___________________________________________ Palliative Care and Pain Management at the End of Life
This course is designed to bridge the gap in knowledge of palliative care by providing an overview of the concept of palliative care and associated clinical issues and a discussion of the benefits and barriers to optimum palliative care at the end of life. Central to this discussion is an emphasis on the importance of talking to patients about the value of palliative care, of clearly presenting the prognosis and appropriate treat- ment options and goals, and of ensuring that advance planning is completed. Much of the course focuses on the assessment and management of the most common end-of-life needs, with particular attention to pain, the most prevalent, as well as the most distressing, physical symptom. Psychosocial and spiritual needs of the patient and family are also discussed. Palliative care presents unique challenges for some patient populations, most notably older patients, children/adolescents, and patients receiving critical care. An overview of the most important issues specific to these settings is provided.
INTRODUCTION The concept of palliative care has garnered much attention since the term was first used in the late 1960s to refer to a holistic approach to patient-centered care, with a focus on enhancing the quality of life for patients living with serious illness and their families. As currently practiced, palliative care is interdisciplinary team care designed to engage the expertise of providers from different clinical disciplines. The purpose of palliative care is to alleviate suffering and provide comfort; to this end, the primary goals are relief of pain and other distressing symptoms, effective communication with the patient and family in order to establish patient-centered goals of care, attentiveness to psychological and spiritual needs, and support for family members. With its roots in hospice care, the term “palliative care” has long been used interchangeably with “end-of-life care.” However, in contrast to hospice, the initiation of palliative care is not contingent upon the expecta- tion that the patient has less than six months to live or that disease-directed therapy has run its course. Across all special- ties, the emphasis now is on the integration of palliative care into the ongoing management strategy for any patient with a serious, life-threatening illness, regardless of age. Hospice care is palliative care provided in the last weeks and months of life, when disease-directed or curative treatment has been exhausted or deemed no longer to be of benefit [1]. Palliative care at the end of life is delivered most effectively through hospice. Palliative care/hospice was once primarily confined to the cancer setting because of the evident and often rapid health decline to death with this disease. Hospice extended to the acquired immunodeficiency syndrome (AIDS) setting for the same reason. Ongoing advances in medicine have changed these once-lethal diseases into chronic condi- tions, shifting the trajectory of illness and leaving a growing number of patients in need of palliative care for longer periods of time. Similarly, individuals with other life-limiting diseases, such as heart failure, chronic obstructive pulmonary disease (COPD), end-stage renal disease, and dementia, are in need of similar care. Thus, a growing number of individuals could benefit from palliative care. However, palliative/hospice care is underutilized in the United States for a variety of reasons, and many patients experience an unnecessary degree of physical and psychological suffering at the end of life [1; 2]. Both clinician- and patient-related factors contribute to the underuse of palliative/hospice care. In addition, evidence- based guidelines are lacking for end-of-life care for many noncancer life-threatening conditions. More research on the prevalence and severity of symptoms and functional status in patients with life-limiting diseases, as well as the efficacy of interventions is needed to generate these much-needed guidelines.
CONCEPT OF PALLIATIVE CARE
EVOLVING DEFINITION OF PALLIATIVE CARE The term “palliative care” was first used by Balfour Mount, a Canada-trained physician and visiting professor at St. Chris- topher’s Hospice, the first program of its kind. Dr. Mount subsequently established a palliative care program at Royal Victoria Hospital in Montreal, the first such program to be integrated in an academic teaching hospital [3]. Since that time, many attempts have been made to craft a definition of palliative care that represents its unique focus and goals. The challenge in defining palliative care has been encompassing all that such care refers to while specifying the timing of it ( Table 1 ) [4; 5; 6; 7; 8]. The timing of palliative care remains an important point of discussion. As a result of its roots in hospice care, the term “palliative care” has often been considered to be synonymous with “end-of-life care.” However, the current emphasis is to integrate palliative care earlier in the overall continuum of care ( Figure 1 ) [6; 9]. As the definition of palliative care has evolved, end-of-life care has become one aspect of palliative care. The time period assigned to “end of life” has not been defined, with the phrase being used to describe an individual’s last months, weeks, days, or hours [10; 11]. Designating a specific time period as the “end of life” is further challenged by disease trajectories that differ depending on the underlying life-limiting disease, a problem discussed in detail later in this course. EFFORTS TO ENHANCE PALLIATIVE CARE AT THE END OF LIFE Since the establishment of the first hospice in the United States in 1974, many initiatives have been undertaken to enhance the quality of care given at the end of life. The lack of progress in relieving end-of-life suffering was highlighted with the publica- tion of findings from the Study to Understand Prognoses and
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MDCA1525
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