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Abstract |
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• Objective To document the activities of home-based heart failure nurse specialists.
• Method A modified narrative analysis of clinical notes of home-based heart failure nurse specialists during a 12-month period was used.
• Results Data analysis revealed 7 key activities of home-based heart failure nurse specialists: (1) monitoring signs and symptoms and reinforcing patients’ self-management: identifying trends and appropriate action; (2) organization, liaison, and consultation with other health professionals to deal with changes in clinical status; (3) clarifying and reinforcing patients’ self-care strategies; (4) assisting patients in their desire to avoid institutionalized care; (5) identifying patients’ psychosocial issues: dealing with social isolation; (6) providing support: journeying with patients and patients’ families; and (7) helping patients and patients’ families deal with death and dying.
• Conclusions A major proportion of the activities of home-based heart failure nurse specialists are related to facilitating communication between health professionals and providing information and support to patients and patients’ families.
| Studies show nurse-directed interventions reduce hospital readmission rates for patients with heart failure.
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Nursing is a diverse profession, and care is delivered in many forms and contexts. The role of expert clinical nurses is pivotal to the delivery of complex biomedical care within a framework of caring and consideration of holistic needs.13 The nurses who fulfill this role are variously described as clinical nurse specialists, clinical nurse consultants, and nurse practitioners. Documentation and description of the nature of nursing work is often problematic because of the multifaceted and complex nature of the work.14 Clinical notes written at the moment of care provide a picture of the day-today caring relationship between expert nurses and their patients. Importantly, clinical notes document expert nurses’ perceptions of important events, activities, and major concerns of patients and the patients’ families.
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Method |
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In the study reported here, clinical notes taken during care episodes and interactions were entered into a Microsoft Access database as free text, together with clinical data in a relational database. Nursing interactions incorporated telephone follow-up as well as home visits. The free text was then exported into NUD*IST N5 software (QSR Applications, Doncaster, Australia) to facilitate data management. The data were used to answer the following research questions:
Setting
The study was conducted in a 580-bed community hospital in urban southern Sydney, Australia. Funding was received from the Department of Veterans Affairs in April 2000 to establish a home-based program for veterans and veterans’ widows or widowers who had heart failure. The understanding was that nonveterans would be included in the program, and the purpose was to facilitate changes in practice and develop a model of care for patients with heart failure. Ethics approval was obtained from the South Eastern Sydney Area Health Ethics Committee (Southern Section). Clinical care was conducted within an environment of usual care clinical management; a selective research protocol was not used. Patients were enrolled in the program after admission to a hospital for heart failure. The program design was that patients remained in the program for an unlimited period, and the level of service provision was determined by a comprehensive needs assessment, not a prescribed protocol. Levels of interaction ranged from monthly telephone calls to twice-daily home visits. The heart failure nurse specialists were available to patients and the patients’ families via a paging service 24 hours a day, 7 days a week.
Sample
A selective, purposive sampling method was used.19 The sampling of clinical notes was determined by the number of patients enrolled in the home-based program at the time of the 12-month report to the Department of Veterans Affairs. Patients’ eligibility for the home-based program was broad and diverse, reflecting real-world clinical practice.20 No patients were excluded from the program on the basis of cognitive dysfunction, and patients were visited in a variety of settings: the patients’ own homes, nursing homes, and hostels. Patients with heart failure of any origin were recruited in accordance with Framingham criteria.20 Five clinical nurse specialists were involved in the clinical care of patients in the home-based program. All nurses had specialist qualifications in critical care, and each nurse had at least 15 years of nursing experience.
Data themes were verified by heart failure nurse specialists. Content analysis was used to analyze the data, because it is useful in exploring processes, relationships, and dynamic phenomena.21 Transcripts were analyzed by using the constant comparative method, and the analysis was facilitated by memos.22 In the initial phase, open coding was used, and subsequently key concepts were identified and developed. Similar incidents, reflections, and comments were grouped into categories. Concepts and constructs that emerge from the data were tested and authenticated with nurse specialists by using comparative analysis. This systematic approach was useful in exploring activities of the nurses.22
Results
At the time of the 12-month report, 255 patients were enrolled in the home-based program. Case-note data covered 2460 interactions with patients of the nurse specialists and the patients’ families and healthcare providers. The patients’ characteristics (see Table) were representative of community populations of patients with symptomatic heart failure; a considerable proportion had preserved systolic function.22 This group was an elderly cohort; the median age was 81 years (range 31–100 years), and 46.3% were female. English was not the first language for 25% of patients, reflecting the cultural diversity of the community. Case-note documentation revealed transactional as well as interactional phenomena.23 Seven primary themes emerged from the data describing the activities of the nurse specialists. These themes are described along with verbatim extracts to illustrate the themes, document interactions, and provide insight into activities and clinical decision making.
| The nurse specialists’ clinical notes reflected clarification, reinforcement, and individualization of information for patients with heart failure.
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Monitoring Signs and Symptoms and Reinforcing Patients’ Self-Management: Identifying Trends and Appropriate Action
The unpredictable course of illness among patients with heart failure dictates an approach of vigilance, particularly in elderly patients with comorbid conditions. Despite best intentions and a foundation of information and education, achievement of self-care behaviors is problematic. Clinical note entries predominantly depicted a review of clinical signs and symptoms, indicating that this role is a central one of heart failure nurse specialists.
Weight 41 kg, weighs self each day. Aware of significance of any weight gain. Discussed self-care strategies. Will contact Dr W or us if any weight gain or increase in shortness of breath noted.
Daily weigh not being done. Same encouraged. States that he has very swollen legs. Plan home visit tomorrow afternoon.
Weight up 2.6 kg. Increase in leg oedema. Chest: bibasal crackles. To see registrar in chest clinic tomorrow. I have written a letter [to physician] outlining change in fluid status and have requested that they review.
Although Mrs H would appear to be maintaining her fluid restriction, her salt intake is high as she favours packet soups and vegetables. Feels tired, "not right."
Note recently commenced carvedilol and Lasix [furosemide] decreased from 40 to 20 mg. Weight 62 kg his scales; 65 kg our scales. Has gained 2.5 kg in 1 week. More short of breath—now has difficulty walking dog.
It is apparent that in addition to assessing clinical signs and symptoms, the nurse specialists processed this information within the context of each patient’s clinical condition and in relation to the patient’s usual activities. Nursing actions were prioritized within this context.
Organization, Liaison, and Consultation With Other Health Professionals to Deal With Changes in Patients’ Clinical Status
Documentation of clinical interactions reveals the complexity of management of patients with heart failure. Clinical vignettes indicate the intricacy of management, the occurrence of comorbid conditions, and the involvement of multiple health professionals. The important roles of vigilance, liaison, consultation, and communication are illustrated:
Did not take Imdur [glyceryl mononitrate] yesterday as she felt dizzy. Suggested that she take the Imdur of a night time. Told her to remain on 80 mg Lasix [furosemide] over the Christmas period. If she remains euvolemic, will try to reduce Lasix dose to 40 mg.
BP [blood pressure] 105/60 [mm Hg], P [pulse] 80[/min], resps [respirations] 24/min, chest bibasal crackles.Weight 75.4 kg. Not sleeping well. Not SOB [short of breath] of a night but is on exertion. Phoned pathology. Planned UEC [urea, creatinine, and electrolytes] not arranged. Organised UEC and FBC [full blood count] for today, and they will fax me with the results. Plan home visit.
Weight up to 76.3 kg. Creps [crepitations] to midzones. Increased leg oedema. D/W [discussed with nurse colleague]. She will contact Dr R. Butterfly venous cannulation to forearm and furosemide administered. Plan: Lasix [furosemide] 160 mg stat. I will review this pm.
Discussed with Dr B—senior cardiology registrar—he recommends increasing dose of warfarin to 4 mg and to check INR [international normalized ratio] on Monday.
Mrs Bowen is not seeing a cardiologist. Advised to get a referral from her GP [general practitioner] to see a cardiologist. Weight stable. No issues. Plans to get a referral to see a cardiologist. Will phone next week. Has sinus problems—for ENT [ear, nose, and throat] review.
Answered phone call from Mr C on Saturday. Returned call. Has lost 5 kg since increase in Lasix [furosemide] dose last Friday week. Cannot see properly. Feels sleepy. Dr L to visit today. I will home-visit today.Looks unwell. Pulse 36/min, BP [blood pressure] 135/60 [mm Hg], poor vision, nauseous +++.
Signs of digoxin toxicity.
Checked medication dosette box.
Should be on digoxin 125 µg daily but is getting digoxin 500 ug daily.
(was on 2 x 62.5-µg tabs as per medication chart but daughter has inadvertently dispensed incorrect amount).
Admitted with: hypoglycaemia, BSL [blood sugar level] 1.4 mmol/L; hyperkalaemia, K 6.4 mmol/L; digoxin toxicity 9.8.
The preceding extracts denote close clinical scrutiny of patients’ clinical conditions and derivation of diagnoses in the context of clinical signs and symptoms. Referral, collaboration, and communication with other health professionals are also apparent.
Clarifying and Reinforcing Patients’ Self-Care Strategies
The importance of promoting patients’ self-care strategies is well established in heart failure management.10,11 Activities documented in clinical notes reflected the need for nurses to continually clarify, reinforce, and individualize information for patients with heart failure, particularly within the context of comorbid conditions.
Saw GP [general practitioner] about dental situation and he was reluctant to have Mrs B on antibiotics at this point, so everything is on hold at the moment. No shortness of breath or oedema. Has not been weighing herself of late but will restart for when I phone next week!
Discussed self-care strategies and the importance of contacting local doctor if symptoms worsen. Significance of weight gain explained.
Well but has cystitis. Discussed the need for vigilance with fluid contraindication between cystitis and heart failure. Walking well, limited more by claudication than shortness of breath.
Has a good understanding of heart failure. Takes an extra Lasix [furosemide] if weight increases. BIPAP [bi-level positive airway pressure] at night. Sees LMO [local medical officer] regularly.
Not weighing himself. . . . Got out of the habit. Dr feels he may be recovering from a recent stroke.
Assisting Patients in Their Desire to Avoid Institutionalized Care
Despite a feeling of isolation, many patients appeared to struggle to maintain independence and remain in their home. Attempts to facilitate preemptive hospitalization were often refused. Such a situation most likely infers a burden of responsibility on nurse specialists as they struggle to maintain patients’ safety and comply with the wishes of patients and the patients’ families.
Living with sister at the moment. Has been unwell with chest infection. LMO [local medical officer] wanted her to come into hospital but she refused. Very tired and lethargic—SOB [short of breath]. Weighs herself—stable. Said that her Doctor told her that she was using her insulin incorrectly.
Does not want to go to nursing home, this is his worst fear. Not appropriate to be cared for at home due to poor health and gross oedema.
More short of breath and anxious ++. Does not want to go to hospital. Has not been weighing herself.
Discussion with T and E. She does not want to go into a nursing home. At present not eating well/tired/listless. States that she is not depressed. Would like to try to stay at home with increased services (Meals on Wheels/vital call/Webster pack).
Home tomorrow for a 2-day trial. Will have permanent status in nursing home but feels that she needs to give home a go. I will phone tomorrow. Home visit Thursday.
Identifying Patients’ Psychosocial Issues: Dealing With Social Isolation
The patients in the study were elderly patients, and the majority of them lived alone. Fear of decompensation, worsening signs and symptoms, comorbid conditions, and transport difficulties contributed to social isolation.
Sister and niece staying from New Zealand for 1 week. Mrs B was fearful of being home alone prior to this latest admission. Welcomes follow-up we are able to provide. I will phone tomorrow and arrange home visit for next week.
Very distressed and wanting CS [community psychiatric nurse] phone number. Mrs B is distressed about her family, who she feels are not supporting her despite living in her house. Also frustrated at being stuck at home.
Phone call from community dietitian. Mrs C is to try a new meal programme. She is concerned about Mrs C’s mood and feels that she is depressed and that she needs to get more socially active.
Fearful to leave home alone in case she has another turn [adverse event]. Lives with brother. Given reassurance and support.
Mrs H has not yet been to see Dr G due to extreme hot weather; however, she says that she will see him tomorrow. Appears very down on the telephone. Feels lonely and that nobody cares. Missing son who will not be returning to visit for some time.
The high rate of psychological and social distress, documented in other studies,24 is illustrated by the preceding vignettes.
Providing Support: Journeying With Patients and Patients’ Families
Transcripts revealed the important role of nurse specialists in providing support not only to patients but also to the patients’ family members and to health professionals. The presence of a nurse specialist appeared to provide comfort, continuity, and security to patients. In several entries, emotional dependence on the nurse specialist was evident. This dependence has important implications for the establishment of professional boundaries and facilitation of opportunities for debriefing and support of staff.
Spoke with sister.Mrs C d/c [discharged] to B nursing home.
Not settling very well.
Appeared disorientated yesterday. Generally miserable.
Spoke with sister. Mrs C remains unwell. Unable to mobilise at all. Waiting for son to return in a few weeks and then will "give up."
R able to breathe easier today.She is worried that we may stop our contact with her. Reassured that we are in for the long haul! Plan home visit tomorrow to check weight.
Dropped in to see V. Feeling much better, taking dog for a walk.
Plans to return to gym [heart failure rehabilitation program] tomorrow.
Very upset that it has been so long since I last contacted her (17 days). Mrs C could not find my contact number.
| Emotional dependence of patients and patients’ families on the nurse specialists was evident.
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Helping Patients and Patients’ Families Deal With Death and Dying
Analysis of clinical notes revealed the important role of nurse specialists in helping patients and patients’ families deal with end-of life issues. Nurse specialists were obviously sought out to decipher and interpret information and to assist patients and patients’ families in making decisions.
Has decided against MVR [mitral valve replacement]. Has discussed resuscitation issues with family. Does not wish to be resuscitated.
Transferred to CCU [coronary care unit]. CO2 retention. Condition deteriorated. Critical orders, patient and wife have agreed to DNR [do not resuscitate]. Mr C died in CCU.
Marked deterioration in condition. Now uremic. NFR [not for resuscitation] orders. Palliative Rx [treatment]. Family given support.
Saw G today. Son had arrived from Melbourne and we had a long chat whilst G was in the shower. Explained G’s heart failure condition, the poor prognostic picture and our involvement. Gave the DVA [Department of Veterans Affairs] phone number for "getting your affairs in order."
T phoned early this morning very upset and told me that she could not wake G. When I arrived G was dead, his body was cool, indicating he had died some time ago. T had not wanted to disturb him during the night as he had been restless.
Visit to A at home. Has a good supportive network of friends and neighbours. A has major compliance problems in relation to weight/diet/medications/lifestyle. We discussed the prognostic implications of poor control of his diabetes and heart failure.
Not for inotropes. D/W [discussed with] family. Not for resuscitation. D is comfortable at present.
| Nurse specialists were sought out to interpret information about end-of-life decisions.
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Discussion |
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Documentation of the activities of heart failure nurse specialists reflects the multifaceted nature of expert practice.25,26 Parallel with expert clinical assessment and the advanced practice role is evidence of sensitivity, understanding, and journeying with patients and patients’ families as the illness progresses. Clinical notes reveal variability in patients’ adherence to self-care strategies and a need for vigilance and reinforcement to promote patients’ self-care behaviors. Dealing with these changing circumstances reveals an expert, dynamic, and proactive practice with interventions and actions predicated by the changing conditions and demands of patients. Examination of the practice of heart failure nurse specialists reflects appropriate responses to a dynamic clinical condition and the individualization of care plans according to the preferences of patients and physicians.
Our findings concur with those of other studies27–31 in that self-care, compliance, and vigilance are primary issues in the management of patients with heart failure. The description of activities of heart failure nurse specialists has implications for models of nursing care, discharge planning, and community follow-up. Importantly, this snapshot of the activity of expert heart failure nurses provides insight into the complexity of the role. Measurement of nursing workload is inherently problematic, and the assumption that nursing is a linear activity is erroneous, because nurses commonly perform a number of activities simultaneously. Nursing workload is often contextual and not easily measurable.32 Analysis of case notes provides insight into the "hidden" work of nurses in caring for chronically ill patients; traditional outcome measures such as morbidity, mortality, and rehospitalization do not accurately reflect the scope and attributes of expert nursing care.
Emergence of the theme of assisting patients in their desire to avoid institutionalized care has particular significance for the aging of our society and the provision of service. Although the general population is becoming increasingly old, many persons do not want institutionalized care.33,34 Dealing with end-of-life issues, delivering care in isolated home environments, and supporting patients and their families during the course of a chronic illness can place a great burden on nurses. The apparent dependence of patients on the nurses in this study reveals a need for nurses to receive collegial support, clinical supervision, and measures to ensure maintenance of professional boundaries. The social isolation evident in many of the case note entries illustrates the important role of community-based nurses in maintaining patients’ connection with the outside world. Importantly, in many instances, nurses in this study functioned as confidantes, conduits to services, and sources of expert opinion.
| The nurse specialist functioned as a confidante, a conduit to services, and a source of expert opinion.
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Death is inevitable as heart failure progresses.35 Patients in home-based programs often have New York Heart Association class III or IV disease, are elderly, and are coming to the end of life. The challenge evident for heart failure nurse specialists is to deliver care with hope and optimism but within a scope of realism and preparation for the inevitability of death. Analysis of case notes reveals that a significant role of community-based heart failure nurse specialists is to prepare and support patients and patients’ families at the end of life. End-of-life care was often performed in conjunction with palliative care services.35 The rapport and intimacy were evident in the analysis of interactions between patients and nurses, and there was a strong sense of continuity associated with presence of nurse specialists along the care continuum. Contact was maintained with patients and their families during periods of decompensation across care environments, ranging from the intensive care unit to the nursing home and hospice.
Study Limitations
The purpose of the study, to derive rich, contextual data to provide insight into the activities of heart failure nurse specialists, influenced the choice of study design. Purposive sampling and the setting of an urban, Australian healthcare system potentially limit the ability to generalize findings to other settings. In addition, analysis of clinical notes external to interactions with patients during the delivery of care may alter the perception of events and omit important contextual information that can be obtained by other methods, such as ethnography.36 We sought to overcome this limitation by verifying data and events with heart failure nurse specialists. The contemporaneous nature of clinical notes favors an accurate determination of events, and this study reflects the perceptions and interpretations of nurses, not necessarily those of patients. We think that using a large number (n = 2460) and broad spectrum of clinical interactions to facilitate generation of data countered the limitations just described and justified use of the methods we chose.
Implications for Practice
Contemporary trends toward role diversification, particularly in management of patients with heart failure, convey critical care nurses beyond the structured and supported boundaries of the intensive and coronary care units. Consequently, the dynamics and attributes of clinical practice in areas such as the home environment need to be understood. Clearly, heart failure nurse specialists must have an eclectic mix of skills, from clinical assessment skills to communication and negotiation skills. Appreciation of this experience is important in curriculum development, theory generation, and domains and dimensions of clinical practice. Because most of the information that influences cardiovascular nursing practice is derived from the acute care setting, a need exists to articulate and describe models of care to enhance nursing practice in novel settings. The modified narrative analysis method we used reveals the individualized experience of the patients in dealing with heart failure and the nurses’ response to these occurrences. A growing body of evidence affirms that using heart failure specialists results in improvements in patients’ outcomes.7 Importantly, many of the elderly persons serviced by these programs cannot access institutionally based models of care, such as specialty heart failure clinics, largely because of transport issues and frailty.6–9 The description and exploration of the role of heart failure nurse specialists provides insight into key activities, responsibilities, and attributes needed to perform this challenging, expert nursing role. Information derived from this study should assist in preparing nurses for advance practice and should influence the research agenda for home-based management of heart failure.
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ACKNOWLEDGMENTS |
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REFERENCES |
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This article has been cited by other articles:
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  J. E. Hupcey, J. Penrod, and K. Fenstermacher Review Article: A Model of Palliative Care for Heart Failure American Journal of Hospice and Palliative Medicine, October 1, 2009; 26(5): 399 - 404. [Abstract] [PDF]
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