The Role of the Heart Failure Specialist Nurse


Owena Bosson RGN, DipN, BSc(Hons). Heart Failure Specialist Nurse,
Royal Glamorgan Hospital, Llantrisant, South Wales.

Congestive heart failure, the specialist nurse, quality of life.


Congestive Heart Failure accounts for approximately 5% of all medical admissions to hospital (National Service Framework, Department of Health 2000). Its prevalence is expected to continue to rise over the next several decades due to decreased mortality from cardiovascular disease and the growth of the elderly population. The National Service Framework for Coronary Heart Disease (CHD) in Wales (The National Assembly for Wales 2001) sets aims to health authorities, local health groups and the Specialist Health Services Commission for Wales in tackling CHD within Wales. The key actions for heart failure patient care is to provide a comprehensive and cost effective heart failure service for all, and to implement an agreed pathway for the care of those with chronic heart failure. An agreement reached with 1-2 tertiary centres to assess resistant/end stage heart failure patients within an agreed protocol and the development of a strategy for the palliative management of symptomatic endstage heart failure.

During the era of uncertainty in health care, cost-conscious tactics are being implemented widely among primary and secondary health care sectors. Congestive Heart Failure (CHF) has been the focus of numerous recommendations, 78% of patients with CHF have at least two admissions per year for CHF exacerbation and 16% have had three admissions per year (McMurray et al 1993). It has been speculated that many of the 1 million CHF hospitalisations that occur each year could be prevented by improved evaluation and care.


Heart Failure constitutes a major public health problem and it is the leading cause of morbidity and mortality in most developed countries (Paul 1997). The Framingham Heart Study showed that once patients were diagnosed the 6-year mortality rate was 85% for men and 67% for women, this corresponds to a death rate four times greater than in the general population of the same age (Moser & Worster 2000). Hobbs (1999) states that 5 years after diagnosis less than 50% of these patients are still alive.

Heart Failure can result from coronary heart disease, a culmination of long-standing hypertension, from advanced cardiomyopathy or valvular dysfunction (Connolly 2000). Due to functional abnormalities the heart remodels itself by changing shape. In left ventricular systolic dysfunction, the myocardium of the left ventricle becomes thin and enlarged, whereas in left ventricular diastolic dysfunction the myocardium of the left ventricle becomes thick and noncompliant. Both types of left sided heart failure lead to symptoms of dyspnoea and fatigue. Other signs and symptoms include peripheral swelling, difficulty sleeping in a supine position, coughing, and the inability to perform normal activities of daily living and a sudden weight gain due to fluid retention. Light-headedness, dizziness and palpitations are also common and can indicate cardiac cachexia (Connolly 2000).

During a study that examined data from general practices and 2.1 million patients, the age related prevalence of heart failure in 1996 was 9.7 per 1,000 males and 8.2 per 1,000 females (Majeed & Moser 1999). Paul (1997) suggests that 78% of patients with CHF have at least 2 admissions per year for CHF exacerbation and 16% have had 3 admissions. Stewart & Blue (2001) reported that hospital admissions for patients with heart failure is increasing rapidly and re-admissions occur within 3 months in at least 8% of all patients discharged with a diagnosis of heart failure.
As the grim prognosis of heart failure grows, health care providers are constantly looking for factors that may predict patient outcomes, specifically rehospitalisation and death as a focus for new interventions. Physiological factors such as left ventricular ejection fraction and exercise tolerance have traditionally been measured as predictors of heart failure decompensation and mortality, psychosocial factors such as quality of life, social support, depression and anxiety are now also being recognised as important and relevant predicting factors (Moser & Worster 2000). Approximately 50% of people with heart failure are symptomatic and as a result have a reduced quality of life (Dahl & Penque 2000). Heart Failure is graded on the extent of their fatigue and dyspnoea; a tool often used to assess their condition is the New York Heart Association Classification (Figure 1)
New York Association Heart Failure Classification

Class 1 No Limitation. Ordinary activity does not cause undue fatigue, dyspnoea, or palpitations
Class 2 Slight limitation of physical activity. Comfortable at rest, but ordinary physical activity results in heart symptoms.
Class 3 Marked limitation of physical activities. Comfortable at rest, but less than ordinary activity causes heart failure symptoms.
Class 4 Symptoms of heart failure are present at rest. If any physical activity is undertaken, discomfort is increased.

Quality of life is defined by Moser & Worster (2000) as a
"Multidimensional concept referring to a person's total well-being including his or her functional capacity, psychological status, social functioning, physical health and health perceptions."
Quality of life is a relatively recent concept to be addressed in heart failure research. In studies of quality of life among patients with heart failure, patients commonly report psychological distress, including depression, hostility and anxiety, limitation in their activities of daily living, disruption of work roles and social interaction with friends and family, and reduced sexual activity and satisfaction (Grady 1993). Interestingly they state that disease severity as indicated by left ventricular ejection fraction is unrelated to measures of emotional distress. This finding highlights the importance of not assuming that patients with the most severe disease will automatically have the worst psychological status or that those with less severe disease will have none. Konstam (1996) reiterates this and notes that patients describe the physical limitations, reduced activities of daily living, and inability to work imposed by their disease. Patients experience depression, anxiety, and reduced social functioning; they therefore rate their quality of life as poor.
The economic costs of treating heart failure are considerable. As resources for providing health care are limited it is essential to consider both the cost and benefit to the patients once diagnosis is made. Strategies for improving the cost effectiveness of care involves identification of the major factors which produces costs and then target therapy to reduce this element, while at the same time improving symptoms and increasing duration and quality of life. When the morbidity rate is reduced major reductions in cost must result from a reduction in the cost incurred by repeated hospitalisation (Giles 1996). Heart failure management should include symptom relief, quality of life improvement and prevention of further heart failure progression (Riegel 2000); they also suggest that heart failure treatment involves pharmacological intervention, risk factor reduction, dietary adjustment, exercise and education.
Currently there are several strategies being used to reduce the total cost of care for CHF patients by lowering acute care use by principally avoiding inpatient admissions. One such strategy is the development and implementation of a nurse-directed multidisciplinary plan of care for patients diagnosed with heart failure (Rich et al 1995). They suggest that the plan of care should include intensive education about heart failure, a detailed drug analysis, early discharge planning and enhanced follow-up through home health care and telephone contact. Similar results were found in another study, which utilised a cardiologist in addition to the heart failure centre for continued assessment, drug management and education. The results from this study cited by Dahl & Penque (2000) showed an 85% reduction in hospital readmission's and improved functional status.

Patients with heart failure are heavy users of the health care system and therefore require close clinical management and encouragement to manage and identify their symptoms. The specialist nurse (SN) is in an ideal position to do this as she has the ability to focus on the clinical needs of the patient and also the educational and supportive needs of the patient and their family (Dahl & Penque 2000). In order to decrease the frequency and cost of each patient's hospital admissions it is essential that inpatient and outpatient care is effectively co-ordinated.
The aim of the heart failure programme in the community is to improve patient outcomes and decrease hospital admissions and therefore cost. Fonarow et al (1997) suggest that patients derive confidence from regular personal contact with a team dedicated to their chronic disease. Patients attending the heart failure clinic are seen by a cardiologist who obtains a full history and performs a medical evaluation. The SN also sees them and the basics of heart failure reiterated (Paul 1997). She also suggests that a pharmacist evaluates the patients' medication and reviews the purpose, dosage and side effects of each drug. The patient should be given information about each drug accompanied by a chart stating the appropriate dosing and schedule in order to increase and ensure understanding of the drug regimen, during subsequent clinic appointments the medication regimen should be reinforced, it is valuable for patients to hear this information repetitively as their medications are frequently altered or adjusted. The SN should spend time with the patient evaluating their dietary and exercise compliance, reiterating and discussing their daily weight monitoring and its significance to their treatment management.
A key role of the SN is to involve the patient and their family members in their own plan of care therefore empowering the patient to assess his or her condition. By aiming to ensure that they can correlate and understand their treatment regimen, can recognise signs and symptoms and understand their treatment regimen, and understand the importance and significance of any changes and the appropriate action to be taken. Deaton (2000) notes that heart failure nurse support has positive affects on patient outcomes, for example, the moment patients experience problems or changes they are able to access a health care provider and the problem dealt with quickly and therefore in many cases hospitalisation avoided. Beattie (2000) reinforces the importance of patient education, stating the importance of early sign and symptom recognition and knowing when to report any changes, for example a weight gain of 2-3 pounds overnight or 5 lbs in a week, changes in activity tolerance, onset of an acute illness, paroxysmal nocturnal dyspnoea or orthopnoea. She also notes the importance of patients being able to recognise and to avoid situations or behaviours that may lead to acute elevations in blood pressure and ischaemia, which will prevent unnecessary exacerbations. Education about medication effects must be repeated and reinforced. Risk factor management must also be maintained, that is, abstinence from smoking, maintaining a normal weight, healthy eating and healthy emotional coping strategies. Weinberger & Kenny (2000) also note the importance of ensuring that the patient maintains an appropriate level of daily activity, which will ultimately decrease oxygen demand and increase exercise tolerance. They also note that educating, supporting and assisting the patient and family in understanding and coping with the chronic nature of CHF as well as providing realistic long-term expectations is an essential element of the SN's role.
As previously mentioned one of the primary goals is to decrease the readmission rates and improve the quality of life for CHF patients. A key mechanism to achieve this goal is to ensure that each patient has a contact or resource, especially if CHF is a new diagnosis. For many independent patients, having a contact number or address may be an adequate resource; others will need more long-term support. Patients should receive a follow up call from the SN approximately one week after discharge and further input and support implemented according to the patients and the families needs, to answer questions, evaluate understanding and adherence to the treatment regimen and to offer support and reinforcement when necessary. Krumholz et al (1997) discuss the importance of emotional support as a predictor of cardiovascular events. They note that patients without emotional support had a three-fold increase in the risk of cardiovascular events in the year after admission compared with patients with emotional support. Lukkarinen & Hentinen (1998) discuss gender differences and social support; they found that the relationship between lack of emotional support and greater incidence of events was strong for women but not as significant in men.

Major symptoms of CHF include dyspnoea and fatigue, which can often occur at rest, it is therefore often difficult for the patient to function independently especially outside their homes, therefore making clinic journeys difficult. For this reason it is essential that these patients have frequent contact and support from the SN in the home environment. In a survey of 100 home care cardiac patients, patients following one home visit were able to answer a cardiac health questionnaire correctly 58% of the time, following home care intervention they answered with 90% accuracy (Goodwin 1999). Goodwin also notes that patients fail to adhere to prescribed treatments for many reasons, including lack of understanding of the treatment plan, lack of motivation or belief that the treatment was necessary or would be effective, the SN is therefore in an ideal position to provide advice and information in a more familiar and less restrictive environment for the CHF patient.

Heart failure must be recognised as a terminal disease. Many patients underestimate the seriousness of their illness with 50% of patients thought not to have known they were dying (McCarthy et al 1996). Stewart & Blue (2001) note that many CHF patients should be informed of their diagnosis but many doctors do not do this, and avoid referring to heart failure as they believe that patients find it frightening. They also note that the palliative nature of the disease process needs to be discussed with the patient and their families if they are to make informed choices about their treatment aims and the plan of care for the future.


Congestive Heart Failure is a major public health problem. Hospital admissions are often unplanned readmission's that have a high mortality rate. A co-ordinated disease management approach may be implemented that includes early assessment in the hospital, comprehensive education, and behaviour modification in order to improve disease management and improve patients' quality of life. Nurses are the integral providers involved in educating, coaching, monitoring and supporting patients and their families during the CHF disease process. Smith et al (1997) states that to obtain better outcomes for the patient and to control and reduce costs, the care of CHF patients must be moved to specialists in heart failure clinics. Riley & Blue (2001) note that a SN as part of a multi-disciplinary heart failure team has an important role in educating patients and their families on the disease process, management and control of symptoms and also providing support following diagnosis of CHF.

In conclusion, the SN can assess the signs and symptoms of cardiac destabilisation, provide education, emotional support, counsel, develop behaviour modification techniques, monitor therapy compliance and also act as the healthcare liaison for the patient and their family. With this in mind, the ultimate aim is to prevent rehospitalisation, increase functional ability and improve quality of life.


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First Published October 2003