Providing Palliative Care in the End

Providing Palliative Care in End-stage Heart Failure

Salima Hemani, MSN, RN; MariJo Letizia, PhD, APN/CNP

Journal of Hospice and Palliative Nursing. 2008;10(2):100-105. ©2008 Lippincott Williams & Wilkins
Posted 05/30/2008
Abstract and Introduction
Abstract

Heart failure, characterized by the inability of the ventricles to fill or eject blood, is a significant problem for patients and their families. This disease is characterized by periods of exacerbation and remission; patients must cope with the unpredictability and variability of symptoms. Classification systems for patients diagnosed with heart failure assist providers, patients, and families in understanding the chronic and progressive nature of heart disease. In the final stage, patients have refractory symptoms despite optimal medical therapy. At this stage, patients may benefit from hospice and palliative care. This article reviews essential points in the care of patients who are living with-and dying from-end-stage heart failure.

Introduction
Despite advances in pharmacologic and nonpharmacologic therapies, the number of people affected by heart failure continues to grow. Approximately 5 million people in the United States have been diagnosed with heart failure, with more than 550,000 newly diagnosed each year.[1] The impact of this condition in the older adult population is particularly significant;[2] 50% of patients with heart failure are over 65 years of age.[3] Heart failure is a syndrome characterized by the inability of the ventricles to fill or eject blood. Characteristic symptoms of heart failure include fluid retention, shortness of breath, and fatigue, especially on exertion.[4] The illness trajectory of heart failure is highly variable despite treatment, with patients experiencing periods of exacerbation and remission of the disease.[2,5] Although patients are often able to tolerate this pattern, each episode can result in a decrease in functional status.[5] Likewise, patients face many challenges as they live with the uncertainty, unpredictability, and variability of this disease.[6]

A particular focus of attention in recent years has been the identification of patients who are at the end stage of heart failure and who would be likely to benefit from hospice and palliative care. Palliative care is the active, total care of patients whose disease is not responsive to curative treatment. Reasonable goals for all patients with end-stage heart failure include reducing the number of symptom exacerbations that require hospitalization and maintaining comfort. This article reviews essential points in the care of patients who are living with-and dying from-end-stage heart failure.
Classification of Heart Failure and Problems With Prognostication

The American College of Cardiology (ACC) and the American Heart Association (AHA) have jointly developed a classification system for patients diagnosed with heart failure. This system assists providers, patients, and families in understanding the chronic and progressive nature of heart disease and helps direct treatment interventions. At Stage A, patients are at high risk for developing heart failure because of pre-existing conditions, including coronary artery disease, hypertension, and diabetes mellitus. At Stage B, patients have structural heart disease and left ventricular systolic dysfunction but are asymptomatic at rest. At Stage C, patients have systolic dysfunction and are experiencing symptoms or they have a history of prior symptoms of heart failure. Finally, at Stage D, patients have refractory symptoms, including dyspnea and fatigue at rest, despite optimal medical therapy. At Stage D, patients are considered to be at the end stage of the disease, and they select either extraordinary treatment interventions or aggressive hospice and palliative care.[1] The New York Heart Association (NYHA) has a similar staging system for heart failure based on the functional status of the patient; stages are graded from one to four. Table 1 compares the ACC/AHA and NYHA categories of heart failure.

Sudden death can occur at any of the above stages, but specific predictors of sudden death in patients who have heart failure have yet to be fully determined.[7,8] However, sudden death is associated with unstable ventricular arrhythmia and occurs more frequently in patients with low ejection-fractions who experience syncope of unknown etiology.[1] A prolonged QRS interval and the presence of a left bundle branch block indicate poor left ventricular function and are additional markers for sudden death.[9] The possibility of sudden death, an unpredictable terminal phase, and a lack of prognostic markers of heart failure make prognostication a significant challenge for healthcare providers.[2,10,11] Several variables associated with mortality have been identified, however, including diminished functional status, cachexia, frequent hospital admissions, failure to respond to optimal therapy, and an identifiable reversible cause of heart failure exacerbation, such as anemia, infection, arrhythmia, or medication.[9] The presence of uremia, liver failure, symptomatic arrhythmia resistant to treatment, concomitant HIV, and delirium is also associated with poor short-term outcomes from heart failure.[10] Patients older than 70 years of age with multiple medical comorbidities, patients with frequent firing of an implantable cardioverter defibrillator (ICD), and patients with a history of cardiac arrest and resuscitation are also thought to have poorer prognoses.[9] Laboratory markers associated with higher mortality include an increased serum creatinine level (> 3.2 mg/dL), an increased blood urea nitrogen level (> 42 mg/dL), a decreased sodium concentration (< 134 mmol/L), and low systolic (< 115 mm Hg) and diastolic (< 55 mm Hg) blood pressures.[12]

Despite the widespread recognition among providers that heart failure is a chronic and progressive condition, patients and families may believe that heart failure is a benign condition, even in the later stages.[11] In contrast to patients who have cancer and other diseases with a clearer trajectory, patients who have heart failure may have a poorer understanding of the disease itself and a lack of recognition that heart failure is a terminal illness at the end stage.[11] Difficulty accepting the fatality of heart failure may lie, in part, with the "roller coaster" pattern of exacerbations and remission, in which patients are able to bounce back after being near the brink of death.[11] Although patient and family education ideally includes information about the disease itself-signs and symptoms indicative of exacerbation of the disease, actions and adverse effects of medications, and ways to enhance functional capacity, including lifestyle modification strategies throughout the course of the disease-information regarding prognosis, including signs of deterioration, must also be included as a process over time.[2,5]
2005 ACC/AHA Practice Guideline Update, Including End-of-life Considerations

To assist providers in the management of heart failure, the ACC/AHA practice guidelines were updated in 2005 and include end-of-life (EOL) considerations.[1] Specifically, the following guidelines are recommended: (a) ongoing patient and family education regarding prognosis for functional capacity and survival, (b) patient and family education about options for formulating and implementing advanced directives, (c) discussion regarding the option of inactivating ICDs, (d) continuity of medical care between inpatient and outpatient settings, (e) components of hospice care to relieve suffering, including opiates, and (f) examination of and work toward improving approaches to palliation. More specifically, the updated guidelines direct providers to discuss EOL care options with the patient and his or her family when symptoms persist despite optimal medical therapy. This discussion includes the role of hospice and palliative care services.[1] A review of the literature indicates that in the United States, such communication about EOL care is inadequate.[13]

A crucial component of such communication is advance care planning. Patients and families should be given the opportunity to discuss advance directives early in the course of illness and reassess preferences with changes in clinical status. Regardless of the stage of heart failure, it is appropriate and advisable for the patient to complete an advance directive. In particular, providers encourage patients to complete a Power of Attorney for Healthcare, in which patients designate a surrogate to speak on their behalf when they are unable to do so. Of course, in addition to designating the surrogate and signing the document, patients must convey their preferences for treatment and care to the surrogate. They must also be assured that such preferences can always be changed.[2]

Information about resuscitation can also be elicited from patients at any stage of heart disease. Patients and families are reminded that resuscitation only applies in a situation of cardiac or pulmonary arrest. Patients' preferences regarding resuscitation may also change over time.[9] In discussing resuscitation preferences with patients who are at the end stage of heart failure, consideration is given to the discomfort associated with these procedures. Likewise, providers recognize that resuscitation outcomes are poor with this patient population, particularly at the time of imminent death.[14,15]

The issue of ICD placement and deactivation is included in the heart failure practice guidelines. ICDs are used for secondary prevention of death from life-threatening arrhythmias, particularly for patients who have a goal of life prolongation.[1] ICDs offer little benefit to patients with end-stage heart failure, however.[16] When death is imminent, deactivation of the ICD may contribute to patient comfort, because repeated shocks delivered by the ICD can be painful to the patient and difficult for the family to witness. ICD deactivation is achieved by a noninvasive procedure: a magnet is placed over the patient's device, which disables its sensing and ability to deliver an electrical charge to the myocardium.

Discussion of ICD deactivation by providers is a component of advance care planning, yet the literature indicates that such discussion often does not occur. For example, one research investigation revealed that only one-fourth of patients with these devices were informed of the option of deactivation; of those informed, 22% of the discussions occurred within just a few days of the patient's death.[17] One recent recommendation is to incorporate patient preferences regarding device deactivation when the informed consent for ICD implantation is obtained.[18] In situations in which the patient and/or surrogate decision maker do express preference for ICD deactivation, this information must be documented and communicated to the healthcare team members.
Hospice Eligibility Criteria and Referral

In the US, patients are eligible for hospice care reimbursement when a physician certifies that they are likely to have a life expectancy of 6 months or less. Although it is difficult to predict a palliative phase with a 6-month timeline in patients with end-stage heart failure, such patients are eligible for hospice enrollment. Table 2 presents criteria to assist healthcare providers in determining the appropriateness of hospice care. Each of the criteria, including a diminished ejection fraction, refractory symptoms, and functional decline, is documented to ensure hospice coverage. Unfortunately, even with such criteria, hospice and palliative care is underused in patients who have heart failure.[6,10] Lack of hospice referral by providers is likely related to many factors, including a lack of understanding of the role of hospice, lack of an identifiable terminal phase, and concerns about meeting hospice referral criteria.[6]

Hospice and palliative care focuses on meeting the physical, psychosocial, and spiritual needs of patients and their families. An interdisciplinary approach is used, with the patient at the center of care. Fundamental goals include managing symptoms effectively and decreasing the burden of illness for patients and family members.[8] In end-stage heart failure, care is enhanced when there is collaboration between the cardiologist, who is an expert in heart failure, and palliative care providers, who are expert at dealing with terminal illness.[2,9]
Aggressive Symptom Management in Advanced Heart Failure

Patients who have end-stage heart failure experience multiple symptoms that require frequent and ongoing assessment and evaluation of interventions for effectiveness. Both drug and nondrug approaches are used. Patient and family support and education are critical, and the plan of care is coordinated with members of the interdisciplinary team. In contrast to treatment for patients who are dying from cancer, aggressive medical treatment, including infused inotropes and pacemaker placement, continues to be applicable in patients who have end-stage heart failure. However, diagnostic tests and medical interventions that do not contribute to comfort are generally not included in the plan of care.

General palliative recommendations include activity as tolerated, a diet with mild salt restriction, fluid restriction, and protection from infection. Patients are more comfortable when the symptoms of heart failure are well managed, and medications are continued as long as the patient is able to tolerate them. The following medications may be prescribed (see Table 3 for commonly used medications from each class): diuretics, angiotensin-converting enzyme inhibitors (ACE inhibitors), angiotensin receptor blockers, beta-blockers, spironolactone, and digoxin. Spironolactone is recommended for patients who have refractory symptoms and have recently been hospitalized. Careful monitoring of serum potassium is done to avoid development of hyperkalemia associated with spironolactone.[1]

In one investigation of patients with end-stage heart failure, 88% reported breathlessness, 75% reported pain, and 69% identified fatigue as troublesome symptoms.[19] Dyspnea can be particularly bothersome to patients and their families; orthopnea and paroxysmal nocturnal dyspnea may also be present. Dyspnea associated with volume overload is managed with diuretic and vasodilator therapy.[2,5] Opioid therapy provides relief because these medications reduce preload and after load; opioids have also been found to improve breathlessness, possibly because of action in the midbrain centers.[20] Nonpharmacologic treatment for fluid retention includes a mild salt restriction, possible fluid restriction, elevation of the lower extremities and the head of bed, and avoidance of nonsteroidal anti-inflammatory drugs and calcium channel antagonists. Patients may also benefit from use of supplemental oxygen by way of a nasal cannula, fans and fresh air, or a cool fan across the cheeks and face.[5] In patients whose fluid retention and dyspnea persist despite these therapeutic approaches, discussion of intravenous (IV) infusion of inotropes may take place. The decision about IV infusion therapy is made with careful consideration of the burden to the patient and family.[1]

The pain experienced by patients who have end-stage heart failure can result from cardiac and noncardiac sources; it is often reported as pain all over the body.[2] Common causes of cardiac pain include angina and edema, whereas noncardiac pain results from comorbidities and medical interventions.[5] Generally speaking, opioids are recommended for the relief of pain regardless of its etiology.[5] Nonsteroidal anti-inflammatory drugs are not recommended in heart failure because these medications reduce the benefits and effectiveness of diuretics and ACE inhibitors.[9] Nonpharmacologic approaches to pain management are also part of every patient's treatment plan. Such approaches include repositioning, relaxation, distraction, and alternative approaches, including pet therapy, music therapy, and aromatherapy.

Fatigue is also commonly reported in patients who have end-stage heart failure; this symptom is in turn related to functional impairment.[16] Fatigue results from heart failure itself, comorbidities, including anemia, infection, and nutritional deficiencies, and/or medications.[5,21] Fatigue is also related to psychological and situational factors. Management of fatigue is challenging and requires multidimensional strategies.

One additional symptom that is underrecognized and underreported in end-stage heart failure is depression.[2,9] Medications to help treat depression include selective serotonin reuptake inhibitors; tricyclic antidepressants are avoided because of the potential for hypotension and arrhythmias in this population.[5] Nonpharmacologic interventions include psychosocial and spiritual support, including involvement of social services and pastoral care. A recent prospective observational study assessed the relationship of depression to death or hospitalization in patients who have heart failure. The results suggested an increased risk of death and cardiovascular hospitalization in patients with increased depressive symptoms. Thus, it is imperative that patients with heart failure be screened for depression and that it be managed appropriately. [22]

As the patient nears death, progressive withdrawal occurs; patients generally experience increasing weakness, less interest in eating, and less interest in interacting with people and the environment. Comfort measures are provided, including repositioning and skin and mouth care, while attempts to aggressively control symptoms continue. Signs of approaching death include further changes in the level of consciousness, diminished urine output, changes in the breathing pattern, and progressive coolness in the extremities. During this time, family members are supported by members of the hospice and palliative care team.
Conclusion

In the 16th century, an anonymous physician wrote that the goals of healthcare are "to cure sometimes, relieve often, and comfort always." The goal of comfort with relief of suffering remains a priority for healthcare providers in the treatment of end-stage heart failure. Although sudden death can occur and periods of exacerbation are common in heart failure, hospice and palliative care are important approaches for patients in the end stage of the disease. Advance directives allow patients to express treatment preferences even when they are unable to speak for themselves. Aggressive symptom management and the provision of psychosocial and spiritual support are intended to prevent suffering and lead to a peaceful and dignified death.