WHAT IS PALLIATIVE MEDICINE?

Palliative care is interdisciplinary care that aims to improve the quality of life of patients and their families facing the problems associated with life-threatening illness through preventing and relieving suffering by identifying, assessing, and treating pain and other problems, including physical, psychosocial, and spiritual ones.¹ Although palliative care often is provided to patients with life-threatening illness that is not responsive to curative treatment,² it can and should be offered concurrently with all other appropriate medical therapies including cure-oriented treatments.

Palliative medicine recognizes that dying is a normal life cycle event and seeks neither to unnecessarily hasten nor postpone death, but rather to focus care on patient-defined goals as death nears.² Most patients want to die with comfort and dignity and are able to articulate some or all of the following goals³:

Quality care near the end of life for complex physical and psychological problems cannot be provided by a single clinician. Care ideally is provided by an interdisciplinary team that includes physicians, nurses, social workers, chaplains, and bereavement counselors. The interdisciplinary palliative care team works in concert with, and does not replace, the primary medical team. Thus, the ultimate goal of palliative care is to prevent and relieve suffering and to optimize quality of life for patients and their families, regardless of the stage of the disease or the need for curative or palliative therapies. The American Academy of Hospice and Palliative Medicine provides a list of palliative medicine and hospice physicians on their website (www.aahpm.org).

HOSPICE VERSUS PALLIATIVE CARE

Palliative medicine and hospice care share the same philosophy of care. Unlike palliative medicine, however, hospice care in the United States is also a financial reimbursement system for the terminally ill patients, largely defined by the Medicare Hospice Benefit (MHB). As such, hospice care has defined regulations and admission criteria. Under the MHB, patients are eligible for a specific set of services if the physician certifies that the patient has six months or less to live, if the disease follows its usual course, and if the goal of treatment is palliative rather than curative.⁴ MHB does not require patients to relinquish heroic life-prolonging measures, future hospitalizations, or participation in research. Prognosis is based on the attending physician’s clinical judgment regarding the normal course of the person’s illness; if the patient lives beyond the expected six months, the hospice care may be continued by recertifying the patient under MHB. Although hospice care can be provided in special residential facilities or in long-term care facilities, currently most hospice care in the United States is provided in the patient’s home.

In contrast to hospice care, there are no specific eligibility criteria for palliative care because there is no specially defined reimbursement mechanism. The palliative care movement in the United States has developed largely in acute care hospitals and, more recently, in long-term care facilities. Therefore, all hospice care is palliative care, but not all palliative care is hospice care (Table 126-1). To truly provide seamless care of patients who are dying, communities need both palliative care and hospice services. There are 65 Hospice and Palliative Medicine fellowship programs in the country, and board certification is available through the American Board of Medical Specialties for the subspecialty of hospice and palliative medicine.⁵

Table 126-1 What Is Palliative Care?

Adapted from World Health Organization, 2008.

EXPLORING THE GOALS OF CARE

Exploring patient-defined goals of care is the first step in determining the most appropriate therapeutic interventions for a specific disease or symptom. An organized approach to goal setting can help the clinician and patient achieve clearly articulated goals. Goal setting is best accomplished through meeting with the patient and family or surrogate decision-maker (Table 126-2). Before a goal-setting meeting, the clinician should review the disease course, response to prior treatments, and potential for further disease-modifying treatments and develop a realistic short- and long-term vision for the future clinical course, including a general sense of prognosis. With this in mind, the clinician can begin to review treatment options and help the patient decide which treatments are most likely to help meet his or her specific goals. All therapeutic options should be examined in light of the question, “Does the intervention match or assist with the patient’s treatment goals?”⁶ As the burden of decision-making increases near the end of life, it is important for physicians to understand their central role in helping patients make decisions. A model of shared decision-making, in which the physician provides guidance and recommendations, generally is preferred to a paternalistic approach, or, at the opposite extreme, to one in which options are presented with no guidance.⁷

Table 126-2 Process Steps for a Goal-Setting Family Meeting

* Laws governing surrogate decision-making vary from state to state.

Adapted from Weissman DE, Ambuel B. Establishing treatment goals, withdrawing treatments. In: Weissman DE, Ambuel B, Hallenback J, editors. Improving End-of-Life Care. 3rd ed. Milwaukee: Medical College of Wisconsin; 2000. p 101.

PROGNOSTICATION

Physicians’ estimates of patient survival are important to physicians as well as to patients and families in all phases of a patient’s life because they influence both medical and nonmedical decisions. This is especially true at the end of life when patients and families have to make numerous personal, fiscal, and social arrangements in anticipation of impending death.

Despite the great need for accurate prognoses, prognostication remains an elusive clinical art. Numerous empirical studies have revealed a consistent optimistic bias,⁸ with most physicians overestimating anticipated life span by a factor of three. Physicians’ prognostic radars are further skewed when they are more connected with the patient. Consequently, patients who are in great need of quality palliative care are referred too late to palliative care services and thus are deprived of access to good symptom management.

There are two key tasks in prognosticating: 1) formulating the prognosis by reviewing patient-specific medical factors and disease-specific actuarial estimation of survival; and 2) communicating the prognosis to patients and families while providing ongoing support.

Given that prognostication is challenging, many physicians are uncomfortable with this task and often avoid providing realistic prognostic information, or they continue to offer futile treatment options that can convey false hope and unrealistic expectations to patients and families. When pressed by patients, physicians then typically overestimate survival. If the imminence of death is not discussed honestly, patients might be more likely to accept costly, burdensome, and futile treatments.⁹

Prognostication guidelines are well established for cancer.^10,11 The single best prognostic variable in cancer is performance status.^10,11 For example, patients with a Karnofsky Performance Status (KPS) of 40 (disabled; requires special care and assistance) live on average less than 50 days; and patients with a KPS of 20 live an average of only 10 to 20 days (Table 126-3).¹⁰ Put another way, patients who are spending more than 50% of the day resting or in bed generally have a prognosis of three months or less. Specific symptoms provide further information: symptoms with an independent predictive value for a poor prognosis are shortness of breath, anorexia, difficulty swallowing, and weight loss.¹⁰

Table 126-3 Karnofsky Performance Scale

From Karnofsky, DA, Burchenal, JH. The clinical evaluation of chemotherapeutic agents in cancer. In: MacLeod CM, editor. Evaluation of Chemotherapeutic Agents. New York: Columbia University Press; 1949. p 196.

Prognostic criteria for noncancer diagnoses have been published and are especially useful to help physicians know when to refer patients for hospice services.¹² Specific to gastroenterology, for example, general criteria have been established for chronic liver disease (Table 126-4). Beyond guidelines, some clinicians have advocated a simple test to determine when hospice services are appropriate by asking, “Would I be surprised if this patient died in the next six months?”^13,14

Table 126-4 Hospice Eligibility Criteria for End-Stage Liver Disease

BUN, blood urea nitrogen; HBsAg, hepatitis B surface antigen; INR, international normalized ratio.

Adapted from Standards and Accreditation Committee. Medical Guidelines for Determining Prognosis in Selected Noncancer Diseases. 2nd ed. Arlington, Va: National Hospice Organization; 1996.

No matter what type of cancer or noncancer fatal illness a person has, a “common final clinical pathway” occurs in most patients.¹⁰ Signs and symptoms that predict a prognosis of hours to days are decreased or fluctuating levels of consciousness, a precipitous clinical decline, decreased oral intake, and inability to turn over in bed.¹¹ Patients close to death typically exhibit periods of apnea, retained oropharyngeal secretions (the death rattle), fever, and cool or mottled extremities.¹¹

Discussing prognosis with patients and families is a key skill in palliative care. Physicians are advised to start by asking patients if they previously have been given prognostic information, if they have a sense of how much time is left, and whether they would like to discuss prognosis. If a patient indicates that he or she wishes to discuss prognostic information, provide a broad estimate, a few days to a few weeks or a few weeks to a few months, rather than, “Mr. Jones, you have only three weeks to live.”⁴ Once the time frame is presented, important future goals can be determined by asking, “What do you want or need to do in the time that is left?” (e.g., important events, saying goodbye to loved ones). This allows the clinician to aim the information at the level of the patient and family.¹¹

KEY PROGNOSTIC VARIABLES AND TOOLS IN LIVER DISEASE