This issue focuses on the challenge of managing chronic pain. Commentaries present various treatment options, including opioids, nonopioid medications, surgery, and alternative therapies. Authors also address the problems of opioid misuse and abuse and discuss ways to lessen these risks. Original articles examine health professionals’ communication with adolescents about smoking, as well as children's immunization status as verified by practice records and by the North Carolina Immunization Registry.
Pain Management: Lessons from Palliative Care
Palliative care is a relatively new specialty. In the United States, the first hospital-based consultation services started in the 1980s, and the American Board of Medical Specialties recognized palliative medicine as a specialty in 2008.
There is a common misconception that palliative care is reserved for patients with terminal illness. Although palliative care arose from the hospice movement, hospice care is actually a subset of palliative care that focuses specifically on patients with severe illness who are approaching the end of life. In the United States, hospice care is usually offered only when a patient is expected to live less than 6 months. In contrast, palliative care may be appropriate for a wide range of patients. Aside from hospice’s more narrow focus, both hospice care and palliative care share an emphasis on quality of life and on the prevention and relief of suffering.
To give a more concrete sense of what is involved in palliative care, consider the case of a young man, identified as G.T., who was diagnosed at 17 years of age with a rare hematologic condition that resulted in recurrent bouts of pain complicated by ileus and uncontrollable nausea and vomiting. These symptoms required prolonged hospitalizations with administration of parenteral opioids for pain control and provision of parenteral nutrition until the ileus resolved. G.T.’s additional symptoms included itching and depression. After each hospitalization, he would be discharged until the next pain crisis, resulting in recurrent hospitalizations over several years. When G.T. was 24 years old, the hospital’s palliative care team was consulted to assist with pain and symptom management and to provide psychosocial support.
The World Health Organization (WHO) defines palliative care as
an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual .
This definition has a number of corollaries. The first is that palliative care “provides relief from pain and other distressing symptoms” . Indeed, one of the hallmarks of palliative care is its focus on symptoms. In most other specialties of medicine, the patient’s problems are approached by first determining a diagnosis, which then drives a plan for managing care. In contrast, palliative care begins by first dissecting and analyzing each symptom. For example, pain can be broken down into 4 main types: nociceptive, neuropathic, inflammatory, and visceral. Complicated pain syndromes usually involve more than one type of pain.
In G.T.’s case, knowing the diagnosis was useful, but the diagnosis had been known for 7 years before the palliative care team was consulted, and G.T.’s symptoms had continued to severely affect his quality of life. Indeed, there was evidence of involvement of all 4 types of pain. After careful analysis and consideration, the palliative care team decided that G.T.’s pain crises were causing the ileus, nausea, and vomiting. We initiated therapy with methadone, a naturally long-acting opioid with broader receptor activity than other opioids . G.T. needed higher doses of methadone than we had anticipated, but we were committed to doing what was required to control his symptoms and to improve his quality of life.
“Treat to goal” is a key precept of pain management in palliative care. Opioids are not the only medications that can be used to control pain syndromes; appropriate use of adjuvant medications is also essential. Anticonvulsants and tricyclic antidepressants are important for managing neuropathic symptoms, nonsteroidal anti-inflammatory agents (and sometimes corticosteroid medications) are valuable for treating pain that has an inflammatory component, and anticholinergic medications or nitrates may assist with visceral pain. [Editor’s note: For more information on nonopioid pain medications, refer to the commentary by Laguerre on pages 209-214.] In G.T.’s case, antihistamines were vital in controlling the excessive histamine release that could trigger a pain crisis. These drugs also controlled his itching.
Another corollary of the WHO definition of palliative care is that it “affirms life and regards dying as a normal process” . Although it might seem that this issue would be irrelevant in G.T.’s case, the confusion about what palliative care is—and is not—must be addressed in nearly every case. Our palliative care team often must reassure staff members, family members, and patients that we are there not to provide end-of-life care but to improve quality of life.
A further corollary is that palliative care “intends neither to hasten or postpone death” . Although I have been greeted at the nurses’ station with the phrase, “Here comes the death squad,” the truth is that all of palliative care—including hospice care—affirms life, and patients often will improve and “graduate” from hospice care . There is increasing scientific evidence that patients may actually live longer with palliative care and hospice care . Over time, G.T., his family, and members of the staff came to understand that we were not the death squad.
Palliative care also “integrates the psychological and spiritual aspects of patient care” . Dame Cicely Saunders, the founder of the hospice and palliative care movement, developed the concept of total pain—the idea that pain is not just physical but includes psychological, emotional, existential, and social factors in its causes and expression, and that attention to all of these areas is required in order for treatment to be effective . This was certainly true in G.T.’s case. His series of prolonged hospitalizations had taken its toll on the patient, his family, and the staff members who cared for him. There were issues related to depression, anxiety, and social and financial stresses, and there were concerns about addictive behavior. This case required prolonged efforts by the full palliative care team. Fortunately, as adequate pain control was achieved, G.T.’s drug-seeking behaviors vanished, indicating that the behaviors we had been seeing were pseudoaddiction, a condition in which inadequate control of pain causes drug-seeking behavior that mimics addiction .
Two additional corollaries of the WHO definition of palliative care are that it “offers a support system to help patients live as actively as possible until death” and that it “offers a support system to help the family cope during the patient’s illness” . In complex and demanding cases such as those of G.T. and most other palliative care and hospice patients, no single person can provide the depth and breadth of care required. For this reason, palliative care “uses a team approach to address the needs of patients and their families” . Palliative care is always best practiced by a team of doctors, nurses, social workers, chaplains, and other health care providers. Although the physicians and nurse practitioners on our team provide important expertise in symptom management, the social worker and chaplain are vital in building trust, overcoming fears, and addressing the patient’s psychological and spiritual pain and suffering, which go beyond the physiological pain.
Another important corollary is that palliative care “will enhance quality of life, and may also positively influence the course of illness” . The mission of palliative care is to enhance the quality of life for all patients who receive such care. What that means for a specific individual is not always clear, so an essential task in palliative care is determining the goals of care, which involves understanding what is meant by quality of life for a particular patient and his or her family. For one patient, it may mean aggressive surgery and a prolonged stay in the hospital’s intensive care unit. For another patient in a similar situation, it may mean a transition to comfort care and going home with hospice support. In G.T.’s case, our goals were to control his pain, to prevent ileus, to avoid hospitalizations, and to enable him to live as normal a life as possible. To achieve these goals, the palliative care team—in close collaboration with the referring physician—judiciously stabilized G.T.’s condition with methadone therapy and as-needed dosing of hydromorphone for breakthrough pain. At a recent follow-up visit in our palliative care clinic, G.T. reported that he had been able to successfully reduce his methadone dose (as he had requested) and that he had not had a pain crisis or hospitalization in more than 2 years. He was also engaged to be married.
The final corollary of the WHO definition of palliative care is that it “is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life, such as chemotherapy or radiation therapy, and includes those investigations needed to better understand and manage distressing clinical complications” . Some people may not think of palliative care as being appropriate for a patient as young as G.T., but palliative care can be appropriate for anyone with severe illness. Our youngest patients are newborns in the neonatal intensive care unit, and our oldest patient is currently 106 years of age. Although palliative care consultations are typically thought of as occurring in the hospital setting, more and more frequently they also take place in clinic, long-term care, and home settings. In some cancer centers, palliative care consultations are automatically integrated into the care of patients with advanced-stage cancer, beginning with their first visit. Palliative care does not take the place of a primary care medical home and does not diminish the role of the referring physician. As with any other specialty consultation, the palliative care team works to enhance the care of the patient and to assist the attending physician in providing the best and most appropriate care for the patient.
Pain is a complex condition that is extremely common in patients with severe illness. Palliative care integrates all of the components and tools of good pain management—careful assessment, control of side effects and other symptoms, assessment of addiction risk, pain contracts, pill counts, lock boxes, database queries, quantitative urine drug screening, and close follow-up—with a comprehensive team-based approach to maximize the quality of life of the patient and his or her family. Palliative care providers can be valuable allies in caring for patients with pain and other symptoms of severe illness.
Potential conflicts of interest. J.P.L. has no relevant conflicts of interest.
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John P. Langlois, MD associate medical director, CarePartners Hospice and Pallative Medicine; program director, Asheville Hospice and Palliative Medicine Fellowship Program, Asheville, North Carolina.
Address correspondence to Dr. John P. Langlois, Associate Medical Director, CarePartners Hospice and Palliative Medicine, 68 Sweeten Creek Rd, Asheville, NC 28803 (email@example.com).