supports previous studies that also identify knowledge and empathy together with assertiveness and communication skills as being important attributes for advocacy to occur.26 To gain these attributes, nurses need to be confident in their ability to understand the ethical dilemmas they face and to ensure they are aware of the underlying ethical principles to support their contribution to the discussions.
So what are the specific qualities required for neonatal and paediatric nurses to be advocates? There are many in addition to the experience, knowledge and power. Figure 1 lists those that are recommended for nurses to be advocates.
Issues for Neonatal and Paediatric Nurses
A caring nurse–patient relationship can be the catalyst for patient advocacy and interactions between nurses and the families that both express and define caring. When considering neonatal nursing, infants are developing beings whose potential is achieved over time. It is this potential that often motivates nurses to act as advocates in the hope that the infant will develop and live a quality life. Nurses use their previous nursing experiences to help them identify circumstances where they feel advocacy is desirable. For example, by protecting a small infant from multiple examinations enables the infant to self-regulate their behaviour, thereby avoiding physiological instability. Because the infant is part of the family unit, relationships can develop between nurses and the infants' families. These relationships have mutual expressions of caring as each strives to achieve what they see as the best interest for their patient and child.
If nurses are to be patient advocates, they need to have a broad understanding of their patients and their families. Nurses often know what is best for their patients from a clinical viewpoint, but their knowledge may not extend into the realm of their patients' values.3,27 However, when nurses have developed caring relationships with their patients and families, they can provide unique insights into the families' values. Nurses may be placed in situations where they are given information by the families and this in turn can provide them with confidence to speak up on their behalf. As advocates, the ethical responsibility of nurses is increased by decisions made by others:3 for example, when some treatment decisions are made and they may not be considered to be in the patients' best interests. As advocates, nurses need to speak out on behalf of the infants' best interests. By upholding the values and ideals of the family, advocates can contribute to the discussion that ultimately leads to an ethical decision being made. Therefore, when nurses are advocates, they benefit from being knowledgeable in ethics and values and by articulating their views concerning their patients.
On the other hand, patients who are silent and whose values are inaccessible to the nurse, such as newborns, are the crucial test for the advocacy role.5 The involvement of nurses can make a unique contribution to decision-making. This results from neonatal and paediatric nurses spending many hours caring for their patients and getting to know their responses and behaviours. However, nurses who are involved in humane acts of caring are often emotionally committed through the close relationships that develop with their small patients and families. Nurses have been described as ‘baby advocates’ and ‘surrogate mothers’ who often find themselves in serious disagreement about issues of non-treatment.28 For example, when caring for a dying infant who continues to receive assisted ventilation, nurses may advocate for withdrawal of life support. Anspach29 found that because of their close relationship to the neonates' responses, nurses often reached decisions prior to doctors and parents. These decisions arose out of the close relationships nurses have with their patients and the intuitive cues arising from such prolonged relationships. This can give rise to a dilemma when nurses may see themselves as knowing and yet are not exposed to all the information available to other health professionals. Thus, when nurses see themselves as advocates for neonates, they are prepared to speak up for them; this may mean speaking against some decisions made by others using different criteria. The nurses need to be supported in these situations so they can participate in discussions and contribute to their own learning for ethical decision-making.
Differences in the perceptions of advocacy by more experienced and specialised nurses were found in neonatal intensive care nurses. Elements of an ethic of good that incorporates the primacy of human relationships as central for nursing occurred in the themes of the nurses who saw themselves as patient advocates.6 Advocacy was patient centred and relates to two broad categories: first, attempts to alleviate discomfort and pain, and second, attempts to initiate or facilitate serious examination of whether continued life-prolonging treatment is an overall benefit for some infants. Although neonatal nurses did not see themselves as being involved in ethical decision-making, they viewed patient advocacy as a significant part of their role.25
Advocacy in neonatal and paediatric nursing comprise both acting in the best interests of the child and facilitation of child self-advocacy, thus supporting the differing ethical principles of autonomy and best interest.30 Representation of the parents and child's views are also central to the role of the neonatal and paediatric nurse.
Advocacy is seen as a fundamental part of the nurse's role. However, many nurses are not involved in discussions around ethical decision-making. How advocacy is perceived may influence the nurses' involvement. Caring can provide a model for nurses to use and articulate their contribution. Involving nurses in ethical discussions surrounding their patients is necessary to enable nurses to be patient and family advocates in a meaningful way.