Palliative Care and Pain Management at the End of Life ___________________________________________
In discussing prognosis, clinicians tend to be overly optimistic, and, although most clinicians believe that they should be truth- ful, they sometimes withhold the truth, often at the request of a family member [160]. Honesty about the prognosis, with acknowledgment of inherent uncertainty, is needed because patients who are aware of their prognosis are more likely to choose hospice rather than aggressive treatment and to carry out advance directives [31; 81; 171]. Conversely, patients who are not fully aware of their prognosis tend to overestimate their life expectancy, which can influence decision making about treatment options [129]. As with other end-of-life issues, the prognosis should be discussed when the clinician would not be surprised if the patient died within six months to one year [6; 117; 148]. For patients with cancer, it is recommended that the prognosis be discussed within one month after a new diagnosis of advanced cancer is made [161]. A guideline from the Renal Physicians Association notes that prognosis should be fully discussed with all patients who have stage 4 or 5 chronic kidney disease or end-stage renal disease [121]. A discussion about prognosis is also recommended before the initiation of such treatments as implantation of a left ventricular assist device, dialysis, and ventilator support [122; 150; 172; 173; 174]. Clinicians should carefully prepare for the discussion of prognosis by reviewing the patient’s medical record and talk- ing to other healthcare professionals involved in the care of the patient [117]. Because there is variation among patients with regard to their desire for information, clinicians should follow the “ask-tell-ask” approach: ask the patient if he or she is willing to discuss prognosis; if yes, discuss the prognosis and then ask the patient to confirm his or her understanding [62; 164]. When discussing prognosis, quantitative estimates are more understandable for patients and family than qualitative ones (such as “poor”), and general timeframes for survival should be given [62; 81; 164; 175]. In addition, clinicians should emphasize that prognosis is determined by looking at large groups of patients and that it is harder to predict survival for an individual [62; 121; 129; 161]. The discussion of prognosis is often not documented in the patient’s record but should be [117]. Discussing Treatment Options and Goals Treatment options and goals of care are other topics that are often avoided in the end-of-life setting. A discussion of the survival benefit of palliative chemotherapy is frequently vague or absent from discussions of treatment options for patients with cancer [176]. In another example, approximately 60% to 95% of physicians involved with the care of patients with heart failure have two or fewer conversations about deactivation of implantable cardioverter defibrillators, and the discussions are usually within the last few days of life [89; 177]. Deciding when curative therapy should end is difficult because of the advances made in treatment and life-prolonging tech- nology and the unpredictable course of disease, especially for
organ-failure diseases. These factors have led many patients, as well as some clinicians, to have unrealistic expectations for survival [30; 178]. Unrealistic expectations are a major contributor to an increased use of aggressive treatment at the end of life. Among more than 900 patients with cancer, those who thought they would live for at least six months were more likely to choose curative therapy than “comfort care” compared with patients who thought there was at least a 10% chance they would not survive for six months [179]. Many studies have demonstrated high rates of aggressive treat- ment within the last months to weeks of life, with increased rates of hospital admissions, stays in an intensive care unit, use of medical resources, and use of chemotherapy. Goodman et al. found that patients with severe chronic disease near the end of life spent a disproportionate number of days in an intensive care unit and received care from multiple physicians; more than half of the patients saw 10 or more physicians within the last six months of life [55]. Similarly, Sheffield et al. found high rates of admission to the intensive care unit among nearly 23,000 patients with pancreatic cancer, and Unroe et al. found that 80% of more than 229,000 people with heart failure were hospitalized in the last six months of life [180; 181]. In the cancer setting, several researchers have reported increased rates of chemotherapy in the last two to four weeks of life [180; 182; 183]. However, studies to evaluate the benefit of high-intensity treatment near the end of life have consistently found that such treatment offers no survival benefit, decreases the quality of life, and delays the use of hospice [55; 80; 184; 185]. Before discussing treatment options, the clinician should talk to the patient to gauge his or her level of understanding of the disease and prognosis and to explore the quality-of-life factors that are most important [186]. The clinician should frame the conversation to focus on active interventions rather than the end of curative therapy; should focus on the overall care goals; and should discuss options within the context of these goals (that is, does the patient wish to enroll in hospice, enroll in a phase I trial, or be present at a family event?) [81; 117]. The discussion should include an explanation of the likelihood of achieving the patient’s goals with each option and a compari- son of the risks, benefits, and costs of each option, noting the overall lack of benefit of aggressive treatment [187; 188]. It is also important to allow the patient and family enough time to express emotion and concerns and to ask questions [117; 164; 189]. Because frequent exacerbations in organ-failure diseases are usually predictive of a more rapid decline, hospi- talizations for disease exacerbation should prompt discussions about changes in prognosis and treatment goals and advance care planning [101; 190; 191]. Admission to the hospital or intensive care unit should also prompt a discussion of goals and preferences with patients with cancer; this conversation should be documented within 48 hours after admission [161]. The ACCP recommends a discussion of the pros and cons of life-sustaining treatment when caring for patients with advanced lung cancer [54].
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MDCA1525
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