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Defining Palliative Care

May 31, 2021 | AONN+ Blog
Featuring:
Lillie D. Shockney, RN, BS, MAS, HON-ONN-CG
Lillie D. Shockney, RN, BS, MAS, HON-ONN-CG
Editor-in-Chief, JONS; Co-Founder, AONN+; University Distinguished Service Professor of Breast Cancer, Professor of Surgery, Johns Hopkins University School of Medicine; Co-Developer, Work Stride-Managing Cancer at Work, Johns Hopkins Healthcare Solutions

Palliative care has a bad reputation, and it stems from the origin of its name. The term comes from the Latin word “cloak”, referring to palliative care’s ability to cloak symptoms. Unfortunately, the word cloak was used centuries ago and, in some cases, is still used for explaining how a person’s body, upon death, is shrouded—covered and wrapped in cloth.

This has resulted in palliative care being associated with death and severe symptoms for centuries.

All treatment—surgery, chemotherapy, radiation, immunotherapy, hormonal therapy, etc—that a patient receives once diagnosed with advanced cancer, is palliative treatment. This is rarely told to the patient; they simply know that they are getting cancer treatment, not understanding that the goal is control of the disease instead of cure.

Introducing our patients to a palliative care specialist early on, before symptoms are an issue, allows the palliative care specialist to be more proactive. The palliative care specialist will know what side effects to anticipate from specific treatments and what symptoms the patient will manifest from the disease progressing to specific areas of their body. It is far easier to keep a horse in a barn if we don’t open the barn doors. Once the horse has left the barn, the ability to get the horse caught and back into the barn becomes quite difficult.

I want the term palliative care formally changed to something that describes its purpose better. I refer to it as “quality of life preservation” or “quality of life restoration.” This is also a better way to explain it to a patient and enables the patient to embrace palliative care rather than fearing that the team is giving up on them or that they will die soon.

Unfortunately, palliative care often isn’t mentioned until hospice is being discussed. This links the term to death only and not with the patient living in harmony with their disease, still finding and experiencing joy in each day.

As the patient’s advocate, reach out to a member of the palliative care team early, especially for patients with advanced cancer. It is ideal to have a palliative care specialist on board from the moment the patient learns their diagnosis. Specialists in this field use alternative methods for pain control instead of increasing the dosage of opioids given. They are talented at stimulating the appetite, getting nausea under control, preserving energy for moments that bring the patient joy, and always focusing on the patient’s goals of care.

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