The palliative care clinical nurse consultant: An essential link
Article Outline
- Summary
- Introduction
- Research methodology
- Findings
- Discussion
- Recommendations and conclusion
- References
- Copyright
Summary
This study describes the role of acute hospital palliative care nurse consultants and makes recommendations about future directions for the role development of this role. While the palliative care nurse consultant role is accepted in the acute setting there is little evidence or literature about what contributes to the success of this role. A three-phase study was undertaken to describe the role of palliative care nurse consultants in acute hospitals in Melbourne, Australia. The first phase of the three-phase study, involving in-depth qualitative interviews with the palliative care nurse consultants, is reported in this article. Using open-ended semi-structured questions, 10 palliative care nurse consultants were interviewed using open-ended questions about aspects of their role and the interviews were thematically analysed. Four main themes were identified that clarified the role; being the internal link; being the lynch pin; being responsive and being challenged. The palliative care nurse consultants were the first point of introduction to palliative care and thus they saw a significant role in introducing the concept of palliative care to those requiring palliative care, their families and others. They are an important link between the settings of care required by people accessing palliative care—acute, in-patient palliative care and community care. The palliative care nurse consultants saw themselves in leadership positions that in some ways defy boundaries, because of the inherent complexity and diversity of the role. The palliative care nurse consultants’ role appears to be pivotal in providing expert advice to staff and people requiring palliative care, and connecting palliative care services both within the hospital and to external services.
Keywords: Palliative care, Palliative care nurse consultant, Scope of practice, Nursing roles, Role clarification
Introduction
Death frequently occurs in acute hospitals and as a consequence there is a large emphasis on palliative care in this setting (White, 1998). In spite of this there is limited data describing the role of expert palliative care nurses working in clinical nurse consultant (CNC) roles. The literature describing the CNC role illustrates the diversity in this role, from the work undertaken, the setting of such roles and the academic requirements of the position (Woodward, Webb, & Prowse, 2005; Borbasi, 1999).
Nurse consultant roles in the United Kingdom were established during the 1990s, to respond to the changing needs within the National Health System (Woodward et al., 2005). Cotterall, Lynch, and Peters (2007) report that in the UK, it is estimated that 90% of people will require hospital care in the last year of life; thus the availability of palliative care in this setting is vital. A major component of this role is providing emotional support to both patients and their families (Skillbeck & Payne, 2003), with the perceived benefits of the role being their ability to manage pain and psychological symptoms as well as being an advocate for patients and families (Jack, Oldham, & Williams, 2003).
In Australia, the term ‘Clinical Nurse Consultant’ (in some States called Clinical Nurse Specialists) has traditionally designated a nurse of seniority, often holding in-charge status (Fitzgerald, Pearson, Walsh, Long, & Heinrich, 2003). This categorisation implied that the role is an experienced nurse, who provided broad clinical leadership and in addition, assumed tasks in quality improvement, facilitated care of the person, strategic planning for the ward or specialty area, and the conduct of research (Fitzgerald et al., 2003). For the purposes of this article a palliative care nurse consultant is defined as a senior nurse working in a consultancy role within a palliative care service. In Victoria, the clinical nurse consultant role is classified in the industrial award at a senior level of Grade 4B or 5 (Australian Nurses Federation, 2006). Blackford and Street (2001) have suggested that palliative care nurse consultants played a twofold role: as consultants within the inpatient environment and facilitating communication with other providers outside the hospital setting. White (1998) has described six common aspects of palliative care nurse consultants: being a resource to others; counselling; having specialist knowledge; involvement in discharge planning; and education and research roles.
Specific palliative care nurse consultant roles in acute settings were first established in Australia in the mid-1980s, and from the beginning, the service model that emerged was a consultant service to all units within the hospital, providing advice for symptom control, discharge planning, outpatient review and terminal care for inpatients, either in the hospital or at home (personal communication, 2006). The title was usually designated as a “nurse consultant”. While the position was regarded as a senior nursing position in the hospital, at that time within the nursing industrial awards there was no specific clinical position for palliative care nurse consultants (personal communication, 2006).
White (1998) purported that the success of the role was dependent on both the hospital (i.e. how the role was integrated) and the incumbent (in terms of their skill). The World Health Organisation (1990) suggested that palliative care services best function when they were working together with cancer services and not perceived to be in competition; thus the palliative care nurse consultant role was one that provided a linkage between all services. Yet in seeking clarification of the role, there was little evidence that palliative care nurse consultants defined the scope and practice of what they do; therefore making this research pertinent.
Palliative care nurse consultants have been employed at most Melbourne acute public (and some private) hospitals for a number of years and have been accepted as part of an integrated care model, yet there is little evidence or literature about what contributes to the success of this role. Anecdotal reports have indicated that the role had become pivotal to staff and people requiring palliative care. These reports identify the palliative care nurse consultants’ role in providing expert advice, connecting required services, liaising and advocating on behalf of patients and their families, both within the hospital and with other community-based services. The role appeared to be responsive to local needs, with little commonality regarding title, classification and scope of practice across institutions.
A three-phase research project was developed and supported by the palliative care nurse consultants through their special interest group and was actioned by the first author who was known to a number of members in a professional capacity (O’Connor, Peters, & Walsh, 2008). The palliative care nurse consultants expressed an interest in undertaking research that would highlight aspects of their role and provide data for the continuation and expansion of their role. The first phase, involving interviews is reported in this article.
The aims of phase one were to:
Research methodology
An explorative descriptive qualitative approach was implemented to undertake phase one of the study. This approach was selected to facilitate an in-depth exploration of the palliative care nurse consultant role. The palliative care nurse consultant special interest group served as a reference group for the project, in providing feedback, and linking between the researchers and each of the participating hospitals. University Ethics approval for the overall three-phase project was received along with approvals from relevant hospital ethics committees. The first phase involved in-depth qualitative interviews with palliative care nurse consultants.
The participants were initially recruited from within the palliative care nurse consultant special interest group; other interviewees were also sought through invitation from a member of this group. The inclusion criterion was simply that that nurse had to be working in a palliative care nurse consultant role. Information about the project was circulated to the group and interested palliative care nurse consultants contacted the chief investigator who arranged a suitable time and place for the interview. Formal written consent was obtained from participants prior to commencing the interview, which was audio-recorded and transcribed and conducted by the chief investigator in each palliative care nurse consultant’s place of work. Each interview took approximately 45
min and all interviews took 5 months to complete.
Interviews were analysed using thematic analysis. Thematic analysis was carried out using van Manen’s six step process (1990) and both authors reached agreement on the final themes through reading and re-reading the emergent themes and the structuring of information through continuous dialogue.
Findings
Ten nurses working in the palliative care nurse consultants role contacted the chief investigator to participate in the study, representing about two thirds of the membership of the special interest group. These nurses worked within different organisational structures; sole practitioner or as part of a purposefully structured multi-disciplinary team. Some were the only palliative care nurse in the hospital; others worked either alone or with nurses and other health professionals in a team. The length of experience of the nurse was the only demographic data collected—this varied from 12 months to 20 years, with the average length of experience being nine years. The data concerning aspects of the consultants’ role unfolded into four themes namely, being the internal link; being the lynch pin; being responsive and being challenged.
While the composition of the team influenced the themes that emerged, themes were not influenced by the hospital setting, or the individual’s experience.
Being the internal link
This broad theme described how the palliative care nurse consultants worked within their respective acute care settings and how the role impacted within that setting. These roles included: being an advocate and assessor for both people requiring care and staff; a liaison person between staff discipline groups and between staff, patients and their relatives; a counsellor for staff, and an educator and consultant for other nurses. Care of terminally ill people was central to all these aspects:
…I am called on to see patients and assess them and maybe it might be something as simple as…symptom management or look at how we can best care for them now they have been given a palliative diagnosis and of course comes discharge planning (Participant 2).
Many participants described their daily activities as ‘doing a circle’ – consulting with other staff, monitoring the ill person, supporting and counselling families – crossing traditional boundaries in liaison with other agencies:
…advising on symptom management.…the staff see a need either for increased symptom management or support for families or even just support for themselves; to say can you look at them and give us your opinion.…so I guess in many ways we are a backstop for the staff (Participant 6).
The palliative care nurse consultants considered that they were filling the gaps between the services with whom they needed to work. Often they were the first to introduce palliative care to those requiring care, and their families and were “breaking new ground” in facilitating end of life conversations, in particular, addressing the “tough stuff”. While modelling the expertise inherent in this role, especially pain and symptom management, the nurses also felt undervalued by their colleagues and frustrated by those who did not utilise their expertise, to the detriment of good care. They balanced the need to educate staff with the need to not take over the sick person’s care:
I think sometimes there is—it is almost a double edged sword. In some ways I think they (other nurses not specialising in palliative care) are just happy to hand the care over and not have to do it. And then we may go through a few things with them and teach them (Participant 1).
The participants commented on the broad scope of their role and how it was supported by all facets of the health care professions—social workers, medical consultants, nurses, medical registrars, physiotherapists and pharmacists. Much of the work with interdisciplinary team members was educational, with “…a range of expertise within all those disciplines” (Participant 10). Working with junior staff was an area where palliative care nurse consultants assisted them in learning to anticipate the needs a person might have:
…it’s a matter of educating them, but yeah, acknowledging that we work in a large teaching hospital and that you are working with interns who are just out of their training (Participant 10).
The palliative care nurse consultants described their role as multidimensional and complex, varying from day to day and unpredictable as each day unfolded and “as much as the unpredictability can be exhausting, that’s what makes it interesting” (Participant 10). A key strategy in promoting their role was the ability to be flexible and not to become overwhelmed by the diversity of functions and relationships they had to negotiate.
Being the lynch pin
An important area of work for these participants was their consultative role. Many participants spoke of their relationships in the community and described themselves as being pivotal in giving advice regarding palliative care: “…as a lynch pin liaison between community-based palliative care and nursing services in the hospital.” (Participant 3). They described being the main contact point for community agencies, requiring a “flow of information” from the community to the hospital (Participant 3).
Being clear about their role and function was important to the palliative care nurse consultants because without clarity they could not be an asset to the community services. While terminally ill people died in hospital they may also purposefully choose to leave hospital to die in the community. The seamless care expounded as necessary for continuity within and without hospital walls was seen as vital.
Many participants valued the multiple and varied outside functions they assumed as part of their daily work. At times some palliative care nurse consultants found they served many ‘masters’ but most suggested they were experienced enough to be mindful of all the responsibilities they assumed:
I think it requires good communication skills…a good understanding of family dynamics…I’ve also worked in the community as well so I guess I’ve got an understanding of what it’s like for people trying to care for patients at home too. (Participant 10).
Discharge planning was described as being poorly achieved, participants surmising that it was not well prepared, developed or implemented. They described “a lot of pressure with discharge to get people out and complex discharge planning is very poorly known” (Participant 7). They saw their role in taking the lead in some circumstances with one participant suggesting discharge planning “as very much my forte to lead the team in medical, allied health and nursing staff” (Participant 7).
The participants relayed they were ‘on-call’ both within and outside the organisation and were frequently asked to see terminally ill people and assess them for their suitability to receive palliative care services. They made decisions about the individual’s need to be admitted either to hospital or to community palliative care:
We are also available to liaise with patients who have come into the Accident and Emergency Department. Sometimes we get referrals from the Intensive Care Units or the Coronary Care units. So basically anywhere throughout the hospital or the outpatient clinics, we get called to see patients. As best we can try and get some of the main referring units. We go to their once weekly team meetings as well (Participant 10).
The palliative care nurse consultants believed they functioned as consultants both in a hospital and outside, work centring on the ill person’s need. They reported their work within the hospital was as important as their profile within the community and they worked hard at realising both.
Being responsive
The participants described the need to work closely with the hospital community in which they were placed. Individual care was not seen as limited to ill people and their families, as many palliative care nurse consultants also discussed their care of nursing staff, medical colleagues and allied health professionals who were anxious about delivering palliative care:
the staff see a need either…support for themselves to say can you look at them and give us your opinion.…A lot of it is that the doctors more often will listen to us than they will to the staff on the ward.…So I guess in many ways we are the backstop for the staff. (Participant 6).
The length of time and nature of the work required to develop a responsive relationship with sick people and their families was noted as an often invisible part of the role. However, for many palliative care nurse consultants the rewards were reflected in the positive outcomes of their connections:
…it is not always recognised in the community what happens here. How much hard work actually happens within a hospital setting to get people prepared for even the concept of palliative care…talking to families that have had perhaps twenty/thirty year connections with some of the units (Participant 3).
Clinical expertise required being responsive in relation to management or commentary on treatment variations, family crisis management or providing insights into new care techniques. In addition palliative care nurse consultants were called upon to facilitate debriefing sessions for staff. As resource persons they were used extensively in situations where end of life care is not the ‘norm’ in particular ward situations. One participant described how she ‘walked a tightrope’ when contributing to staff knowledge:
I try and educate about how to go about symptom control.…I do go to a lot of trouble to get on with everybody so that I have a good working relationship and not seen as someone who just barrels in and orders everybody around (Participant 7).
Being with people at one of the hardest times of their existence was a common theme, but every participant remarked on the collegiate support their work permitted. This support had many facets: Participant 5 recalled how working in a large organisation facilitated her to seek confirmation of her professional decisions by consulting with her peers…“you’re not isolated…there’s always someone to bounce something off”. Facilitating peer support for debriefing was readily available for Participant 6 who worked as part of a team and noted:
I mean there are often times when we don’t have to say anything. Just the expression, or you know the cases that you are dealing with you just sort of say, “come on, you need a drink”. And you know go off the ward and do whatever just to wind down a bit before you go back and start again…And if it gets too difficult well you know that the other person on the team will go and do it for you (Participant 6).
The nature of the work meant that effective interaction was pivotal. A palliative care nurse consultant may have seen as many as 20 people (with or without their families) a day within the hospital. These may have been new referrals or readmissions and each required in-depth interviewing, necessitating the palliative care nurse consultants to have expertise in communication and a range of skills in speaking with vulnerable and distressed people. Providing advice and comment on appropriate care to staff also required the consultant to be well versed in diplomacy, negotiation and conflict management:
…it’s a consultative role, so we are asked for an opinion and its an all encompassing role of anywhere from symptom management to acute bereavement counselling to discharge planning to discussion of goals of care and coordinating care in the community (Participant 9).
The palliative care nurse consultants also organised family meetings with members of the team. Such meetings required timely facilitation of large groups of people who all sought their issues to be aired and clarified. In this situation the palliative care nurse consultants had to carefully balance the needs of each person vis-à-vis the needs of the ill person:
…a high proportion of families would have a sit down meeting that would involve usually the Registrar, O.T. Physio, Social worker, ourselves, the primary care nurse, patient and family. So you might sit down with ten people in the room to actually do that (Participant 5).
Most participants agreed that working with terminally ill people and families at the end of life was both a privilege and satisfying. Being able to assist people to come to terms with their own death or the death of a loved one was a major part of the role:
It brings out the best in people and the worst perhaps, but generally, you know, the best. It can be very inspiring. It can make me feel good if I can go in and help a family at such an intense time, be more okay about the crisis (Participant 3).
In some cases participants had a long-standing association with families, especially with those who had chronic long term disease processes such as cardiac disease, cystic fibrosis and some leukaemias. In these cases the consultant became involved in both acute and chronic phases of the illness as well as discharge and community care.
The participants spoke freely of the personal trust that terminally ill people and family members developed with them during the course of their communication. Information was confided to the palliative care nurse consultants from those for whom they cared, about their fears, their families, their perceptions about life and death. Family members also disclosed their innermost apprehensions about treatments, prognoses and emotional impact of their loved one’s illness or journey towards death. Often sworn to secrecy, the palliative care nurse consultants became intimately acquainted with furtive information. In the midst of much pain and suffering, the nurses were the “keepers of the stories” of the journey of terminally ill people and their families:
…(dealing with) what is the patient’s understanding; what is the family’s understanding; trying to work out where they want to be; whether they are comfortable at the moment; who can we speak to about (them); what’s their anticipation of what future care would be (Participant 5).
Participants noted that the role could be described as fluid and inspiring. They suggested that it was a unique role in that the palliative care nurse consultant appears to transgress traditional boundaries that nurses, especially those employed in hospitals, work within. Participant 6 remarked:
Well I can’t say our role is rigid. Every day is different. The way we handle every case is basically different so…you go along and as things come up you’ve got to deal with them as you see fit at the time. whatever you had planned can be so totally blown out the window by other things…often because you just don’t know what you are going to find.
Being challenged
While the work associated with the role could be exciting and different there were some challenges that stifled its development and rendered it difficult to professionally classify or fit neatly into the scope and practice of nurses. There were many differences between the participants, their titles, how they worked and their remuneration. Most described the role as “unfolding” and ‘evolving”, with a need to create the role as they live it out through their activities “… well it’s a complex role and it has changed over those six years now … I come into chaos and I give some order to the chaos” (Participant 2).
Some participants spoke of knowing intuitively the needs of the individual yet they were hampered by protocols that did not permit them access. This obstruction meant they had to wait until a crisis occurred before they would be contacted to give advice or refer to other health care professionals. The palliative care nurse consultants role transcended boundaries and in fulfilling a gamut of needs, their functions were not well understood or promoted. They were acutely aware of not stepping on the toes of others or offering advice that could seemingly be misinterpreted as interference.
…they’ve asked me to be involved and I would start off…very gently about what their understanding of what was going on and get them to tell me rather than me tell them how things are going for them. If I’m getting the wrong information, the information is incorrect we will restart and tease things out (Participant 5).
In attempts to define their role, the palliative care nurse consultants expressed a need for the common things they do well to be recognised, namely coordination of holistic care for the ill person and their families at any stage of the disease process, the provision of education; being a resource person for all staff involved in providing palliative care; and a support person for staff, the ill person and relatives as they work through some debilitating emotions.
For many, the implementation of their role required consolidated time. Time was an issue for others, as they felt impoverished of sufficient time to do what was required of them. The needs of people could be overpowering and the palliative care nurse consultants could feel overwhelmed with the burden of tasks at hand.
Administration activities formed a substantial part of the palliative care nurse consultant’s role. Participants mentioned their management activity in direct contrast to their clinical role and while recognising the value of keeping records, they often worked alone, responsible for managing their own paperwork and filing. These administrative duties imposed on clinical and education time and placed extra burden on an already restricted working time. Some participants spoke about truncated lunch times, working overtime to collate records and filing and coming in early or finishing late in order to keep pace. It was clear that administrative assistance for these palliative care nurse consultants was quite insufficient.
I think that if you’re constantly working overtime all the time that gets very draining as well. And I think you end up resenting the extra time that you do (Participant 10).
Many participants remarked on how their work locations were changing. For those in large teaching hospitals they reported on being called to give advice about palliative care in acute care areas and not just for people dying of cancer:
About thirty percent are not cancer consults. So that has led us out to the field of renal failure, cardiac failure, respiratory failure, stroke, which is a learning curve (Participant 4).
Those people normally classified as requiring aged care, also came under the remit of the palliative care nurse consultants. As the condition of an older person changed they could be admitted to the acute care area of the hospital from residential aged care and the palliative care nurse consultant was asked to provide a service for them and their families. In the main this service was to support the notion of an early discharge either to home or a residential aged care home.
Some palliative care nurse consultants described being burdened by their involvement with ill people and their families, which could be emotionally traumatic: Participant 8 purported:
…getting too overwhelmed with the busy-ness and the emotional side of it. Sometimes it gets hard, really hard if you are close to patients or if it’s too traumatic with situations happening all at once. Then it’s hard to keep the energy going (Participant 8).
Discussion
Like the descriptions of the palliative care nurse consultants found in the literature, the role was that of a senior health professional, with commensurate responsibilities and skills (White, 1998). The palliative care nurse consultants themselves valued and clearly articulated both professional and clinical expertise in their work, with their healthcare colleagues as well as with ill people and families. However, the significant range of involvements in the various aspects of their role required a mature balancing.
Each participant described their role as blurred and thus often misunderstood, by their health professional colleagues, in relation to their activities and responsibilities. There were role inconsistencies in all aspects of the position, from their classification to the tasks undertaken and the titles used. While these are significant difficulties, particularly in endeavouring to find consistency, the palliative care nurse consultants also highlighted the benefits of being flexible, locally responsive and able to operate both inside and outside the hospital base. Since one of the aims of the project was to describe the role, highlighting these commonalities and differences will assist in developing a more cohesive and visible palliative care nurse consultant role across many settings. A consistent approach to the role will bring the roles under the one Award classification and in some individual hospitals, achieving parity will require additional funding.
The study identified the people-centred nature of the role. A surprising finding was that many of the palliative care nurse consultants indicated that they are often the first person to discuss palliative care with the sick person and their family members. This was a substantial aspect of their work both in the number of times they found themselves introducing the concept of palliative care and the amount of time these encounters took. This aspect of the palliative care nurse consultant role was in contradiction to the commonly held belief that the general practitioner initiated discussions about palliative care.
The emotional labour of nurses has been well documented in the literature and evidenced in this study (Smith, 1992, Lawler, 1992). From the first meeting with the ill person and their family, it was the responsibility of the palliative care nurse consultant to ensure their needs were established, particularly in relation to discharge planning and home supports. These involved giving information about what was available and in ensuring referrals were made to appropriate services. The decreasing length of stay was noted by a number of participants and the subsequent stress created by the need to achieve a complex range of tasks in a short time. They firmly suggested that “good work takes time”.
Consistent with the literature (White, 1998), significant involvement in educational initiatives were highlighted by participants. This responsibility could be formal education programs or informally at the bedside, in consultation with individual clinicians about particular people. There was an overt need to work in a way that developed the expertise of others, rather than keeping the knowledge for themselves and this inclusivity was particularly pertinent when one considered the rapidly changing workforce.
In recent years palliative care has become an acceptable part of treatment for chronic illnesses such as respiratory complaints and chronic heart failure (Loftus, 2000). This role has assisted in the development of a palliative care profile within acute hospital settings, introducing palliative care into areas like intensive care, to people with chronic illnesses like cystic fibrosis and in aged care. These trends are significant in that it has challenged the traditional connections of palliative care to cancer care and demonstrated the value of palliative care across the acute care setting.
Recommendations and conclusion
This phase of the study has described the palliative care nurse consultant role as a leadership position in the acute setting that is inherently diverse and serves as an essential link between all settings of palliative care. The four themes that emerged from the data highlight the major aspects of the palliative care nurse consultant role and exposed the complexity of their day-to-day working life. This data will be utilised to inform the next phase of the study, to collect data about the various task-based aspects of the role.
These data will contribute to defining the role and scope of practice of the palliative care nurse consultant, developing educational requirements for the role and implementing formal programmes of support and supervision. The role of the palliative care nurse consultant has been described by participants and a profile of common features of this role has emerged. This ongoing project will contribute to developing a common position description and then to argue for common classification and titles.
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PII: S1322-7696(08)00046-2
doi:10.1016/j.colegn.2008.06.002
© 2008 Royal College of Nursing, Australia. Published by Elsevier Inc. All rights reserved.
