Palliative Care and Pain Management at the End of Life ___________________________________________
tive care across disease settings, researchers began to document the prevalence of symptoms among groups of patients as well as compare the prevalence and severity of symptoms with those found among patients with cancer. Studies have documented that the symptom burden at the end of life for patients with life-limiting diseases is often as high as—or higher than—that for patients with cancer, and the most common symptoms are similar across disease settings ( Table 7 ) [122; 201; 207; 208; 209; 210; 211]. In the wake of such studies, the American College of Physi- cians published a clinical practice guideline on palliative care interventions for three symptoms with the overall strongest evidence—pain, dyspnea, and depression—and evidence-based guidelines and recommendations for palliative care have been developed for respiratory diseases, heart failure, and end-stage renal disease [47; 108; 121; 122; 212; 213; 214]. These guide- lines represent an important step toward enhancing palliative care, but more work is needed in many disease settings to address all aspects of palliative care. For one, definitions in palliative and supportive care are not standardized and remain a significant barrier to improvement [215]. PHYSICAL CARE Among patients with life-limiting illness who receive palliative care consultation, physical symptoms are cited as causing the greatest distress [216]. Patients usually have multiple symp- toms, and a mean of nine to 11 symptoms per patient has been reported [207; 208; 209; 217]. The presence of multiple symptoms can create challenges in identifying causes, as many symptoms are intricately linked with others, including symp- toms in the psychosocial domain. Several tools have been developed to assess factors in the end-of-life experience, including five tools to evaluate physi- cal symptoms (three of which are used to assess pain), four to assess quality of life, and six to assess functional status [218]. However, a systematic review of 99 tools in these three domains plus six others (emotional and cognitive symptoms, advance care planning, continuity of care, spirituality, grief and bereavement, satisfaction and quality of care, and caregiver well-being) showed that data on the reliability and validity were lacking for most of the tools [219]. Assessment of symptoms should include comprehensive documentation of the patient’s history and findings on physical examination and should be carried out at regular intervals [6]. To help ensure that patients’ physical distress is alleviated, when clinicians ask patients about the presence and severity of symptoms, they should also ask which symptom is most troublesome, as patients do not often specifically state this [220]. Although asking open-ended questions about symptoms is helpful, systematic assessment of symptoms is also necessary. A study of patients in a palliative medicine program demon- strated that significantly more symptoms were identified on systematic assessment than through open-ended questioning
MOST COMMON SYMPTOMS AT THE END OF LIFE ACROSS LIFE-LIMITING DISEASE SETTINGS Overall Fatigue Pain
Dyspnea Delirium Anorexia
Cancer
Pain Fatigue Anorexia Anxiety Depression
Heart failure
Dyspnea Fatigue Pain Anxiety Sleep disturbances
COPD
Dyspnea Fatigue Xerostomia Coughing Anxiety
Renal disease
Fatigue Sleep disturbances Pain Anxiety Constipation Depression Sleep disturbances Fatigue Muscle cramps Cachexia
End-stage liver disease
HIV/AIDS Diarrhea Fatigue Depression Pain Delirium Source: [122; 201; 207; 208; 209; 210; 211]
Table 7
(2,075 symptoms compared with 325) [221]. The symptoms that went unreported were not inconsequential; of those symptoms not initially volunteered by the patient, 69% were rated as “severe” and 79% were described as “distressing” [221]. Studies have demonstrated that patients are often reluctant to report worsening symptoms because of fear that they indicate progressive disease. Clinicians should describe potential symptoms to help patients and family understand which symptoms can be expected and when it is appropriate to notify a member of the healthcare team. It is important for the healthcare team to acknowledge the patient’s symptoms as real and to take prompt actions to relieve them adequately. The patient’s comfort should take precedence over the exact cause of the symptom. Diagnostic studies to determine the cause of symptoms should be undertaken only if the results
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MDCA1525
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