What Is Palliative Care?

hope-darrentunnicliff-flickr-4232232092-ccbyndnc2Words can intimidate.

If we don’t understand a word’s meaning, we may resist thinking about it. If we can’t pronounce it, we may never write the word in a sentence, let alone say it out loud in a question or concern.

I suspect palliative is one of those intimidating words. It seems like a highfaluting collection of vowels and consonants that frequently accompanies the easier to pronounce, but certifiably scarier . . . hospice.

Hospice is familiar, right? Nearly half of those who die in the United States will experience days, and sometimes even a year or more, in hospice care. Hospice is never difficult to say, but it represents a step many would prefer to evade. Nonetheless, it’s heartening that the linguistic roots of the easy-to-pronounce hospice were first references to literal sites for respite. Once, religious orders ran hospices, early versions of bed-and-breakfasts for travelers far from home. Though the word evolved into end-of-life care, it retains a sense of helping those on a journey. Indeed, the hospice where I work has “Honoring the Journey” for its pubic statement of purpose.

But who can pronounce palliative, let alone understand its role in health care? There’s even a gripping 8-second Youtube video on how to say the word!

Let’s see if I can make palliative care less intimidating and more part of a conversation you might have with a family member or health care provider. (Come on, trust me!)

First, let’s time travel to the 11th and 12th centuries, when speaking Medieval Latin was all the rage in Europe. This was before Johannes Gutenberg developed the moveable printing press in Germany and prior to the first eyeglasses appearing on a face in Italy. In all likelihood, the Medieval Latin word palliare surfaced between Leif Erikson’s 1002 expedition to the coast of today’s North America and the year 1100, when the Persian mathematician and writer Omar Khayyam penned his collection of poems dubbed The Rubáiyát.

Palliare meant . . . to cloak. Wait! Isn’t that what comic superheroes wear? Don’t Batman and Superman don a cloak before they engage in their adventures? However, this is a different form of cloak, less the noun meaning a garment and more the verb referring to disguise or hide.

Centuries later, in the realm of medicine, palliare served as the root for palliative. Here is a definition of palliative care from a 2009 nursing brochure:

Palliative care provides relief from distressing symptoms including pain, shortness of breath, fatigue, constipation, nausea, loss of appetite, problems with sleep and many other symptoms. It can also help you deal with the side effects of the medical treatments you’re receiving. Perhaps, most important, palliative care can help improve your quality of life.

It could be said that modern palliative care cloaks those “distressing symptoms” through an array of medications, acupressure, diet, and so forth.

All hospice care is palliative care. A primary goal in hospice care is to try to keep a patient free of pain as they approach the final days of their life.

Door-GraphicBut not all palliative care is hospice care! A patient may have a disease with multiple options for treatments that could lead to a remission, or at least could reduce the symptoms enough to provide years of active living. While the disease has the potential to be life threatening, it is not considered a terminal illness. However, many of those diseases—often a form of cancer—cause pain. (Or the medical treatments that might achieve healing or remission are painful.)

Palliative care manages—cloaks—the pain. By using various medications along with, for example, counseling and acupressure, a palliative care patient can anticipate a long, meaningful life. If family members express fear over a loved one becoming “addicted” to a particular drug, it’s important to have a conversation with health care providers about palliative care’s methods and goals. With a properly managed palliative response, there is little chance for addiction and a great chance for many productive, pain-free (or pain reduced) years.

Not all physicians understand palliative care. Some doctors are “old school” and unaware of the advances in pain management. Because of their medical specialty, other doctors don’t have a chance to learn about options outside their expertise. Ask your doctor about palliative care. If her answer doesn’t satisfy your curiosity (and your potential needs), don’t hesitate to get a referral to a physician who can explain palliative care and give you choices to consider.

Palliative began as a word that meant “to cloak.” It is well and good to cloak pain. But don’t hide from your treatment options. Openly express hopes and explore opportunities. Don’t let ignorance cloak your efforts toward better health with less pain.

In the 12th century, when palliare was first spoken in Medieval Latin, Omar Khayyám wrote . . . “Be happy for this moment. This moment is your life.”

In hospice’s palliative care, every effort will be made to have a patient’s final moments be as happy—and pain free—as possible.

In palliative care, where hospice may never be mentioned, every effort will be made to cloak a patient’s pain and to provide a long life of happy moments.

(Hospice vigorously protects a patient’s privacy. I’ll take care with how I share my experiences. Any names used are fictitious. Events are combined and/or summarized.)

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