The role of the nurse in the education and support of patients and carers

Heart failure is a complex pathological syndrome resulting from a number of cardiac disease processes and leading to the development of a number of clinical symptoms that defy simple definition.14 Symptoms of heart failure include dyspnea, orthopnea, paroxysmal nocturnal dyspnea, fatigue, decreased appetite, and peripheral oedema, among others.4,10 The clinical course of heart failure is characterized by recurrent readmission with congestion and an increased burden on health care services.6,11,13 Pharmacological therapy, such as with ACE inhibitors, spironolactone, and beta-blockers, has proven to benefit survival.21 Non-pharmacological therapies, such as multidisciplinary team management programs that include nursing interventions, have been demonstrated to reduce readmission rates, especially in high-risk groups of patients such as the elderly2,5,12,18,19 (Figure 1). In addition to reducing readmission rates, nursing intervention has been shown in studies to improve medication prescription, medication compliance, improve understanding of the condition, and improve quality of life in the high-risk heart failure patient. Pharmacological therapy, including drug titration within protocols Patient education and self-care Psychosocial support Coordination of services It is essential that nurses possess appropriate knowledge and practical experience in medication prescription for heart failure patients. Within this role, nurses schedule patients for titration of their medication and follow-up of their care. The importance of this role is shown by the evidence that prescribing to the maximum-tolerated dose improves patient outcomes (ESC guidelines: Swedberg et al. 2005). Treatment of heart failure with diuretics improves symptoms such as dyspnea and ankle edema and improves exercise tolerance.21 The ESC guidelines recommend that increases or decreases in diuretic dose should be monitored for clinical response within one week. Metolazone, a potent thiazide diuretic, has a complementary effect in combination with loop diuretics and is recommended only as a drug of “last resort”. Following initiation of diuretic therapy, patients should be very carefully monitored for potential side effects of hyponatremia and worsening of renal function.21 ACE inhibitors and angiotensin receptor blockers may be titrated at 2-weekly intervals. In these patients, renal profile and blood pressure measurements are repeated within 2 weeks, with monitoring for worsening renal function or hypotension <90 mmHg. Potential side effects should be discussed with the patient and, particularly if symptoms of dizziness develop, patients should be advised to notify the heart failure service. Patients should also be offered advice on the use of non-steroidal anti-inflammatory and COX-2 inhibitors, as many such medications are available over-the-counter.21 Beta-blockers are recommended in all cases of mild, moderate, and severe heart failure, either ischemic or non-ischaemic, and in patients with reduced left ventricular ejection fraction.21 Titration is recommended at 1–2 weekly intervals. Patients may potentially develop transient worsening heart failure symptoms, hypotension, and bradycardia.21 Aldosterone antagonists are indicated for NYHA III or IV heart failure. Management requires intensive follow-up after medication initiation. The renal profile is checked at 5–7 days after initiation of therapy to measure serum potassium and creatinine and is repeated thereafter until levels are stable; the renal profile is then checked every 3–6 months.21 In the presence of potassium levels >5.5 mmol/L or creatinine >221 µmol/L, the dose or frequency of the aldosterone antagonist should be reduced. If there is evidence of potassium >6.0 mmol/L or creatinine >310 µmol/L, the medication should be stopped. Patients may require a reduction in diuretic dose when aldosterone antagonist therapy is introduced.21 Liaising with the general practitioner (GP) and pharmacist is an important role for the heart failure nurse when medications are being titrated. Changes in medication can be confusing for patients and treatment should be tailored to the needs of each individual. Many patients, for example, are elderly, and blister packs prepared by the pharmacy can simplify the medication. Supervision or assistance by a family member is an alternative. It is important to explain the purpose of each medication to the patient, giving both its trade and generic name and potential side effects as outlined previously. Patient education may be initiated either prior to discharge or following discharge.2,5,12,18,19 Which of these approaches is most advantageous to patients and their carers remains unclear. Topics for patient education should follow the ESC guidelines21 (Table Table 1). Education of the patient at our institution begins during the inpatient period. Patients receive a minimum of three 30–60 minute sessions of education, and every effort is made to include their carers in this program.11,12 A booklet for later reference is also provided.9 It should be stressed that education continues up to and beyond discharge. Symptoms that are covered during patient education include dyspnea, fatigue, ankle swelling, loss of appetite, dizziness, and palpitations. Patients are particularly encouraged to report any change in their symptoms. Episodes of paroxysmal nocturnal dyspnea should be reported by telephone the next day, as should weight gain unresponsive to adjustment in diuretics. During the inpatient period, patients are monitored daily. At discharge, patients can be monitored via telephone for any signs of symptom deterioration.12 Scheduled clinic visits ensure assessment compliance with medications, titration of medications, and monitoring for potential side effects, as well as any signs of deterioration. Patients should have the facility to report a deterioration in their condition and are encouraged to telephone the heart failure nurse if this occurs.12 In cases of weight gain, nurses are permitted to change the diuretic dose over the telephone, guided by accepted hospital protocols. Other reported symptoms are triaged by the nurse and a follow-up is scheduled based on the assessment. Education is based on principles of self-care that are supported by the heart failure nursing literature.1,4,8,17 According to 15, self-care may be defined as: “The practice of activities that individuals initiate and perform on their own behalf in maintaining life, health, and well-being”.15 A self-care agent is: “An individual who possesses the ability to engage in activities that promote and maintain healthy behavior” which are activated when there is an identified need.15 This is the basis of the education that patients receive from their nurse. A definition of self-care that may be more pertinent to heart failure was provided by 1717: “The naturalist decision-making process involving the choices of behaviors that maintain physiologic stability (self-care maintenance) and the response to symptoms when they occur (self-care management).” Breaking this definition down, self-care maintenance is where patients monitor their symptoms on a daily basis and adhere to recommended treatments. Self-care management is where there is recognition of symptom deterioration, evaluation of that deterioration, treatment implementation, and evaluation of treatment effectiveness.17 For self-care in heart failure, it is important that patients understand their condition and use decision-making skills to choose the appropriate action, which may be directed by the nurse or doctor by telephone. Before patients can initiate self-care, they must “gain knowledge of their condition, reflect on its meaning, determine the course of action open to them and assess the effectiveness and desirable outcomes of the measure they employ”.15 The role of the heart failure nurse is exemplified by Orem in these terms: “the knowledge required must be imparted to them from individuals with knowledge and expertise”.15 A named nurse system is advantageous so that each patient has an identified contact following discharge, should they require reassurance or assistance if symptoms of heart failure worsen. A diagnosis of heart failure is very distressing for patients and their carers, and they require emotional and practical support. Providing appropriate emotional and practical support helps to reduce readmissions.7 Emotional support can be provided not just by health care personnel but by partners, family friends, and the extended community.1,8 Patients living with a partner show better compliance with medications. Practical support may be provided by assistance with activities of daily living and can take the form of help in transportation and the preparation of meals, especially for the elderly after their initial diagnosis. Depression, anxiety, and fear are common, both in patients and carers.1,8 It is important to identify the cause, looking into role changes, changes in financial circumstances, and the social isolation that may accompany a diagnosis of heart failure. Use of the Hospital Anxiety and Depression scale can identify those at risk, who can be then referred to other members of the multidisciplinary team.16 It is important during this process to allow patients time to express their concerns and fears, and to include carers in this discussion. The heart failure nurse has a diverse role that has extended and expanded beyond the traditional role of nurses. The skills required by heart failure nurse include communication and organizational abilities. Nurses must act in a supportive role in bringing about lifestyle changes to assist heart failure patients maintain an improved quality of life. This is best achieved when an open and therapeutic relationship has developed between the patient and nurse. It is important for the nurse to act as the patient's advocate and to remember that patients are individuals. The nurse must also liaise with other health care professionals so that a holistic approach is provided for patients.