However, palliative care is not limited to hospice.
Wait . . . before this gets more confusing, how is “palliative” pronounced?
The experts would say: pal-ee-ey-tiv. Me, I usually mispronounce the word, abandon one of the syllables, and go with: pal-ya-tive. According to the stuffy Oxford English Dictionary, the word emerged in Late Middle English from the French by way of ancient Latin. With Latin and French in its family tree, no wonder palliative is a tongue twister.
What did it originally mean? To cloak. In other words: to cover, hide, or disguise.
Enough word history.
If young, elderly, or in between, and have an illness causing discomfort pain, you should consider “cloaking” the pain with palliative care. I refer here to serious physical pain (often accompanied by emotional and spiritual suffering) that never goes away. While doctors won’t be telling you the disease you have will likely cause death in hospice’s “six months or less” timeframe, what if it causes daily, physical anguish? Sometimes the pain can be so relentless and persistent that a patient may think dying is better than living with non-stop agony.
When in pain, everything else becomes secondary.
The National Hospice and Palliative Care Organization provides this description:
“Palliative care is patient and family-centered care that optimizes quality of life by anticipating, preventing, and treating suffering. Palliative care throughout the continuum of illness involves addressing physical, intellectual, emotional, social, and spiritual needs and to facilitate patient autonomy, access to information and choice.”
If you have an illness with constant pain, I hope your physicians voluntarily provide information about palliative care. If a doctor doesn’t bring it up, then you should. Many hospitals will offer palliative care. (For examples, here is a link to one of my local hospital’s palliative care unit.) Be a squeaky wheel when it comes to your health and your search for options!
But some resist, and not only because they can’t pronounce, of never heard of, palliative.
We grit our teeth, claiming we can handle the pain. We’ll make lemonade from lemons! Man up! Grin and bear it! Be strong! Most have watched a dumb television show with the hero confronting a painful moment. Perhaps our hero has a “flesh wound” or a dislocated shoulder or another crisis that happens just before a commercial break. In the next scene, our brave fellow clamps his teeth on a belt while an attractive bystander digs out the bullet or yanks the shoulder back into place.
Tough guys deal with tough times! How dumb . . .
You don’t have to suffer with pain. And it’s not just medication that palliative care will offer for relief. Part of the care usually includes access to various professionals (similar to hospice). They will help you understand breathing and meditation techniques, diets, and the right (or wrong) kinds of exercise. But again, some will consider that as a sign of weakness. I don’t need anyone to show me how to move air in and out of my lungs! I don’t need to tell a Social Worker or Counselor all the frustrations or doubts that add to my physical pain! I’ll just bite the proverbial bullet.
And what about those “medications?” Let’s be honest, quite a few of the pain management tools are addictive. They aren’t the over-the-counter Advil or Tylenol-like options . . . but morphine and methadone and other heavy hitters that seem second cousins to street drugs. How calm and professional to discuss “pain management,” but why should anyone with a nice, long life ahead—who happens to have a rotten illness with way too much pain—risk becoming a junkie? That’s not a compromise guided by a nice doctor’s expert suggestions, but a sell-out to the devil.
No it’s not.
The drugs for pain reduction and relief in palliative care (and also in hospice care) are medications prescribed by physicians. The medical staff that gives them tries to find the best balance for an individual patient’s real and changing needs. While every medication is potent—and yes, some are addictive—each is a valuable and practical choice for serving your health needs.
This is not about dirty needles, drug dealers, or a hundred other strange images we have from Law & Order reruns or old Al Pacino and Robert DeNiro films. Palliative care, with compassionate and professional supervision, allows a patient with a debilitating illness to have a normal, productive, and yes pain-free (or pain-reduced) life.
Stop gritting your teeth. Stop imagining the worst.
Talk openly and honestly about your illness, and about the ways pain can be managed . . . and start living with less pain and more activity.
In last week’s post, I shared “8 Secrets” about hospice. Palliative care was my bonus #9. It’s no “secret” that all hospice care is palliative. Every hospice patient has a life-limiting illness and often needs an immediate response to her or his pain, along with medical equipment and staff support that will (hopefully) bring a peaceful death.
However, palliative care outside of hospice is a kind of secret. Many serious illnesses don’t automatically lead to “six months or less” to live. They are treatable and manageable. Nonetheless, physical, emotional, and spiritual pains are part of their side effects.
Please chat with your doctor about the ways palliative care can help with a (hopefully) peaceful, productive, and lengthy life. That kind of care shouldn’t be a secret.
(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.)by