The Role of Palliative Care at the End of Life
Robin B Rome, MSN, FNP-C, Hillary H Luminais, RN, Deborah A. Bourgeois, MN, APRN, ACNS-BC, and Christopher M Blais, MD, MPH, FACP, FAAHPM
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The goal of palliative care is to relieve the suffering of patients and their families by the comprehensive assessment and treatment of physical, psychosocial, and spiritual symptoms experienced by patients. As death approaches, a patient’s symptoms may require more aggressive palliation. As comfort measures intensify, so should the support provided to the dying patient’s family. After the patient’s death, palliative care focuses primarily on bereavement and support of the family.
Keywords: End of life, palliative care, symptom management
While dying is a normal part of life, death is often treated as an illness. As a consequence, many people die in hospitals, alone and in pain.1 Palliative care focuses primarily on anticipating, preventing, diagnosing, and treating symptoms experienced by patients with a serious or life-threatening illness and helping patients and their families make medically important decisions. The ultimate goal of palliative care is to improve quality of life for both the patient and the family, regardless of diagnosis. Although palliative care, unlike hospice care, does not depend on prognosis, as the end of life approaches, the role of palliative care intensifies and focuses on aggressive symptom management and psychosocial support.
Helping patients and their families understand the nature of illness and prognosis is a crucial aspect of palliative care near the end of life. Additionally, palliative care specialists help patients and their families to determine appropriate medical care and to align the patient’s care goals with those of the healthcare team. Finally, establishing the need for a medical proxy, advance directives, and resuscitation status is an integral part of palliative care at the end of life.
MODELS OF CARE
The traditional medical treatment model has become dichotomous, leading physicians to provide curative or aggressive treatment initially and to initiate comfort care only when other measures have failed. Palliative medicine establishes goals to relieve suffering in all stages of the disease and is not limited to comfort care or end-of-life care (Figure2).3
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Models of healthcare delivery. (Reproduced with permission from the National Consensus Project for Quality Palliative Care. Clinical Practice Guidelines for Quality Palliative Care. 2008.)2
The terms palliative care and hospice care are sometimes used interchangeably. According to the National Quality Forum, hospice care is a service delivery system that provides palliative care/medicine when life expectancy is 6 months or less and when curative or life-prolonging therapy is no longer indicated.4 Therefore, it is important to distinguish that although hospice provides palliative care, palliative care is not hospice. Not all available therapeutic palliative care modalities are provided within the hospice service delivery system.
THE CONCEPT OF TOTAL PAIN
The alleviation of suffering is an essential goal of medical care. To treat it, however, providers must first recognize pain and suffering.5 Saunders first described the concept of total pain (Table 1)6 and interaction among the various sources of pain and suffering.7 Total pain is the sum of the patient’s physical, psychological, social, and spiritual pain. This concept is central to the assessment and diagnosis of pain and suffering.