Sarah J. Goodlin, Robert O. Bonow
Care of Patients with End-Stage Heart Disease
Advanced heart failure, defined as significant symptoms, end-organ compromise, or severe functional limitation from heart failure despite optimal medical and device therapy,1 develops in an uncertain number of persons with heart failure. Increasing numbers of persons surviving to late life, when heart failure is more common, and continuing improvement in the management of early cardiovascular illness suggest that advanced heart failure will be increasingly common in the practice of cardiology. Because 80% of persons with heart failure are older than 65 years and heart failure is most prevalent in persons older than 80, the heart failure syndrome commonly develops in the context of other medical and functional problems. Clinicians will be frequently challenged to manage advanced heart failure in the setting of both interrelated illnesses such as diabetes and kidney disease and coexisting conditions such as pulmonary hypertension, cognitive impairment, and frailty. This chapter discusses the ethics and practical aspects of management of advanced heart failure.
Prognostication and Probable Course of Advanced Heart Failure
Young persons (<70 years) with heart failure are generally managed aggressively. In this population, a reduced ejection fraction from familial or ischemic cardiomyopathy predominates. Aggressive titration to maximal doses of beta blockers, medications to block the renin-angiotensin-aldosterone disarray of heart failure, and for some patients, implantation of a biventricular pacemaker for cardiac resynchronization therapy (CRT) will enhance function, improve symptoms from heart failure, and prolong life (see Chapters 25 and 26). Patients with a persistently reduced ejection fraction despite optimized medical therapy will receive an implantable cardioverter-defibrillator (ICD) for prophylaxis against sudden cardiac death.
Some young patients will be markedly ill despite the aforementioned therapies, and some will be eligible for urgent treatment with a left ventricular assist device (LVAD) or cardiac transplantation, if lucky, which will buy them several more years of life with improved function (see Chapters 28 and 29). In these very ill people, heart failure has a significant impact on their lives and those of their families. Patients and their families need support to cope with illness and the threat of life-ending illness. Even successful LVAD therapy or heart transplantation carries significant encumbrances and burdens. The threat of death still remains; LVAD may buy 2 to 8 years, and cardiac transplantation will buy, on average, 15 years before the patient requires additional interventions or dies.
The clinical course and prognosis for patients with advanced heart failure and preserved ejection fraction (HFpEF) are even more difficult to predict than for those with heart failure and reduced ejection fraction (HFrEF) (see Chapter 27). One community-based study of patients hospitalized with heart failure suggested that the prognosis in patients with chronic heart failure is comparable to that in individuals with reduced and preserved ejection fractions.7 However, this has not been a consistent finding inasmuch as another trial of patients with HFpEF found a low rate of heart failure hospitalization or death.8 No data specifically provide information on the course for patients with advanced HFpEF. Web-based heart failure prognostic calculators (EFFECT and Seattle)9,10 do include patients with preserved ejection fractions and thus can provide a general reference. However, how these calculators perform in the real world for patients with advanced HFpEF is not known.
The course for patients older than 75 years with heart failure is dominated by other conditions. Older persons hospitalized with heart failure are more likely to be readmitted to the hospital for an unrelated diagnosis than for heart failure. Cardiac conditions are more commonly the comorbid illnesses for the young old (65 to 75 years), whereas unrelated conditions such as dementia and osteoporosis are more common in those older than 76 years.11 In patients 85 years and older hospitalized with heart failure, having three or more non–cardiac-related comorbid conditions increases the likelihood of death within 6 months.11 The combination of dementia and chronic kidney disease is associated with a median survival of less than 1 year for all heart failure patients older than 65 years.
The progressive decline in functional status in the very elderly may be related more to frailty than to the heart failure per se, and both hospitalization and death are often the result of other processes, such as hip fracture or pneumonia in the very old.12 Frailty, characterized by weakness, fatigue, weight loss, and slow gait speed, is present in a quarter to half of elderly persons with heart failure and is associated with death within 12 years.13 Thus although it coexists with heart failure, frailty alone is not a marker for death in the near future. The pathophysiologic features of the sarcopenia (muscle wasting) of frailty and that of heart failure are equivalent, and both may improve with angiotensin-renin-aldosterone blockade.7,14
Cognitive impairment is present in about half of all persons older than 80 years. Vascular dementia secondary to cerebrovascular disease and cognitive impairment secondary to heart failure further compromise the management of very elderly persons with heart failure. Despite the absence of data specific to advanced heart failure, a diagnosis of dementia was present in 22% to 25% of Medicare beneficiaries with heart failure in one database and was associated with a twofold increase in mortality of nonhospitalized elderly heart failure patients.11 Studies of brain function in patients with HFrEF have demonstrated abnormalities in parts of the brain affecting autonomic function, emotion, memory, and executive function.5 Management strategies for patients with advanced heart failure thus need to integrate plans to assist in medication compliance, dietary sodium management, assessment of volume status, and titration of diuretics.
Communication and Decision Making in Advanced Heart Failure
The mounting options for care of patients with advanced HFrEF in the past decade have increased the complexity of decision making. Many decisions in the care of patients with advanced heart failure rely on both what is medically reasonable for the patient and the patient’s values and goals. Discussions that there are choices at a point in care and that these choices depend on what is important to the patient at this stage in life are usually welcomed by patients and their families. Most patients prefer both to feel as good as possible and to live as long as possible while they feel good, but some will prefer a balance between quality and quantity of life. Thus some patients will decide not to undergo a surgical procedure or device implantation or prefer to not spend time in the hospital, even if they will potentially not live as long without these interventions.
Communication with patients who have advanced heart failure includes acknowledging that death is possible. Clinicians should be prepared to answer patients’ and family members’ questions about prognosis or life expectancy, but it is not necessary to lecture patients about dying or their life expectancy. Ideally, the possibility of death is brought up early in the care of a patient with heart failure. This makes it easier for the patient, family, and physician to cope with dying and sudden death during the course of heart failure.
Physicians sometimes worry that discussions about death may take hope away. A helpful tool is to identify what the patient hopes for and then to also plan for what to do if things do not go as hoped. This “hope for the best but plan for the worst” conversation allows the clinician to set up a dichotomy—hoping along with the patient for the best outcome while simultaneously acknowledging what more realistically may occur, including death.15
Goals for care may change as the patient’s status changes. Many people modify their appraisal of what brings quality to their life and accept more functional limitation over time with a chronic or progressive illness. Thus conditions that a person previously might have deemed unacceptable may become tolerated, and a patient’s preferences can change. The goals of care should be readdressed when there is a change in health status, at the time of hospitalization, and at the time of therapy decision points (such as discussions about ICDs, CRT, LVADs, or transplant listing).
Some patients can clearly articulate their goals, whereas others will not have clarified their goals or priorities. Asking what they hope for in the next year or next several months can help identify concrete goals. Reflecting on what has been important to them as they look back at their life is one way to identify values with patients. It is important for the clinician to have an understanding of patients’ priorities, clarify an approach to care, and then make recommendations for interventions consistent with that approach.
Patient-centered communication between clinicians and patients can follow a basic framework of “ask-tell-ask”:
• Tell the information in small digestible amounts in accordance with their preferences.
• Ask what they understood to check their comprehension and ask “What are your questions?”
Asking about patients’ understanding permits clinicians to target their discussions so that they meet the specific issues of their patients. When there is a significant need for education, other members of the care team can expend the time needed to provide it before moving on to choosing care.
Some patients prefer not to know details or participate in decision making. In this situation it is appropriate to ask patients to identify someone who will speak for them and make decisions on their behalf. In addition to decisions about interventions or approach to care, all patients with advanced heart failure should identify a durable power of attorney for health care or a surrogate who can make care decisions at a time when they are unable to speak for themselves (Table 31-1
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