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Palliative Care: Dying With Dignity

Palliative care helps patients and families cope with the spiritual, emotional, and physical pain and suffering of terminal illness and end of life issues.
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Interview with Mary Lynn McPherson, PharmD, and Russell Portenoy, MD

When Mary Lynn McPherson, PharmD, BCPS, CPE, heard that a 50-year-old hospice patient needed advice about taking on an opioid with his medication regimen, she went to see how she could help. She was surprised to find out the man actually lived pretty close to her.

Diagnosed with amyotrophic lateral sclerosis (ALS), he was concerned about starting on a new opioid regimen. Would he have to deal with constipation? It was certainly a possibility, Dr. McPherson told him. However, there were medications available to treat the constipation. So after hearing the facts, he decided to give the opioid a try.

For a patient faced with a tough diagnosis and a limited life span, such hard decisions are all too common. For Dr. McPherson, a consultant pharmacist for palliative and hospice care programs, it’s just one example of how the discipline can make a difference in helping terminally ill patients make informed decisions, whilst ensuring that pain and symptom management are a top priority, especially during their last days of life.

Dr. McPherson said this strategy is sometimes referred to as “aggressive palliative care,” where “we aren’t just aggressive at managing pain and symptoms—we also are equally diligent about helping patients and their families cope with spiritual suffering and all of the other emotional issues that arise during a patient’s final days.”

Focused on Comfort, Not Cure

Palliative medicine is a board-certified subspecialty of over 10 specialties (including internal medicine, family medicine, neurology, physiatry, emergency medicine, radiology, anesthesiology, surgery, pediatrics, OB/GYN, and others) that can be delivered on both an inpatient and outpatient basis. The discipline is concerned not with providing cures but with providing comfort, improving the quality of life of patients while also informing and supporting the families. And those services are most effective when they are provided in a collaborative fashion, noted Dr. McPherson, who is a professor and vice chair for the department of pharmacy practice and science at the University of Maryland in Baltimore, Maryland.

In fact, in many ways, palliative and hospice medicine are not only “interprofessional by definition,” they are also transdisciplinary in practice, she explained (see Sidebar). “I always tell my hospice nurses, ‘I’m going to make you all 10% pharmacists and I’m going to be 10% social worker, so we really do a lot of cross coverage. It really does take a village to get this done.”

Given the complexities of multidisciplinary care, some challenges are inherent. Just keeping the lines of communication open amongst professionals is a constant priority, especially when new treatment decisions must be made, Dr. McPherson noted. When patients first enter the hospice setting, they often feel more comfortable sticking with their primary care physician. In such instances, hospice nurses typically end up consulting the resident hospice physician on various matters that come up and then relaying that communication to the patient’s own primary physician, she explained.

Yet even with constant communication, there can be times when a patient is not getting the most optimal relief from his or her condition. When a patient’s outlook becomes increasingly dire, palliative medicine becomes ever more essential, and sometimes, the palliative approach to treating a patient may mean making some difficult decisions in concert with the patient and family.

“Everybody wants a miracle, and medical miracles are amazing when they happen, but they’re just not that thick on the ground,” noted Dr. McPherson. Sadly, palliative care professionals often are the ones who have to break the bad news to the patients and families. End of life (EOL) discussions can be difficult for physicians to have, but they’re incredibly important for securing the future health care strategy for the patient—something palliative professionals are highly trained to discuss competently, Dr. McPherson pointed out.

“Nobody wants to admit it; death is like a defeat to a lot of people,” she added. However, once patients are aware of their situation, it enhances their palliative options, which can make a real difference in outcomes, she noted. Patients value an open line of communication with their health care provider and typically express a desire for using shared decision-making when it comes to future treatment options.1

Reducing the burden of serious illness by relieving pain and symptom distress is a core precept of palliative care, noted Russell Portenoy, MD, Chief Medical Officer at MJHS Hospice and Palliative Care and Executive Director of the MJHS Institute for Innovation in Palliative Care in New York City. “The best practice to follow is one that implements one or more treatments that aim to optimize the balance between pain relief and side effects, as informed by the patient’s goals of care and medical condition. When life expectancy is short, many patients opt for comfort even if the safest and most effective therapy—opioid-based analgesic drug therapy—is associated with the side effects of somnolence or cognitive impairment,” he noted.

Even at this phase of life, patients may seek pain relief without the experience of side effects that compromise function. When this is the case, routine opioid-based analgesic drug therapy may work well, but if not, any of a variety of alternative non-drug approaches, including interventions, may be appropriate.

“In short, professionals who are treating patients with serious or life-threatening illness always should aggressively manage pain, but the specific decisions about the most appropriate treatment should be based on a careful assessment of many complex factors,” said Dr. Portenoy, who is also professor of neurology at Albert Einstein College of Medicine.

“It is certainly possible to unintentionally increase the burden of illness when trying to lessen it by aggressively treating a symptom or other problem,” noted Dr. Portenoy. However, competent palliative care re-assesses the sources of burden and modifies the treatment strategies so that the net result is beneficial, he noted. “Careful assessment and caution when implementing therapy for the medically fragile are the best approaches for avoiding even unintentional serious adverse effects.”

Checking Polypharmacy in End-of-Life Care

With 30 years of experience in palliative and hospice medicine, Dr. McPherson has designed her own critical thinking process for designing appropriate drug regimens for EOL patients. Sometimes, patients do need help weighing the benefits with the burdens of their treatments, she said, especially if their prognosis is negative.

Last updated on: February 9, 2016
First published on: December 1, 2015
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Pain Management in a Palliative Care Setting