Palliative Care Medicine in Patients with Advanced Gastrointestinal and Hepatic Disease

What is palliative medicine?

Palliative care is interdisciplinary care that aims to improve the quality of life (QOL) of seriously ill patients and their families through the prevention and relief of suffering ( Box 132.1 ). Integral to this care is the early identification, impeccable assessment, and treatment of pain and other symptoms, including the physical, psychosocial, and spiritual needs of the patient. Early incorporation of palliative care, concurrent with disease-directed treatments, enables patients and their families to have the best chance of maintaining their QOL for the longest possible time. In contrast to palliative care, hospice care is care provided to patients with an anticipated lifespan of 6 months or less. Hospice care is not provided in conjunction with disease-directed treatments that are specifically intended to prolong life.

Hospice versus Palliative Care

Hospice care recognizes that dying is a normal life cycle event and seeks to neither unnecessarily hasten nor postpone death, but rather to focus care on patient-defined goals as death nears. Most patients want to die with comfort and dignity and are able to articulate some or all of the following goals prior to death : freedom from pain and other distressing symptoms; having a sense of personal control over end-of-life decisions; avoiding inappropriate prolongation of the dying process; finding meaning and purpose in life; and saying goodbye to friends and family.

Hospice care in the USA is also a financial reimbursement system for 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 (1) the physician certifies that the patient has 6 months or less to live, if the disease follows its usual course; and (2) the goal of treatment is palliative rather than curative. It is to be noted that MHB does not require patients to relinquish heroic life-prolonging measures, future hospitalizations, or participation in research. Also, prognosis is based on the attending physician’s clinical judgment regarding the normal course of the individual’s illness; if the patient lives beyond the expected 6 months, hospice care can 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 USA 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 defined reimbursement mechanism. Palliative care is reimbursed similarly to other subspecialty care through Medicare, Medicaid, and other private and public insurance mechanisms. The palliative care movement in the USA has developed largely in acute care hospitals and, more recently, in long-term care facilities and through outpatient clinics. All hospice care is palliative care, but not all palliative care is hospice care. To truly provide seamless care for patients who are dying, communities need both upstream palliative care provided concurrently with disease-directed therapies and end-of-life care through hospice services.

Quality care near the end of life for complex physical and psychologic problems cannot be provided by a single clinician. ^, Care is ideally provided by an interdisciplinary team that includes physicians, nurses, social workers, chaplains, and bereavement counselors. It is to be noted that the interdisciplinary palliative care team works in concert with, and does not seek to replace, the primary medical team. Thus, the ultimate goal of palliative care is to prevent and relieve suffering and to optimize QOL for patients and their families, regardless of the stage of the disease or the need for curative or palliative therapies.

Exploring 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 both the clinician and the patient achieve clearly articulated goals; this is best accomplished through a meeting with the patient and family or surrogate decision-maker ( Boxes 132.2 and 132.3 ). Prior to a goal-setting meeting, the clinician should review the disease course, the patient’s response to prior treatments, and the potential for further disease-modifying treatments and then 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 following question: Does the treatment intervention match or assist with the patient ’ s treatment goals? 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, is generally preferred to a paternalistic approach or, at the opposite extreme, to one in which options are presented with no guidance.

Prognostication

Physicians’ estimates of patient survival, or prognosis, are important to patients and families in all phases of a patient’s life because it informs 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 prognosis, prognostication remains an elusive clinical art. Numerous empiric studies have revealed a consistent optimistic bias, with most physicians overestimating anticipated lifespan by a factor of 3; such estimates are further skewed when the physician is 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 2 key tasks in prognosticating:

• 1.

  Formulating the prognosis by review of patient-specific medical factors and disease-specific actuarial estimation of survival.

• 2.

  Communicating the prognosis to patients and families and providing ongoing support.

Given that prognostication is challenging, many physicians are uncomfortable with this task and may avoid providing realistic prognostic information or continue to offer ineffective and burdensome treatment options, which may instill false hope and promote unrealistic expectations on the part of the patients and families. When pressed by patients, physicians typically overestimate survival. Furthermore, if the imminence of death is not discussed honestly, patients will be more likely to accept costly, burdensome, and futile treatments.

Discussing prognosis with patients and families is a key skill that is instrumental in helping seriously ill patients make health decisions that reflect their goals and values (see Boxes 132.2 and 132.3 ). Physicians are advised to start by asking the patient 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 they do wish to discuss prognostic information, a broad estimate should be provided, for example, a few days to a few weeks or a few weeks to a few months , rather than, Mr. Jones, you have only 3 weeks to live. Once the time frame is presented, important future goals can be determined by asking, What do you want/need to do in the time that is left ? (e.g., important events and saying goodbye to loved ones). This allows the clinician to “aim” the information at the level of the patient and family.

Prognostication guidelines are well established for cancer. ^, The single best prognostic variable in cancer is performance status. ^, For example, patients with a Karnofsky Performance Status of 40 (disabled; require special care and assistance) live on average less than 50 days, and patients with a Karnofsky Performance Status of 20 live an average of only 10 to 20 days ( Table 132.1 ). Put another way, patients who are spending more than 50% of the day resting or in bed generally have a prognosis of 3 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.

Prognostic criteria for noncancer diagnoses have been published and are especially useful to help physicians know when to refer patients for hospice services. Specific to gastroenterology, for example, general criteria have been established for chronic liver disease ( Box 132.4 ). 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 6 months?” ^,

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

Key prognostic variables and tools in Gastrointestinal and Liver Disease

In some instances, primary GI disease processes account for a patient’s clinical deterioration. In these cases, prognostication may prove difficult because most GI diseases do not have formal tools to guide prognostication. Chronic liver disease is an exception because it is a progressive morbid condition and can be treated by liver transplantation, which requires careful allocation of a limited supply of available organs. Prognostication tools have been developed to help predict survival in order to prioritize liver transplantation. Patients who have compensated cirrhosis have a median survival of 6 to 12 years. Decompensation occurs in 5% to 7% annually; median survival then declines to 2 years. The MELD score was developed to prioritize patients for liver transplantation and also can be used to help guide the appropriate palliative care for patients with chronic liver disease. In addition, several other syndromes associated with either end-stage liver disease (ESLD) or GI malignancies have been evaluated for their correlation with patient survival.