Demystifying Palliative Care

Despite American Society of Clinical Oncology guidelines calling for introduction of palliative care early in the course of disease, these services are underutilized. A recent survey of 240 oncologists nationwide found only 26% made palliative care referrals for patients on active treatment.

One barrier to introducing palliative care is a lack of understanding about exactly what these services entail and how to talk about them with patients. Palliative care is specialized care to help relieve symptoms and stress for anyone living with a serious illness. Together, specialized palliative care physicians, advanced practice nurses and social workers offer an additional layer of support to any patient who is suffering – no matter where they are in their health journey.

“Palliative care can be applied early in the trajectory of serious illness, and aligns with a plethora of goals that include everything from cure to life prolongation,” says Laura Shoemaker, DO, Chair of Palliative and Supportive Care at Cleveland Clinic and Vice Chair of the Ohio Department of Health’s Palliative Care and Quality of Life Interdisciplinary Council. “The focus is on living as well as possible and improving the quality of life for both patients and families.”

Untangling palliative care from hospice care

Palliative care is appropriate at any age and any stage in a serious illness, and is provided alongside curative and disease-modifying therapies. However, even in the medical community, it’s not uncommon for people to conflate palliative and hospice care, and this confusion can hinder patients’ ability to receive the added support they need. Physicians may be unclear on how to explain the benefits of palliative medicine or fear that patients will think it means their situation is dire.

“Lacking the right language to introduce palliative care can be a barrier,” says Dr. Shoemaker. “Often if they lack better language, physicians will tell a patient they need palliative care, adding ‘don’t worry, it’s not hospice.’ This is the least effective way to describe palliative care. How you describe it is vitally important because if we don’t accurately describe what it is and how it aligns with the patient’s goals and values, they aren’t going to accept it.”

Listening first

Dr. Shoemaker advises physicians to talk about what palliative care is, not what it isn’t. “Oftentimes it’s very helpful to ask questions first and tell last, so instead of starting the conversation saying you think they need palliative care, ask how they’re coping. For example, ‘I see that you’ve just been diagnosed with cancer and are planning to start chemotherapy and radiation. What is top of mind for you as you start treatment?” Inquiring first can help uncover physical symptoms, such as pain or nausea as well as psychosocial issues such as sleep disorders. From there, the clinician can have a conversation about extra support available to optimize quality of life and cancer-directed therapies through palliative medicine.

Determining timing

Often the catalyst for introducing palliative care is when a patient with a serious illness is having a significant functional or caregiving issue. Physicians sometimes assume that palliative care is prognostically limited but that’s not the case. In fact, some patients receive palliative care for years. For others, palliative care is an important part of getting through treatment or recovering from a serious illness.

Working in partnership

Palliative medical practitioners take a holistic approach to relieving pain and discomfort as well as addressing other challenges that are equally meaningful to that person and their family. These supports expand on the care being provided by the patient’s existing medical team. When the palliative care team sees a patient in clinic, they offer supports that align with the patient’s treatment plan, and then do a deep dive into symptom management, addressing physical, emotional, social and other issues.

The need for palliative care is likely to increase in coming years; the emergence of novel therapies means more patients are living longer with cancer, but that does not spare them from myriad physical and emotional challenges that accompany the disease.

“Getting a diagnosis of cancer turns your world upside down,” says Dr. Shoemaker. “There’s so much going on in a patient’s mind: How will this change my life? Will I be able to keep working? How will I get to appointments? Each conversation is different in terms of what supports a patient needs as they embark on treatment.”

For clinicians looking to learn more about palliative medicine or to educate their patients about it, visit getpalliativecare.org.