Prognostication of illness is an important part of helping health care providers in guiding treatment. Yet, the ability of health care professionals to provide this information is extremely difficult and often erroneous (1). The progression of illness has been well studied and broadly characterized by four “trajectories of an illness.” These trajectories have been characterized in functional graphs, with each of the four trajectories having the following unique properties: baseline commencement, shape, and duration (2, 3). Therefore, death can occur in the following ways:

Cancer’s relatively predictable functional decline can often be anticipated by the patient and the family and is well known in the hospice environment. Sudden death is by its nature unanticipated, with little opportunity for planning or anticipatory grieving. However, the family does not undergo prolonged periods of functional decline and issues brought by intermittent health crises that are common in chronic illness. In chronic illness, the gradual functional decline can be interrupted by sudden, precipitous downturns, from which the patient commonly recovers to a new and lower functional baseline. These peaks and valleys are often unpredictable and can be extremely frightening for the patient and family. This course will often end unexpectedly with a fatal event occurring during one of these valleys. The fourth and final characterization of the illness trajectory begins with a low functional level that inexorably declines to death. The function in this type of degenerative illness is chronically at a low baseline level, never recovering significantly to an improved baseline. Patients or families often endure significant suffering as functional declines dictate difficult health care decisions. The emphasis of this chapter will be on diseases that fall into the latter two categories, namely, those characterizing chronic and neurodegenerative illnesses. Chronic disease has become a growing problem in our society as treatment options expand and people survive longer with serious illness. Many of these illnesses are chronic and debilitating. Stroke is the number three killer in the United States, with an incidence of more than 700,000 strokes per year, making stroke the leading cause of debilitating disease in the United States (7). Cardiovascular disease accounts for 1 in 2.6 deaths in the United States (7). Together, these diseases account for most hospitalizations in the United States (7). The economic burden is also overwhelming to society (7). The incurability of many of these illnesses makes recovery from the diseases very unlikely. In fact, the “trajectory of illness” for these illnesses demonstrates that patients have a slow decline with little or no overall improvement before the fatal event.

Health care providers try to accurately predict the course of these illnesses. Prognostication is an important tool used by health care providers. It helps provide information for families and patients on the likely course of illness and guidance in establishing reasonable goals of care. The establishment of a likely course of the illness and goals of care facilitates informed decision making about potential treatments and interventions. In addition, good prognostication can help guide the critically important process of determining hospice appropriateness and eligibility. The decision to pursue hospice can benefit not only the patient but also society. Patients with chronic illnesses, as mentioned previously, are faced with repeated decisions regarding hospitalizations and treatments that fail to improve function or meaningfully impact medical outcomes. Prognostication and appropriate medical decision making can help alleviate the societal and personal burdens resulting from futile medical treatments.

Yet, health care providers should use caution when evaluating data that is available from several different studies (8) (Table 43.1). The limitations of these predictions are factors that hinder a provider’s ability to determine the appropriate counsel and therapy at any given point in the illness. Regardless of the setting or illness, these clinical predictions are not uniformly effective (1, 9, 10). In addition, health care workers often give more optimistic predictions than warranted by the data (11). But there are several prognostic tools that can help in patient evaluations: the Karnofsky Performance Status Scale (KPS) (12, 13). (Table 43.2), the New York Heart Association (NYHA) Functional Classification (14), the Functional Assessment Staging (FAST) scale (which can be used for a variety of symptoms) (15), and the index of activities of daily living (ADL) (16). For noncancerous illnesses, the best prognostic factors tend to be either disease-specific factors

such as arterial blood gas levels and left-ventricular function in congestive heart failure (CHF) or global functional indicators (6-minute walk test or quality of life indicators) (17, 18). The Medicare/Medicaid Hospice Benefit provides both general and disease-specific guidelines for patients who are referred to hospice. The Medical Guidelines for Determining Prognosis in Selected Non-Cancer Disease (19) is organized to provide general, functional indicators to assist in the assessment for hospice eligibility, coupled with specific, disease-specific guidelines that apply to particular diseases. Excerpts from these guidelines will be shared throughout this chapter to detail some important considerations in evaluating the needs and hospice appropriateness of specific conditions. It should be noted that these are not rules but rather guidelines to assist the health care provider in determining hospice eligibility. General guidelines are listed in Table 43.3.

In palliative medicine, prognosis is mainly used to guide decision making and to facilitate preparation for anticipated changes. It is also common in palliative care to give estimates in term of life events that the patient may be anticipating, that is, birthday, graduation, wedding, and so on. When answering such questions, health care providers should answer questions directly and honestly, be open about areas of uncertainty, and offer answers of hope. In cases where these goals seem to conflict with each other, the artistic practitioner openly communicates accurate information while continuing to support hope within the patient or the family. It is also important to emphasize that patients can sometimes postpone death until after an important anticipated event (such as a wedding or holiday) (24).