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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. 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.

“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.

“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. 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.”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.

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.

Indeed, many patients now seeing pain specialists are survivors of serious illnesses. These patients may have received palliative care during the course of their illness but now have transitioned into pain management for chronic pain. Cancer survivors comprise a predominant portion of these patients. Approximately 14 million people with a history of cancer are currently living in the United States,4 and two-thirds of these people are living more than 5 years after diagnosis. Dr. Brennan, who worked for a period of time at Memorial Sloan-Kettering Cancer Center (MSKCC) in New York City, currently sees many patients who are cancer survivors suffering from chronic pain conditions as a result of the treatments that were used to cure them, such as chemotherapy and mastectomy procedures.

“Back then, there was never a clinic for cancer survivors. There are some popping up now,” but only recently have doctors been developing more experience about treating chronic pain conditions found in patients who survive cancer, Dr. Brennan noted.

In July, the ASCO published one of the first guidelines addressing the management of chronic pain in survivors of adult cancers. As the cancer survivor population continues to grow, practitioners have to contend with a variety of chronic pain conditions, such as chemotherapy-induced peripheral neuropathy and persistent postsurgical mastectomy pain.

“A specific concern regarding the CDC guideline is the recommended dose limit of 90 morphine milligram equivalents [MME] per day,” said Judith A. Paice, PhD, RN, who is the director of the cancer pain program at the Feinberg School of Medicine at Northwestern University in Chicago, Illinois.

“This recommendation is untested in this population and may produce harm. We should strive to use the lowest effective dose to limit adverse effects, yet we have no data about an optimal dose effective for all individuals with pain related to cancer or its treatment,” said Dr. Paice, who helped coauthor the ASCO’s guidelines on pain management in adult cancer survivors.

Dr. Brennan agrees that the dose limit set by the CDC guidelines was ill-conceived, especially for cancer survivors. “The CDC guidelines were a necessary step to bring the attention of over-prescribing pain medications, but at the same time we can’t throw the baby out with the bathwater,” said Dr. Brennan. “There are people who do require [opioid] treatment, and there are people who may require doses that go above and beyond the recommended CDC dose limit.”

Following the release of the CDC guidelines, many doctors have moved completely away from prescribing any opioids. This has led to a sudden wave of patients being referred to pain specialists like Dr. Brennan, who finds the migration of patients to pain specialist practices is creating significant problems.

“What’s happening is there aren’t nearly enough pain specialists to handle the number of patients who need to be treated. It’s a phenomenon across the country where pain specialists are having to take on more and more people that don’t need to be in their offices,” he noted. According to the American Medical Association, there are approximately 4,800 physicians who identify as pain medicine specialists, and there are an estimated 100 million Americans in chronic pain. If only 20% of these patients were to see a pain specialist, this would mean that each doctor would have to see 4,167 new patients.8

Understandably, pain practices have become overloaded with patients, resulting in longer wait times for patients to receive the pain management they need. For Dr. Brennan, patients may have to wait, on average, 8 weeks. “Can you imagine if you had a family member in horrible pain and you are told it was going to take 8 weeks to get them to see a pain doctor and no one else will do anything until the pain doctor sees the patient?”

Furthermore, patients who had been prescribed pain medications for years are now having their prescriptions threatened by insurance companies who are citing the CDC guidelines as justification for cutting off their access to care. “This has been taken by insurance companies and they are running with it to try and restrict access to care for those who use these medicines,” Dr. Brennan explained. “Will doctors somehow or another be held accountable by insurance companies if we’re prescribing above the threshold?”

While Drs. Brennan, McPherson, and Paice all expressed their concerns over the possible deficiencies of the CDC guidelines, they still agree with the CDC’s primary focus on promoting safe, appropriate use of opioid medications for the management of chronic pain, especially as it relates to noncancer-related conditions. Indeed, the CDC guidelines share similar recommendations on opioid safety compared to the ASCO’s guideline.

“The pathophysiology and contributors to chronic pain in cancer survivors are different from those of patients with advanced cancer and those on active treatment. There is much more overlapping with chronic non-cancer-related pain patients, and many of the precautions proposed in the CDC guidelines might be useful for the care of these patients,” Eduardo Bruera, MD, chair of the department of palliative, rehabilitation, and integrative medicine at the UT MD Anderson Cancer Center in Houston, Texas, told Practical Pain Management.

The hope is that the CDC will revise specific aspects of the guidelines to ensure health care providers and lawmakers are in congruence with one another, especially as palliative care and pain management therapies continue to evolve and improve in efficacy and safety.