Advocacy at end-of-life

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International Journal of Nursing Studies 44 (2007) 1343–1353 www.elsevier.com/locate/ijnurstu

Advocacy at end-of-life Research design: An ethnographic study of an ICU Roslyn Sorensen, Rick Iedema Centre for Health Services Management, Faculty of Nursing, Midwifery & Health, University of Technology, 11A The Terraces, Broadway, Sydney, NSW 2006, Australia Received 6 December 2005; received in revised form 8 June 2006; accepted 24 July 2006

Abstract 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. r 2006 Elsevier Ltd. All rights reserved. Keywords: End-of-life care; Intensive care; Nursing; Advocacy; Organization of care

What is already known about the topic?

 Nursing and medical intensive care expertise, multiCorresponding author. Tel.: +61 2 9514 9838;

fax: +61 2 9514 9846. E-mail address: [email protected] (R. Sorensen). 0020-7489/$ - see front matter r 2006 Elsevier Ltd. All rights reserved. doi:10.1016/j.ijnurstu.2006.07.019

disciplinary collaboration and patient involvement are important elements of quality in end-of-life care, including in end-of-life decision making.

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 Organizational, 

professional and individual practitioner barriers can impede the extent to which these elements become part of routine end-of-life care planning. Professional advocacy is promoted as a means through which nurses can realize professional goals and empower individual practitioners and patients.

What this paper adds This paper demonstrates that nurses can enhance patient care at end-of-life by addressing the barriers to patient advocacy by:

 Framing clear criteria within which nurses can assess 

and articulate the capacity of patients to withstand continuing treatment. Enhancing nurses’ specialized palliative skills to actively manage the non-medical needs of dying people, and negotiating workplace relations to include an enhanced nursing role in end-of-life decision making by extending nurses’ organizational and political skills.

1. Introduction Defining nursing advocacy has been a professional goal since its inclusion in international nursing codes of practice in 1973 (Vaartio and Leino-Kilpi, 2005; Snowball, 1995). For the purposes of this paper, we define advocacy as the explicit actions taken by nurses to represent the wishes of individual patients and patient populations in matters relating to their dying and death in health care institutions (Gillon, 1986). Formalizing advocacy as a professional responsibility in this way places nursing beside law and medicine as the only other discipline that formally incorporates professional advocacy roles (Grace, 2001). While useful models, neither of these antecedents sufficiently reflects the experience of nursing in pursuing advocacy as a practical means of achieving both individual and community health and well-being. In developing its advocacy role, nursing has, not surprisingly, run up against formidable obstacles where it conflicts with the interests of other professions, particularly medicine (Grace, 2001). Within these constraints, nursing seeks to define its patient advocacy role, and in doing so, accepts, to varying degrees, the political imperative of advocating for the place of the profession itself in a rapidly changing health care environment in which status and power relationships between the health giving professions are being realigned (Wicks, 1999). This research paper reports the findings of an ethnographic study that explored the potential for a nursing advocacy role within the context of a specific

regime of nursing practice, in this case end-of-life care. In doing so, we sought to examine the concept of nursing advocacy, 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. Our paper is structured in the following way. We review selected medical and nursing literature on patient advocacy to elicit major themes relevant to the concept. We then outline our research method. Next, we present and describe excerpts of dialogue from a study in a large intensive care unit as exemplars of advocacy, and interpret their significance in the context of an evolving nursing advocacy role. Lastly, we discuss the implications of our analysis for practice and draw conclusions about advocacy for people who die in intensive care units.

2. Background 2.1. The concept of nursing advocacy In defining nursing advocacy, three concepts recur in the literature. Firstly, through advocacy, nurses seek to protect patients against unwanted medical intervention (Snowball, 1995). Secondly, nurses seek to release patients from the discomfort of unnecessary treatment, so that they can die in peace (Vaartio and Leino-Kilpi, 2005). Thirdly, nurses seek to empower patients by making them aware of their rights, so as to weigh options and make informed decisions about their care (Vaartio and Leino-Kilpi, 2005). Common to all these concepts is the assumption that patients are prevented from experiencing a good death, as defined by nurses, because of persistent intervention from a forceful and dominant medical profession that is often unable to appreciate the importance of nursing knowledge and insight, and that nurses can and should assist patients to counterbalance. Notwithstanding a developing literature on nursing advocacy (Vaartio and Leino-Kilpi, 2005), the concept remains ill defined, ambiguous, contested and illusive (Breeding and Turner, 2002). The reasons for this are varied. In the case of individual good health and wellbeing that have societal roots, such as public health initiatives, nurses must align with other health professions with similar interests to achieve their ends (Grace, 2001) that may dilute nursing interests. In clinical settings where resources are constrained, nurses’ attention to any one patient necessarily limits their capacity to attend to the needs of others under their care (SundinHuard and Fahy, 1999) that can also dilute advocacy’s intended effect. More difficult to address is the environment of immediacy of action characteristic of acute health care that reduces the opportunity for nurses to meet the less-urgent, non-medical needs of patients

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(Tummers et al., 2001). Most difficult, perhaps, is the capacity for nurses to effectively advocate in environments that are unreceptive to nursing values (Grace, 2001). Included here is a defensive medico-legal climate that privileges intervention and impedes an advocacy role conceptualized as protection from such intervention. The assumptions that underlie these limitations, that nurses are passive ciphers who obediently carry out doctors’ orders, are being challenged as nurses link their professional responsibilities for patients and their organizational accountability for health outcomes to obstacles that prevent their realization (Grace, 2001). In many ways, the drive to formalize an advocacy role to support patient decision making about their preferred level of treatment parallels the impetus to formalize a professional advocacy role to protect and promote professional values and interests (Grace, 2001). Thus, a developing political awareness in the profession is shifting advocacy beyond defense of patients’ rights and promotion of professional concerns to active removal of the barriers to their achievement (Vaartio and Leino-Kilpi, 2005). This is evident in the integration of reactive and proactive advocacy roles (Snowball, 1995), where re-action at the micro-patient level links to pro-action at the macro-organization level to confront structural impediments to the profession’s goals (Grace, 2001). Hence, advocacy legitimates political action within the organization as emancipatory ideals for the profession become enmeshed with emancipatory ideals for the patient. Here, releasing the patient from the unnecessary suffering of futile cures equates with releasing the profession from the unnecessary suffering of silently witnessing the suffering of others for whom they care. If nurses are to successfully advocate for their patients and their profession in this way, a number of preconditions will need to be met. Firstly, nurses will need to come together as a community of practice (Wenger, 1998) to define an agreed advocacy role, and to develop expertise in the profession in general and in specialist clinical areas in particular (Hewitt, 2002). Secondly, enacting this role will require its acceptance, not only by individual nurses and the nursing profession, but also by patients and their families and other health care professions that represent the organization of health care. In the case of medicine, nurses will need to transform their residual role dependent on medical decisions, to an essential role defined by nursing itself (Vaartio and Leino-Kilpi, 2005). In the case of patients and their families, nurses will need to reflect upon and challenge their own assumptions of power to avoid reproducing biased representations of patient interests that an advocacy role seeks to negate (Norrie, 1997). Hence, enacting advocacy as a professional responsibility is not simply a matter of protecting and

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empowering patients from the power of others, but also from the potential power of nurses (Benner et al., 1999). To flesh out these views on the centrality of nursing advocacy to emancipated forms of patient care in which socially unnecessary suffering is absent, we turn to an examination of how advocacy is presently practiced in a specific regime of care. 2.2. Advocacy at end-of-life Potentially, nursing knowledge can be instrumental in improving the quality of care at end-of-life, described as bleak and oppressive (Slomka, 1992), if nursing contributions help to achieve the type of peaceful death, conceptualized earlier, that nurses have experiential grounds for knowing is desired, at what time and by which patients. Contributing such knowledge will need to take account of heroic medical treatment reported in the literature as persistently dominant in determining the type of care provided (Parascandola et al., 2002). Persistent medical treatment at end-of-life is criticized as unsustainable, both in terms of cost and ethics (Pronvost and Angus, 2001). However, the expertise of nurses to assess the psychological and emotional capacity of patients to withstand continuing treatment is not formally included in patient treatment decisions. Such criticism potentially advances opportunities for nurses to, firstly, contribute their professional assessment of the patient’s capacity to sustain intervention; to, secondly, include families early in information giving about the patient’s condition and so avoid destructive conflicts about the withdrawal or withholding of treatment from unconscious patients (Azoulay et al., 2000); and, thirdly, to adopt models of care as defined above, capable of supporting those for whom continuing treatment is judged to be of unlikely benefit (Curtis et al., 2001). Such new models of care should incorporate the two main foci of nursing advocacy. Included here is the patient rights focus, that respects patients as people and as human beings with the right to participate in decisions about their care (Vaartio and Leino-Kilpi, 2005); and the existential focus, that differentiates the treatment of the body as object from the existence of the human patient as subject, that takes the patient’s psychological and emotional state into account when treatment decisions are being made (Bishop, 2003). In diverse workplaces, structuring multidisciplinary collaboration into routine clinical processes becomes essential to quality of care (Baggs et al., 1992). In doing so, nurses must join with other disciplines to negotiate differences in attitudes, values and practices that pertain to end-of-life care, to balance objective physiological signs of the patient’s capacity to benefit from treatment with subjective signs that denote their desire to discontinue it.

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2.3. Balancing subjectivity in end-of-life decision making Inevitably, decisions about withdrawal and withholding of treatment entail an element of subjectivity, especially in the absence of conclusive evidence of outcomes. Presently, such decisions appear to be based on only a portion of the information potentially available. Our findings suggest that it is this very subjectivity that offers nurses the opportunity to contribute non-medical assessments of the patient’s status to augment medical assessments and so present a more comprehensive picture of likely patient outcomes on which defensible decisions about continuation or termination of treatment can be based. Yet the absence of nursing practitioners’ operational autonomy and nursing managers’ organizational authority prevents the development and enactment of an effective advocacy role. In these circumstances, professional advocacy underpins nurses’ interests and claims for inclusion in end-of-care decision making and the organizational strategies through which they can be advanced. As our data analysis presented next shows, it appears that nurses’ opportunities are still unduly restricted in this regard.

3. Method We undertook a study using ethnographic methods to gauge the quality of interactions in relation to reported nursing practice in a large intensive care unit in an acute public tertiary hospital in Sydney, Australia, to enhance our understanding of how advocacy might be realized in the context of end-of-life care. This work was undertaken as part of a larger research study in which a number of key themes emerged, one of which was advocacy at end-of-life. Other themes include the teleoeffective limits of end-of-life care, structuring communication, emotional labour, team effectiveness and the organizational implications of accounting for quality in end-of-life care. We chose a unit that fulfilled the requirements of a critical case study site (Flyvbjerg, 2001), acknowledged in the field as progressive in intensive care practice and research, and likely to be representative of Australian ICUs in metropolitan teaching hospitals in general. Ethics approval was granted by the University and by the health organization in which the study was being conducted. The principal method of research was ethnographic; with observation of unit practice undertaken initially over a 2-week period then periodically over 2 years with visits several times a week. Clearly, in a study such as this, ethical issues arise concerning the privacy of patients and families, and of clinicians. Patients, their relatives and clinicians were informed of the study and invited to contribute, if they wished. Their participation was

conducted under the terms of ethics approval; however, while patient care was described by the researcher, no patients were interviewed. While all personnel in the Unit were invited to be part of the study, this turned out to be predominantly doctors and nurses. Nurses in our study were those most likely to raise problems associated with inclusion of a patient voice or patient preferences in decision making, and to discuss the quality of care that dying patients received. We augmented our ethnographic method with focus groups to obtain the views of the nurses in the unit, and with interviews with doctors. Our data for this study are drawn from four focus groups comprising a total of 29 nurses with varying levels of experience, including clinical educators, experienced, less experienced and trainee nurses, conducted between July 2000 and June 2002, and augmented, where relevant, by excerpts from interviews with medical clinicians in the unit conducted during these times. Proceedings were recorded and transcribed. A multidisciplinary team of researchers analysed the data, which included a policy analyst, a social scientist and a medical and nursing intensive care clinician. Grounded theory was used to analyse the data (Curtis et al., 2001; Glaser and Strauss, 1968). Informed by the literature, the data were evaluated using the constant comparative method to define and refine themes, domains and items as they emerged, so as to uncover convergent and divergent patterns of interaction. Of the themes that emerged, one was the capacity of nurses to play an advocacy role in end-of-life care, the subject of this paper. The participant sample and methods of data collection are set out in Table 1. The study’s strength is its comprehensive examination of the daily working of an intensive care unit that is representative of such units, and the elucidation and interpretation of the stresses and strains and enablers and barriers that impacted upon achieving optimum patient care. The limitations of the study concern the focus on a single unit, and the extent to which findings can be generalized. Our aim is to describe the context in which end-of-life care is delivered, as a means through which others can draw conclusions about their own environments and the extent to which our findings and interpretations can be applied.

4. Analysis and interpretation For our analysis of advocacy, we selected extracts from transcripts of focus group meetings with nurses and interviews with individual doctors and clinical managers that reflect and epitomize themes relevant to patient advocacy in intensive care nursing. Together, the themes that emerged from the literature and those of respondent focus groups and interviews guided our

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Table 1 Methods of data collection and participant sample Type of method

Description of participants

No of participants

No of sessions

Patient case studies Family conferences Interviews with medical managers

Patients within the intensive care unit Within the intensive care unit Divisional medical director Departmental medical director Intensive care consultants (staff specialists) Medical personnel (both senior and junior) Nursing unit manager Nurse educator Less experienced nurses (up to 2 years) Intermediate nurses (2–5 years) Experienced nurses (5–17 years) External to but servicing the unit External to but servicing the unit

13 15 1 1 7 11 2 2 12 8 9 2 1

13 6 3 2 7 3 2 2 1 1 1 1 1

84

43

Interviews with intensivists Ward rounds Interviews with nurses Focus groups with nurses

Interviews with palliative care specialists Interviews with chaplain Total

selection. The extracts chosen are representative of the main themes that emerged and exemplify the potential for advocacy, or barriers to its enactment. We embed these extracts within our interpretation of their meaning and the consequences they incur. In our analysis, we consider how nurses and doctors speak of ‘a good death’ as an ideal of practice in end-of-life care, and the limits to realizing the ideal.

4.1. The ideal of a peaceful death Nurses spoke easily and at length about their concept of an ideal death, and we take a compilation of their descriptions as the logical starting point for our study of nursing advocacy. Nurses described ‘a good death’ as a positive experience for all involved, with common and recurring features that include the patient knowing their prognosis, having been involved in discussions and decisions about their care, accepting and being prepared for the event, being comfortable and pain free, able to die in peace with ‘do not resuscitate’ orders enacted, and with their family members present. Nurses expressed their view of the nursing ideal in this way: I feel better when the patient dies in peace with their family there and without being jumped upon (by the medical staff for resuscitation) but obviously there are patients you can resuscitate and you don’t, but to me if the family are around and they’re comfortable that’s all you can do for them isn’t it (Experienced nurse (A) 5.06.2001). Clinical expertise and personal commitment of clinical and manager nurses were two elements identified in preparing clinical staff to assist patients and families to experience this peaceful death:

If you could pick what you wanted, it would be nursing unit managers and more experienced nurses that would go to grief and bereavement training sessions—things like that. But they’d have to have some exposure to IC (intensive care) based nursing before they could do that. So you’ve got to build on something. And then that specific commitment to making it the most positive dying experience (Experienced nurse (B) 4.04.2001). Specifically, the organization required of the treating team to achieve this comprehensive level of quality patient and family care would include: A pre-plan. We’ve done what we can. You know very quickly over a space of two months. We’ve done that; it hasn’t worked. And we’ve talked to the family all the way through so they’re very up to date about what our thoughts are, what’s going on, what the plan is if this doesn’t work. They get a chance to say goodbye as well as knowing what could have been done has been done (Experienced nurse (C) 5.03.2002). To foreshadow our later discussion about achieving the ideal expressed in this way, clinical caregivers will have to come together to form a consensus about the patient’s prognosis, with nurses contributing assessments of the patient’s psychological and emotional status together with medical assessments of the patient’s biological status; information about the patient’s changing prognosis will be disclosed to them as it emerges; patients will contribute freely to discussions and decisions about their treatment and care where they are able; and since the patient’s admission, the patient and their family will have been prepared for the possibility that their condition may deteriorate, with the patient’s preferences about the level of intervention

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discussed and documented, and the family involved and accepting of the patient’s wishes. Importantly, nurses will have specialist organizing and therapeutic skills for managing the care of dying people and their families described in this way. Doctors generally did not conceptualize death in such specific terms, but rather as concrete tasks relating to patient salvage (Iedema et al., 2005). Where a doctor did discuss the quality of a person’s dying, it was articulated in the following way: It would be nice if we could move them somewhere else. It would be nice if we could get them out of the busy, loud, shrieking food and coffee drinking sort of place to somewhere that’s much nicer—I think that would be really nice—where the relatives don’t have to ring the blasted door and go through the waiting room and you know, where they were really effectively allowed free access that was nice and quiet—there’s lots of room for all the family—there’d be somewhere where we could go and explain what was happening and all that. So they sort of got physically taken away. In some way that would be an acknowledgement I guess of the process as well. I think that would be nice. I think it would be nice to have some resource people for whom this was a real interest and that they could help with the nursing care of the patient—like my idea about nurse specialists, so that that’s their special area of expertise and they could consult or help write protocols or support the nurses or do some debriefing or something like that (Senior staff specialist and unit manager 11.04.2002). While acknowledging the physical limitations of the ward for people who are dying, the elements of a good death as described here occur after dying has been diagnosed. For this doctor, once a diagnosis of dying is made, the responsibility for the patient rests with nursing. Notably, the doctor accepts the care of dying people as a specialized therapeutic skill for those nurses interested in developing such expertise, that includes organizing care systems and supporting nurses in their emotional work. Commentators in the literature similarly advance such specialist management of end-of-life care, albeit to improve the communicating and organizing skills of both nurses and doctors (Curtis et al., 2001). Having regard to the ideal of a peaceful death, we next turn to a discussion of the practical limits to nurses designing and enacting such ideals of care as conceptualized here. 4.2. Limits to advocacy The limits to achieving the ideal identified by both medical and nursing respondents appeared to be not

only external to the nursing profession, but also internal. External limits included the economic imperative of conserving scarce resources, the primacy of medical authority to treat, and conflict between medical and nursing clinicians about patient management decisions. Limits internal to the profession included the lack of operational autonomy that would allow nurses to contribute their assessments of the non-medical status of the patient in terms of likely outcomes, and the lack of organizational authority to formally structure nursing knowledge and practice into patient care decisions. Each of these limits is discussed below. Firstly, in terms of economic limits, pressure on scarce resources was identified as a factor that constrained a patient’s access to beds in the unit, to clinician expertise and the duration of their stay. Both nurses and doctors shared an understanding of such limits, expressed by a nurse in this way: Here, (in the intensive care unit) there’s probably more priority (on making a decision to withdraw or withhold) because they (medical clinicians) know there is pressure to get the patient out of the bed, so they’re not going to hold on to them (Experienced nurse 5.06.2001). The factors that affected decisions about the extent of medical attention given and available and the length of time that patients spent in the unit appeared to be notional and arbitrary. In discussing the choice between ventilating two patients in the unit, a medical clinician made the decision to not continue treatment and not ventilate one of the patients based on: So it’s having a fair crack of the whip. She’s had a fair crack of the whip (Staff specialist 5.06.2001). In discussing the withdrawal of treatment for a different patient in the context of the difficulty a family was having in coming to terms with their relative’s impending death, a nursing clinician expressed the limits to care in more concrete terms: See, we should just make the decision and withdraw. If you give them that glimmer they’ll cling to it. You need to be firm, paint it black. I’ve been here too long—if you give 24 h, they’ll want more. They’ve already had 48 h (Experienced nurse 22.05.2001). Secondly, a range of non-economic factors was identified on which treatment decisions were based, as often to continue treatment as to terminate it. Here, medical authority is a factor in continuing curative intervention, irrespective of the financial implications. Instinct was brought forth as a not uncommon basis for decision making. The subjectivity involved in intensive care decision making is exemplified in this backhanded compliment of a nurse about a medical clinician that ‘He

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would resuscitate road kill’ (less experienced nurse 5.02.2002). This comment suggests that belief in one’s abilities and persistence are often prominent in decisions to continue treatment, and it attests to the indeterminacy of criteria in intensive care decision making. Hence, the use of scarce economic resources as a justification to limit treatment may be disingenuousness in some cases, because it may well be determined by yet other factors (such as the need for certainty, or the desire to impose one’s decisions on rival others). Nurses in our study preferred that treatment be withdrawn where the patient’s comfort was being jeopardized. The nurse speaking in the next excerpt seeks to focus on the ‘good aspects’ of decisions to withdraw treatment where it is perceived as ‘a form of torture’. Here, the view that medical clinicians are directed to save lives at any cost is set against the inference that nurses are powerless to intervene, even where they have misgivings as to treatment efficacy: The good aspect of I think medical decisions regarding the withdrawal of care is like the aspect of what we’re doing to them is a form of torture, at times, but how, well they’re directed towards saving lives at any cost—and I don’t mean financially, I mean any costs (Experienced nurse 30.05.2001). If this is the case, formally structuring nursing assessments into routine practice becomes desirable for the patient, the professions and the organization. Were this to occur, nurses would need to be explicit in making judgements about continuing or terminating treatment, and for those assessments to be accepted in the medicolegal context of patient care decision making. Nurses could no longer equivocate about taking the type of hard decisions with which medical clinicians are continually faced. They would be called upon to make judgements about the extent of a patient’s reserves and the possible consequence of treatment in terms of poor functional outcomes, that the nurse speaking below finds difficult, and be willing and able to defend their decisions in court. Nurses will need to find the courage and the authority to exercise autonomy by speaking to medical clinicians and the relatives about stopping the ‘torture’ that continuing treatment may lead to: I guess if I was the nurse at the bedside on a particular shift I would be looking at saying to them—look, you know, he’s been a trooper, he’s really tried so hard, I wonder how much more reserve he’s got. This is a pretty scary time. I don’t know that I’d be willing to go down the path of saying: ‘have you thought about what might happen if he can’t keep up this fight’ (Less experienced nurse 4.04.2001). Thirdly, a difference emerged in our study between the professions about appropriate patient management

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that often manifested as conflict. Both doctors and nurses experience distress caring for patients in intensive care, expressed during interviews and focus groups. For nurses, this distress related not only to their powerlessness to intervene on behalf of patients; it was also pronounced in nurses’ interaction with doctors. To be effective advocates, nurses will need to form constructive working relationship with medical clinicians, including negotiating rules about acceptable behaviour between professionals, particularly when contributing nursing assessments of the non-medical status of the patient. The incivility of some medical practitioners towards nurses and patients, the exclusion of nurses from discussions and decisions about patients in their care, and the denial to patients of knowledge about their changing condition, as tolerated forms of behaviour, was expressed by a unit nurse in this way: I found the doctors would talk at the end of the bed and just walk away. And I’m like—hullo, who are you talking about? The teams come in here—not necessarily the ICU doctors but the outside teams— will come in here and they’ll—oh ya ya at the end of the bed, write their notes and walk off. They don’t even talk to the patient. They don’t even touch the patient. How are they supposed to know what’s happening? (Less experienced nurse 5.02. 2002). Nurses reported also engaging in uncivil behaviour and withholding information as a punishment to doctors they perceived as overbearing. Thus, nurses will need to reflect upon their own attitudes if they are to avoid reproducing such fractured relationships with doctors that must inevitably affect the quality of patient care. The nurse speaking in the next excerpt describes an aggressive manner of not routinely volunteering information about the patient or assisting a medical clinician with a patient care consultation: They come into the bed area and I would never volunteer a piece of information to them. I don’t ask them if they want anything (Experienced nurse 5.03.2002). A fourth limit to nurses enacting an advocacy role has its origin more within the profession and the organization than in multidisciplinary conflict about values and practice. Notably, the necessary operational authority and structured opportunity for nurses to offer their autonomous assessments of the patient’s non-medical status is absent. This absence is evident in the two excerpts highlighted next. In the first excerpt, the strategy offered by a nursing manager to counteract medical clinicians’ overbearing behaviour by developing a team-based model to allow nurses to contribute their knowledge during ward rounds is unlikely to foster the

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type of social integration of knowledge and practice needed at ward level or the systems integration needed with the units that admit patients to ICU (Giddens, 1984): As an indictment against myself I made a vow that I would be out on the ward round more often and yet again it’s creeping back that I’m not. So somewhere along the line I’ve got to make myself not book anything in the early part of the morning and just be there on the round because one of the things that I see as my role is to develop a model for nurses at the round. To be more forthcoming, that the doctors won’t overstep the mark with me, sort of thing (Nursing unit manager 4.04.2001). Nurse managers, as nurses with positional power in the organization, have a key role in formulating, reinforcing and upholding expected standards of behaviour, of collaboration, and of practice. Upholding nursing values that privilege disclosing information to patients about their condition and their prognosis, that maintain patients’ engagement with decisions about their care in principle, and that support individual nurses when these values are breached in practice, is an essential advocacy role within the organization. The repercussions for nurses, and for patients, where personal and professional values are not upheld, arise in the next excerpt from a nursing manager. Here, the medical clinician’s collusion with the family to not disclose information to the patient evidences not only practice inconsistencies, but also the power that families have to dictate concealment of information that breaches patient rights and the therapeutic relationship established with the patient. The manager’s complacency in not addressing these breaches links the powerlessness of nurses to advocate for individual patient’s rights and values and the powerlessness of the profession to advocate for its own rights and values: She felt that the patient was not involved in the death. She looked after the patient y she was talking to the patient and explaining to him y she was talking to him about the options and the way treatment can go and he was very much adamant in her eyes that he wanted to be involved with what was going on with his treatment, which is reasonable. But in the end the intensivist took the wife and the daughter out of the unit, to the room, like we normally do without the patient, and it was discussed outsideythe wife didn’t want the husband told what the decisions were, yet the patient himself had been very much wanting to know and it caused this girl just enormous amounts of stress (Nursing Unit Manager 14.05.2002).

5. Discussion 5.1. Managing the limits to advocacy Economic imperatives, the primacy given to medical intervention and multidisciplinary conflict restricted opportunities for nursing clinicians to advocate for the rights of patients to be involved in decisions about their care, and for nursing managers to advocate for the rights for nurses to contribute nursing knowledge in this regard. For nurses to be effective patient advocates, they will need to find ways to challenge decisions based on established medical authority, those that rely on spurious economic grounds to limit treatment and those that support continuation of aggressive treatment that denies time for disclosure, discussion and support, through which patients and their families make the psychological transition from the hope of survival to the realization and acceptance of impending death (Iedema et al., 2005). While both doctors and nurses seek to improve the care of the dying, this appears to occur more in hypothetical terms, and as it relates to each profession’s perception of good patient outcomes, rather than being carried through into practice. In this study’s intensive care locale, rules are implicit about who speaks to whom, how decisions are made and who makes them. The quality of nurses’ interaction with doctors and patients, and their capacity to act as patient advocates was structured into perpetuating relations of power and domination. However, even though nurses repeatedly cited doctors’ attitudes as the main barrier to enacting a patient advocacy role, nurses themselves did not engage with each other to challenge unacceptable behaviour, to form alliances with like-minded clinicians or to devise and advocate alternative methods of interaction. Rather, nurses shied away from examining the values and actions of other nurses as responsible health care professionals, including the ways in which their perceived powerlessness is reproduced in their encounters with medical clinicians, and the potential that this has for poor patient outcomes. By its very nature, advocacy will trigger differences of opinion about patients’ best interests that challenge power relations between the professions. Such differences need to be resolved; where they are left unresolved, they could fester or erupt into conflict to the detriment of patients and the clinicians who treat them. The claim by some nurses that patient advocacy is non-confrontational, serves to highlight the view, pervasive in the literature, that nurses are reluctant to engage in conflict to defend their claims (Grace, 2001; Breeding and Turner, 2002; Melia, 2001). Nurses will need to negotiate and defend these changed and changing relationships, in the workplace, in the organization and in the profession, when claims for professional

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autonomy, on which advocacy is based, hit up against the interests of others. Hence, professional advocacy becomes the vehicle for patient advocacy, to advance the values of nursing and to protect those who engage in it. 5.2. Reconceptualizing advocacy Our analysis suggests that nurses and doctors experience difficulty knowing when and how to terminate futile treatment, just as families experience difficulty coming to terms with the dying and death of a loved one. An added difficulty for nurses is the continuing of treatment in the face of patient discomfort. What appears to be missing is a therapeutic engagement of the nurse with either the patient or their family as the underpinning of nursing advocacy. Neither the patient rights model nor the existential advocacy model sufficiently guides nurses in seeking to release the patient from the discomfort of unnecessary treatment and their families from witnessing it. For medical clinicians, withdrawing treatment is not a simple and easy task. Although the range of criteria on which medical treatment is terminated is becoming increasingly formalized and codified, decision making remains individual, medical and subjective (Pronvost and Angus, 2001). Yet it is in the very indeterminacy and subjectivity of end-of-life decision making that nursing knowledge about patient stamina justifiably augments medical knowledge of treatment benefit. When combined with medical assessments of biological need, nursing assessments of psychological, emotional and social need form a body of integrated knowledge on which decisions about end-of-life care can be more firmly based. This practical application of patient advocacy has implications for extending and deepening inter-professional values and practice. To achieve such ends, nurses will need to engage in the inevitable disagreements and negotiation with medicine and management to defend nursing claims of worth. Only through professional advocacy can collective agreement about workplacebased roles, responsibilities and practice, as the basis for effective patient advocacy, come about. Such a scenario calls for nurses to come together as groups of practitioners in specialized areas such as intensive care, to problematize the clinical and social contradictions that characterize intensive care nursing, to redefine therapeutic models of care for dying people, to restructure new policies and practices that span disciplinary and unit boundaries and to advocate for their embedding in care routines (Fairclough, 2005). Where nurses do contribute, their input can potentially help reduce practice variations associated with the subjectivity of medical decisions (Waddell et al., 1996), through systematic, codified and explicit input of information about patient preferences for care and professional assessments of patient capacity.

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5.3. A new approach to end-of-life care In developing their advocacy roles, nurses have an opportunity to extend their interpreter/mediator role between patients, families and medical clinicians (Heyland et al., 2002) and their therapeutic role to engage with the patient and their family to help create meaning in the transition from hope to disappointment to mourning. Our findings suggest that there is broad agreement between medical and nursing clinicians for nurses to formalize and enhance such roles. However, while these roles are broadly accepted in principle, they are not enacted in practice. Nursing knowledge currently is not structured into the ongoing routines of intensive care (Sorensen and Iedema, 2006) that would allow nurses to advocate in the way conceptualized here. Good clinician morale and good patient care presuppose new workplace standards that acknowledge and incorporate the worth of nursing knowledge, medical knowledge and patient knowledge. There is a need for, firstly, spanning disciplinary boundaries and articulating and negotiating integrated regimes of practice based on a common understanding of good patient outcomes, and, secondly, championing new multidisciplinary models of care that, collectively, consider and enunciate criteria that, early and iteratively, trigger multidisciplinary discussions about the possibility of futility, and on which decisions to withdraw or withhold can be taken. This new approach to end-of-life care is based on the precondition that nurses and doctors will come together to reflect upon and engineer the type of environment that supports an ideal death, as described earlier. To do so, nurses will need to communicate their ideas, not only to medicine and management about the value of a nursing contribution to patient care decisions, but also to other nurses. Nursing leaders in particular, and the profession in general, must engage with their health service organizations to increase therapeutic nursing resources and skills in the face of cost containment policies, in order to devise, and standardize, nonmedical regimens of care as complementary to medical regimens in intensive and end-of-life care, and to become politically and discursively adept at making visible the contradictions and disruptions to patient care that can arise from professional inequality.

6. Conclusion In this research paper, we consider patient and professional advocacy from an emancipatory perspective, defined as a means of removing socially unnecessary suffering through transformation of people and processes. We do this within the context of the change taking place in health organizations and in clinical

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workplaces. We hypothesis that nurses must reflect on their role in intensive care from the perspective of their accountability for patient outcomes if they are to satisfy professional, organsiational and ethical goals of care. Interpreted in this way, the profession’s unique knowledge about the patient repositions them as an essential partner in end-of-life decision making and not solely as a support to medicine. We further hypothesize that to do so nurses must formalize their assessments of the psychosocial and emotional status of the patient and their family and develop a specialized regime of care for those for whom treatment is deemed futile. It is this formal acknowledgement via its structural embedding within ongoing routines of care planning and decision making, we contend, that will underpin nursing’s fulfillment of their accountability obligations. Acceptance of a nursing advocacy role defined in this way will not be easy either within the profession or in the organization, and it will not arise spontaneously from medicine’s acknowledgement of nurses’ worth. Rather, it will take the collective and explicit actions of nurses based around specific regimes of care to achieve the types of change envisage and advocated for in this paper. We advance the view that the barriers to nursing advocacy do not lie solely in medical disregard for nursing knowledge, but also in the profession’s own attitudes and practices. That is, nurses’ relationships with each other, structured within relations of powerlessness and diffidence, impede opportunities to collectively problematize, restructure and advocate for patients and for the profession alike. The intensive care environments described in our paper and the relations of power within them are changing rapidly. Through reflection, structured around multidisciplinary reconceptualizations of good patient care and desirable outcomes that pertain to an idealized death, knowledge can be pooled in democratic processes constituted by professions and patients that allow the diffusion of power and responsibility to clinical caregivers apart from medicine, and including to patients themselves. In the case of end-of-life care, new sets of moral rules can be fashioned through dialogue and consensus around defensible workplace relations. These moral rules and changed regimes of care will emanate initially from nursing communities of practice, as nurses realize their new workplace power and rehearse and enact it in the form of collective fora that refashion routines and embed them in accepted and ongoing formal and informal practices. Included here is nursing’s early and formal input to decisions about continuing or terminating treatment, diagnosing dying, the reshaping of specialist palliative skills that come into play especially once such a diagnosis is made and the policy formulation that supports it. These new forms of practice will be gradually institutionalized in multidisciplinary communities of practice, as the basis for

routine team-based modes of care, as doctors, nurses and others constructively expand on nursing’s initial work through enhanced interpersonal negotiating skills. This presupposes that the profession itself will transform as re-skilled practitioners able to reconstruct clinical and organizational goals from emerging bodies of integrated specialized knowledge, in this case, in endof-life care. We contend that nurses can engage in the politics of emancipation to alter the rules of workplace interaction to include nurses’ voices in decisions that affect them and their patients through a reinforced and re-skilled professional power base, enhanced palliative expertise and a politicized and revitalized organizational effectiveness. In this, both internal and external influences can be brought to bear. Nurses’ internal emancipating actions through communities of practice will gain resonance when coupled with external forces that include a rapidly developing health reform agenda predicated on patient participation in decision making, improved service quality, evidence-based practice, teambased collaboration and accountability for patient and resource outcomes. Hence, professional advocacy in the organization parallels patient advocacy in the workplace. Combined within a multidisciplinary model of care, medical knowledge and nursing knowledge can together address the seemingly contradictory pressures inherent in patient advocacy at end-of-life.

Acknowledgements We thank Pieter Degeling, Ken Hillman, Elizabeth Turnbull and Arthas Flabouris for their contribution to the research and to Judith Donoghue for her comments on the manuscript. We also acknowledge and thank the Australian Research Council (SPIRT) grants and South West Sydney Area Health Service who funded this research.

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