Defining Palliative Care
To many doctors, palliative care has a simple definition: treating the symptoms of serious illness, but not trying to cure it. But for a medical specialty still relatively new to health providers, the line between palliative care and hospice care are oftentimes blurred. It’s a trend that has led many doctors to perhaps not recommend palliative care to their patients at the appropriate time, an oversight that could have a negative impact on patient quality of life (QoL).
“The problem is some people simply don’t understand what palliative care is,” said Mary Lynn McPherson, PharmD, MA, BCPS, CPE, professor and executive director for advanced postgraduate education in palliative care for the University of Maryland’s School of Pharmacy in Baltimore, Maryland.
“Palliative care is a medical specialty that clearly focuses on maximizing the quality of life of seriously ill patients and their families,” she explained. However, doctors may feel palliative care is not necessary until the patient has no hope of finding a cure. Likewise, patients may see palliative care professionals as working against their desires to seek a cure for the serious illness.
Dr. McPherson, who works as a consultant pharmacist in both hospice and palliative care programs, described a scenario where a patient she was treating for chronic obstructive pulmonary disease (COPD)-related pain told her he had been diagnosed with lung cancer. When Dr. McPherson tried to discuss the pros and cons of pursuing the aggressive chemotherapy course recommended to him by his doctor, the patient became defensive and even stopped seeking her care from that moment on.
“It’s always a difficult conversation. People don’t want to hear it, they don’t want to confront their own mortality,” said Dr. McPherson. But even though palliative care is not concerned with curing patients, it is very much concerned with helping them. Especially with a serious illness like cancer or cardiovascular disease, optimum symptom management, family counseling, and psychological support can be essential to ensuring patients receive the care they need. [See The Challenges of Treating Young Patients With a Terminal Prognosis.]
When Should Palliative Care Be Accessed?
The term “serious illness” is important to palliative care professionals. For years, doctors have defined palliative care as a form of care for patients with “advanced illness.” This has furthered the stigma that palliative care is only reserved for patients who are “at the point of no return,” which is untrue, Dr. McPherson explained.
But it’s these subtleties of language that have pigeonholed palliative medicine with hospice medicine, a grave error considering professional guidelines now recommend patients receive palliative care at the moment they are diagnosed with serious illness.
Just this spring, the American Society of Clinical Oncology (ASCO) released an updated guideline on treating patients with unresectable pancreatic cancer.1 The guidelines state a strong recommendation that practitioners must establish the goals of care with patients during initial workup, which should include the incorporation of palliative care, especially for patients suffering from pain and other symptoms.1
“Patients with pancreatic cancer should really have access to palliative care right at the start of treatment, if feasible,” said Alok Khorana, MD, FACP, professor of medicine at the Cleveland Clinic Lerner College of Medicine at the University of Cleveland in Ohio. Dr. Khorana, who served as chair of the ASCO’s Clinical Practice Guidelines Committee, helped author the ASCO’s recent guideline on pancreatic cancer management.1
“Patients have significant symptom burden, and palliative medicine can definitely play a role in reducing this burden with early partnership with oncology,” Dr. Khorana told Practical Pain Management.
The need to establish “a multidisciplinary team environment” around patients receiving treatments for serious illness has become a more relevant concern in the management of serious illness, noted ASCO.1 Especially in the context of pain management, where pain itself has evolved as a biopsychosocial disorder, the necessity for trained palliative professionals to be incorporated right at the point of diagnosis has become a significant factor in patient outcomes, regardless of whether curative treatments are being employed, said Dr. McPherson. [See Discussing the Benefits of Palliative Care]
“Palliative care has a huge role to play. I think most doctors don’t even think of referring patients to palliative care, even at the time of a serious illness diagnosis. I think it doesn’t even occur to them,” Dr. McPherson said.
“Palliative care is reserved, I think, for those with advanced illness, who are not actively recovering,” said Michael J. Brennan, MD, senior attending physician in the department of medicine at Bridgeport Hospital in Fairfield, and associate director of the chronic pain and recovery program at Silver Hill Hospital in New Canaan, Connecticut.
Dr. Brennan treats a wide variety of patients suffering from pain and disabilities as the result of musculoskeletal diseases, neurological disorders, cancers, and various cancer treatments. According to Dr. Brennan, the lack of any agreed definition for “palliative care” by the Institute of Medicine or Medicare has become a significant issue.
Further adding to this confusion are the recent guidelines released by the Centers for Disease Control and Prevention (CDC), which include “recommendations for primary care clinicians who are prescribing opioids for chronic pain outside of active cancer treatment, palliative care, and end-of-life care.”2 Practitioners may find this language included in the CDC guidelines vague and misleading. By grouping in palliative care with active cancer treatment and end-of-life (EoL) care, the CDC guidelines could be furthering the notion that palliative care is hospice care.3
Managing Pain Post-CDC Guidelines
According to Dr. Brennan, it’s likely the CDC wanted to avoid making recommendations on opioid-related pain management for patients suffering from serious illness. However, the guidelines appear to focus more on reducing opioid prescriptions than on improving efficacy and safety of chronic noncancer pain management.
This has sparked serious concern in the professional community, particularly for those who manage chronic pain conditions regularly. “They should have done another 3 steps on how doctors should address people who have severe chronic pain who require pain management where the guidelines fail them,” said Dr. Brennan.