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Cardiorespiratory Nurses’ Perceptions of Palliative Care in Nonmalignant Disease: Data for the Development of Clinical Practice

	Abstract

Top Abstract Background Project Aims Method Results Discussion and Recommendations... Conclusions References

 
Nurses lack a comprehensive body of scientific knowledge to guide the palliative care of patients with nonmalignant conditions. Current knowledge and practice reveal that nurses in many instances are not well prepared to deal with death and dying. Focus groups were used in an exploratory study to examine the perceptions of palliative care among cardiorespiratory nurses (n = 35). Content analysis was used to reveal themes in the data. Four major themes were found: (1) searching for structure and meaning in the dying experience of patients with chronic disease, (2) lack of a treatment plan and a lack of planning and negotiation, (3) discomfort in dealing with death and dying, and (4) lack of awareness of palliative care philosophies and resources. The information derived from this sample of cardiorespiratory nurses represents a complex interplay between personal, professional, and organizational perspectives on the role of palliative care in cardiorespiratory disease. The results of the study suggest a need for nurses to be equipped on both an intellectual and a practical level about the concept of palliative care in nonmalignant disease.

Palliative care strategies can not only provide assistance with control of signs and symptoms at the end of life but also facilitate communication with dying patients and patients’ families.³ Palliative care givers, as defined by the World Health Organization, do the following^4,5:

• affirm life and regard dying as a normal process,
  
• neither hasten nor postpone death,
  
• provide relief from pain and other distressing symptoms,
  
• integrate the psychological and spiritual aspects of care,
  
• offer a support system to help patients live as actively as possible up to death, and
  
• offer a support system to help patients’ families cope during the patients’ illness and the families’ own bereavement.
  

Palliative care services can also provide information and support for healthcare professionals. Many nurses may suggest that these goals do not differ from the goals in other domains of nursing practice. However, adopting the focus and goals of palliative care could help avoid conflicts associated with providing end-of-life care in acute care settings. In these settings, models of care are often based on the premises of acute, episodic management and a curative, treatment focus. Incorporation of a palliative care agenda into the planning and delivery of nursing care could improve the quality of life and death for patients in a wide range of practice settings.

	Background

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Increasing specialization means that nursing knowledge is often compartmentalized, a situation that sometimes threatens the diffusion of key concepts, such as palliative care principles, across practice domains. Prognoses in many nonmalignant cardiorespiratory conditions are worse than the prognoses in many cancers; however, patients with nonmalignant conditions are often denied the benefits and expertise of palliative care.² Developments in both pharmacological and nonpharmacological treatments for chronic diseases have resulted in increased longevity. Patients with congestive heart failure, a syndrome of pathophysiological processes caused by an inadequate cardiac output, are an example of the challenge of managing patients with chronic disease. Patients with this syndrome have a high risk of death, with 5-year mortality rates of 50%, decreased quality of life, and burdensome signs and symptoms that most likely persist until death.^6–9

Integration of a palliative care philosophy into acute care nursing environments can bring challenges. Many of these challenges are related to reconciling expectations and prognoses with clinicians, patients, and patients’ families. In an assessment of palliative care needs in a tertiary care hospital by Kincade and Powers,¹⁰ more than 50% of registered nurses surveyed described having insufficient skills in caring for terminally ill patients. Kirchhoff and coinvestigators^11,12 have reported the experience and perceptions of critical care nurses in end-of-life care. In these studies, tensions related to physicians’ behaviors and expectations of patients’ family members about the prognosis affected the care of dying patients. These researchers suggest that modifications to physical environment, education about end-of-life care, staff support, and better communication would improve care of dying patients and patients’ families in critical care areas.^11,12 In many end-of-life situations, a nurse is often the person sought out to filter, interpret, and advocate for a patient during clinical decision making. Similar concerns have been reported by oncology nurses, and these concerns reflect the complexity of ethical dilemmas in dealing with dying patients.¹³

	Project Aims

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The increasing burden of chronic disease prompted cardiorespiratory nurses at St. George Hospital, Sydney, Australia, to review the procedures and environment of end-of-life care. A collaborative project between acute and palliative care nurse clinicians was undertaken to

• gain insight into the perceptions of palliative care among acute care nurses,
  
• ascertain potential knowledge deficits and educational needs,
  
• determine and explore ethical dilemmas,
  
• identify existing barriers to the delivery of palliative care, and
  
• document resource and equipment needs for the appropriate provision of palliative care.
  

An examination of individual opinions within the context of clinical practice was considered useful.¹⁴ Therefore, as part of this collaborative project, focus groups were conducted in clinical settings to explore cardiorespiratory nurses’ knowledge and perceptions of palliative care. These findings were used to develop policies for end-of-life care for patients with cardiorespiratory disease.

	Method

Top Abstract Background Project Aims Method Results Discussion and Recommendations... Conclusions References

 
A convenience sample of nurses working in coronary care, medical cardiology, and respiratory units was invited to attend focus groups. Focus groups were chosen as the method because they provide information on the rich oral culture of nurses and are suited to the exploratory, contextual nature of a study such as this one.¹⁵ Group interaction is also useful in providing insights that would be less accessible without the communication and psychodynamics facilitated by a group situation. Ethics approval for the study was obtained from the South East Health Ethics Committee (Southern Section). A total of 35 nurses (30% of full-time staff) participated in the focus groups in June and July 1999. The level of participants’ experience ranged from several months to 25 years. Focus groups were conducted until no new information was gathered. Each group session was audiotaped, and the tapes were transcribed verbatim. Six focus groups were conducted, yielding 10 hours of transcribed data. To conserve the dynamics of the group during analysis, the moderator and members of the research team took field notes and made observations during the group sessions. Qualitative data analysis was used to determine recurrent patterns and themes.

Focus Groups
The socially defined knowledge and experience of nurses was explored to determine the collective perception of palliative care in cardiorespiratory disease. Social knowledge is a feature of culture; other features are attitudes, values, and behavior. According to Roberts and Snowball,¹⁴ nursing practice is strongly influenced by group dynamics. The exploration of attitudes collectively, rather than individually, is useful in examining the social, organizational, and environmental contexts of nursing practice. Focus groups are a form of group interview used widely in social science research.^14–21 Although the advantages and disadvantages are widely debated, we used focus groups to collect data because language is the primary means by which social knowledge is encoded.²² Focus groups also stimulate interaction and discourse between participants and with the researcher(s). An important difference between focus groups and most other forms of data collection is the presence of others in the discussion. Willingness to share and disclose experiences is crucial. A nonthreatening environment conducive to expression of opinions is mandatory. In our focus groups, the moderator was a participant researcher who had an existing relationship with the other participants as a cardiology clinical nurse consultant. We expected that the preexisting relationship would facilitate rapport and meaningful discussion. A complementary strategy of having some participants make written observations was implemented in order to record and describe nonverbal behavior and group dynamics. Participant observers were members of the research team and were conversant with the project’s objectives.

Data Analysis
Analysis of data collected via focus groups remains contentious because of the lack of standardized guidelines.²³ During our analysis, particular consideration was given to the participants’ interactions within the focus group and their behaviors within the clinical contexts described. Data collection and analysis were done concurrently as reflexive activities, and the research team met regularly to review data, assess data for themes, and discuss interactions within the focus groups.^{14,18,20,21,24,25} Four broad analytic themes were identified and deconstructed into subthemes. These themes and subthemes were subsequently verified by the observations of the participant observers. Consistency of coding and categories was determined by agreement between participant observers and investigators.

	Results

Top Abstract Background Project Aims Method Results Discussion and Recommendations... Conclusions References

 
Frustration surrounding end-of-life care was evident. Several of the new graduate nurses thought that palliative care was available only for patients with malignant disease. Participants embraced the interactive process and were eager to discuss their opinions and report their observations. Participants agreed that care of dying patients with cardiorespiratory disease is an important issue in contemporary clinical practice and that the increasing burden of chronic disease mandates deliberation of these issues.

Opinions and knowledge about palliative care varied between participants and were commensurate with the participants’ level of experience and exposure to palliative care. Most participants stated that they were unsure of how palliative care practice and philosophy fit in with acute care practice. Data saturation was achieved, and overwhelming themes and subthemes were ascertained (see Table). The 4 major themes were as follows:

1. searching for structure and meaning in the dying experience of patients with chronic disease,
   
2. lack of a treatment plan and of planning and negotiation,
   
3. discomfort in dealing with death and dying, and
   
4. lack of awareness of palliative care philosophies and resources.
   

Dilemmas in dealing with patients dying of end-stage cardiorespiratory disease were revealed. One nurse described the distress of having a patient die of end-stage respiratory disease; the patient struggled with the continuous positive airway pressure (CPAP) mask strapped to the patient’s face, with the patient’s family there watching: "We couldn’t make the resident understand the futility, I mean if ICU wouldn’t take him, well..." In contrast, 2 nurses recalled a patient’s dying and the rapid mobilization of palliative care services: "I couldn’t believe it all happened so quickly, I mean to take home an intubated patient, it was amazing, and there was a sense of feeling the patient, although dying, was calling the shots." While telling this story, the nurse was clearly emotional, and we could perceive a sense of satisfaction that the move home could be achieved for the patient.

Most of the nurses who participated in the focus groups thought that they had the skills to deliver palliative care, although some reported that they did not feel comfortable dealing with end-of-life issues. Comments indicated the existence of a zone of ambiguity in treatment directions and plans. One nurse commented, "All we need is the green light." It appeared that once the decision was made for palliative treatment, nurses felt considerably more comfortable in care delivery. Nurses also discussed difficulties in determining prognosis, and analysis of the data indicated that this problem was a barrier for implementation of a definitive palliative care strategy.

A difference in attitudes between nurses and junior medical staff, particularly after hours, was detected. The nurses in the focus groups recognized that calling the medical consultant often made the difference between continuation of futile treatments and the initiation of a palliative strategy. One nurse said, "We need decisions not to be made by interns but by the consultant team [attending staff]." The reality of clinical practice within a biomedical model is that after hours, without a definitive palliative care orientation of the treatment plan, the medical staff is compelled to take an aggressive, curative approach. The variability and subjectivity of medical practitioners’ attitudes were also described: "Dr ..., you know he does not believe in critical [do not resuscitate] orders. I’ve even heard it said that CPR is a rite of passage." Dialogue revealed that because decisions about end-of-life care were often left to a moment of crisis, access to senior clinicians and those with expertise in end-of-life care was often not possible. The participants considered that a clinical emergency is not the time to initiate discussions about resuscitation orders.

Balancing the demands and goals of treatment was reflected in the dialogue. Revealing her frustration with the delivery of futile treatments and confusion about the goals of treatment, one nurse asserted, "End stage should mean end stage no matter what the disease." A coronary care nurse specialist commented: "Recently, I had an admission to CCU with a CVA [for palliative care], nothing acute to do [technical procedures] ... it was refreshing, nothing to take me away from him." The nurses also described the impact of isolation and alienation, particularly when patients were placed into single rooms for peace and privacy: "Yes, walk in, flip them, and walk out; that’s what happens."

When asked about how nurses react to patients with do-not-resuscitate (DNR) orders, several participants reported discomfort in exploring this issue with patients and patients’ families. Overwhelmingly, nurses were confused and frustrated about what the DNR order means. One nurse said, "I mean, how far do you go? . . . One day I just begged the doctor not to resite the IV." This comment illustrates the nurse’s view that a DNR order meant that the patient should not have any invasive treatments. However, some participants considered that treatments such as CPAP and administration of inotropic agents were appropriate to use in the final days of life, if used to relieve signs and symptoms. This strategy was given the caveat that patients and their families must be given a realistic expectation of prognosis and treatment outcomes. One new graduate commented that she thought palliative care was just for pain management. This comment reveals a strong association between palliative care and malignant disease and a lack of familiarity with the value of palliative care skills in nonmalignant conditions.

Considerable discussion centered on what constitutes a "good death." The recent death of a young woman in the respiratory ward was discussed. This death was associated with a hemorrhage and hemoptysis. The woman was being supported by the palliative care team and refused analgesia, wanting to cling onto consciousness and be with her family to the end. This death was managed in accordance with the wishes of the woman and her family, but it was distressing to the nursing staff. Staff felt that they were powerless and had not managed the patient’s suffering; however, the patient chose this way to die. The participants noted that death is not always a peaceful phenomenon and that administration of narcotics and sedatives is not always desired by patients. This discussion revealed the complexity of palliative care and the need to establish the needs of individual patients. It also highlighted the stereotype of what constitutes a good death as well as the powerlessness and frustration that some nurses feel when dealing with dying patients.

A resource deficit was also noted by some nurses, who felt frustrated that the busy demands of acute care clinical areas prohibited sitting down and talking to patients. Access to specialized equipment and mattresses, even pillows, was commented on. Some nurses who had worked in specialized palliative care units commented on the effective use of aromatherapy and music in comfort care. The data indicated that the clinical practice environment and work practices of acute and critical care areas are not always conducive to delivery of effective and innovative palliative care.

	Discussion and Recommendations for Clinical Practice Development

Top Abstract Background Project Aims Method Results Discussion and Recommendations... Conclusions References

 
Generalizing findings from focus groups is often a matter of contention because the data are generally context specific, a condition that may limit extrapolation to other settings.²¹ However, the information we derived from this exploratory study has significant implications for clinical practice, especially with the increasing prevalence of chronic disease.²⁶ Existing guidelines must be refined and evaluated to determine prognosis and facilitate clinical decision making. Reconciliation of the perceived dichotomy between the philosophies of hospices and hospitals is required to deliver optimal care. Principles of palliative care must be integrated with models of care that have a curative biomedical focus.^27–30

In contemporary clinical environments, nurses are compelled to become more proficient in assessing the needs of patients and patients’ families with respect to treatment options and strategies. We also should encourage our patients and their families to plan for the inevitability of death and ensure that their current desires and wishes are known.^2,31 Nurses need to lobby on a local, national, and international level to ensure that patients with nonmalignant disease have access to the necessary resources and expertise at this vulnerable time in patients’ lives. Initiatives such as clinical pathways and case conferences may facilitate the promotion of a palliative care approach to patients dying of chronic diseases in acute care areas.²⁶

Importance of Collegial Support
Our findings further highlight the need for nurses to support one another as they share this important life experience with patients and patients’ families. This support should occur on a formal level in terms of policy and professional education and on an informal level in the form of collegiality and opportunities to debrief and discuss. Our results indicate the need for integration of palliative care principles across all areas of the nursing curriculum, not just in oncology modules. Collaboration, education, and opportunities for skill enhancement and development must support these initiatives.

Implications of the Findings
Our findings reveal a complex interaction of personal, professional, and organizational factors, revealing a need for nurses to be supported on an intellectual and a practical level to care for patients dying of non-malignant disease in acute care settings. Focus group findings also indicate that not only nurses, but their medical colleagues as well, require more education about the practice of palliative care.^12,31 According to published data,^10–13 key issues related to palliative care include the following:

• communication;
  
• reconciling expectations of patients, patients’ families, and healthcare professionals;
  
• managing signs and symptoms;
  
• professional preparation;
  
• prognostication; and
  
• the increasing number of patients with chronic disease.
  

The themes generated from the focus groups corroborate those reported by other investigators,^28,29 illustrating the challenges that caregivers confront in ensuring that the needs of dying patients and patients’ families are being addressed.

Refining Management of Signs and Symptoms
Contemporary palliative care has its foundations in oncology, arising from the need to address better management of signs and symptoms and holistic care. Similarly, the increasing number of patients with chronic disease necessitates changes in models and dimensions of care to meet the needs of patients dying of cardiorespiratory conditions. In our study, focus group participants willingly identified the factors that facilitate and obstruct implementation of optimal end-of-life care. Dying patients can be managed in acute care settings with the support of a specialized team to deal with the complex and difficult issues related to palliative care.^2,31 A cooperative, collaborative approach is necessary within the healthcare team to optimize nursing care of patients with end-stage cardiorespiratory disease. The incorporation of a palliative care philosophy into acute care nursing can bring with it certain dilemmas, such as prognostication, but it also has the potential to develop and enrich nursing practice. Our findings have implications for curriculum development and formal and informal education of nurses. In a tertiary care setting, two thirds of nurses indicated that they were the person most likely to initiate an end-of life discussion with a patient, despite self-confessed knowledge deficits in the sphere of advance directives.³² Dracup and Bryan-Brown³³ observed that medical and nursing programs do not often adequately prepare health professionals to address difficult ethical questions pertaining to death and dying.

Initiatives to Improve End-of-Life Care
Internationally, important initiatives exist to improve end-of-life care.³⁴ For example, St. Christopher’s Hospice of King’s College in London is a model program in palliative care.³⁵ On a policy level, organizations such as the British Medical Association and New South Wales Department of Health in Australia have issued guidelines on withholding and withdrawing medical treatment.^36,37 In Canada, the University of Toronto has an innovative program to train 10 000 physicians on issues associated with death and dying and to help develop policy agendas.³⁸

In the United States, several key initiatives and organizations exist to improve the experience of dying. These include activities of the Americans to Improve Care of the Dying and the Robert Wood Johnson Foundation’s Last Acts initiative.^39,40 The End-of-Life Nursing Education Consortium project, funded by the Robert Wood Johnson Foundation, is a collaborative education program to improve end-of-life care by nurses. The consortium is a partnership of the American Association of Colleges of Nursing and the Los Angeles–based City of Hope National Medical Center. The goals of the program are to develop a core of expert nursing educators and to coordinate national efforts to improve nursing education related to end-of-life care.⁴¹

	Conclusions

Top Abstract Background Project Aims Method Results Discussion and Recommendations... Conclusions References

 
The increasing number of patients with chronic disease mandates end-of-life care as an issue in curriculum and clinical practice development for all health professionals. Nurses are obliged to pursue this agenda in community, acute, and critical care settings to improve care for patients with end-stage nonmalignant disease and patients’ families. Nurses have the energy, commitment, and enthusiasm needed, as illustrated by the initiatives just described. The challenge remains to develop and evaluate novel models of care and policy environments that integrate palliative care principles into management of patients with chronic disease to improve end-of-life care for the patients and their families.

	ACKNOWLEDGMENTS

 
We acknowledge the contributions from and support of this project by the cardiorespiratory nurses and nurse managers at St. George Hospital.

Reprint requests: The InnoVision Group, 101 Columbia, Aliso Viejo, CA 92656. Phone, (800) 899-1712 or (949) 362-2050 (ext 515); fax, (949) 362-2049; e-mail, reprints{at}aacn.org.

	REFERENCES

Top Abstract Background Project Aims Method Results Discussion and Recommendations... Conclusions References

 

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This Article Abstract Full Text (PDF) Respond to This Article Alert me when this article is cited Alert me when eLetters are posted Alert me if a correction is posted Services Email this article to a friend Similar articles in this journal Similar articles in PubMed Alert me to new issues of the journal Download to citation manager Take the CE Test Citing Articles Citing Articles via HighWire Citing Articles via Google Scholar Google Scholar Articles by Davidson, P. Articles by Dracup, K. Search for Related Content PubMed PubMed Citation Articles by Davidson, P. Articles by Dracup, K.