“Driving Miss Norma” became a Facebook sensation two years ago after she was diagnosed with uterine cancer and told her doctor, “I’m hitting the road.” Accompanied by her son, daughter-in-law and their dog, Ringo, Norma took off across the U.S. and posted stunning photos of herself enjoying life to the fullest. She’s become the poster child for how people with chronic/terminal illness dare to live out the rest of their days feeling blessed. Indeed, Norma’s smile never faded.
Norma’s approach was unorthodox, but not complicated. She adopted a nonmedical approach to treating chronic illness that’s the basis of palliative care. This type of outpatient wellness program escapes most patients who frequent emergency rooms and rely heavily on physicians telling them what to do. On the other hand, Miss Norma told her doctor exactly what he could do with his surgical knife and radiation treatment. Palliative care helps to remind patients to live a little more and worry less. Like any other type of wellness program, palliative care focuses on stress reduction and quality of life.
While medical care relies on scientific evidence, palliative care is better appreciated as an ideology or faith-based way of life. It’s best to separate them into a left and right-brain approach. The two combined form integrative health. Like Reese’s Peanut Butter Cups combine peanut butter and chocolate, integrative health satisfies combined mind, body and spirit.
While chronically-ill patients need both medical and palliative care, few understand the benefits of palliative care and their physicians are often at a loss as to how to explain this type of care. (“Psychosocial symptom management” sounds like gobble-de-gook to most patients.)
What patients do understand is that they detest staying in hospitals. Sometimes patients must do this for their own good. Chronically-ill patients are frequently admitted to hospitals for no good reason other than physicians are fearful their patients will die. Against their personal wishes, many of these patients do die in hospitals. One astute patient mentioned to me that hospitals are like the Hotel California – “You can check in any time you like, but you can never leave!” (Norma chose to stay at Disneyland.) Patients who receive home-based palliative care can leave the ER or hospital anytime they choose. Those who are proactive or self-disciplined might prefer to call their palliative nurses before calling 911.
Patients become vulnerable and stressed out when they’re sick. Despite the best of intentions, physicians often contribute to patients’ pain and suffering. Patients need to maintain control of their own medical decisions and final destinies if they want to achieve peace of mind. They need to hope less and live more.
Here are five easy reminders to “live a little” with chronic illness:
Wellness tip #1: Eat an apple a day
Yes! Keep the doctor away at all costs and use that apple of knowledge to become more mindful. Mindfulness allows you to be reasonable and is the best medicine for chronic illness.
Wellness tip #2: Get plenty of recreation
Are you spending part of your day having fun? What recreational activities do you enjoy? Many reactional activities involve social interaction. What’s good for the mind and body is good for the soul.
Wellness tip #3: Imbibe in cheat days
“Smoke ‘em if you got ‘em” is usually not among the doctor’s orders. If smoking a little makes you happy, no harm, no foul. There is no value in adding misery to chronic illness.
Wellness tip #4: Make living easy
If menial labor causes significant stress – cut it out. Most people with chronic illness thrive in an assisted-living environment. Palliative care and assisted-living offer a kindred services for those with chronic illness.
Wellness tip #5: Make others envious
Age has its privilege and chronic illness affords patients a coveted disposition. Chronically-ill patients have the opportunity to build character and rise to the occasion. They are real-life Olympians who inspire courage and personal best in all of us.
Is palliative care the way to go? You bet! Home-based palliative care is key to patients dying with dignity. Dignity exists in patients who determine how to spend their time, energy and money. How can emergency room patients be more like Miss Norma? They need to have the wherewithal to state, “I receive palliative care.” This means – treat me more like an outpatient (a person) and less like a Guinea pig.
“Is Palliative Right for YOU?” To make an informed decision, read my booklet by the same name. This engaging guide explains palliative care in practical terms and contains helpful tips for patients and their caregivers to better manage living with chronic illness. This guide includes a brief questionnaire, outlines ten patient goals and personal values, AND informs patients of their “palliative care rights.” It is available on Amazon.
Personal wellness is a choice and palliative care is a viable option for patients with chronic illness. Like any pioneer who dares to live a little and explore the horizon, Miss Norma set the example and provided a legacy that prompted an upcoming movie of her life. What an accomplishment! Yet, her ultimate achievement was everlasting peace. In this regard, is palliative care right for you?