"My QoL Chart" helps patients provide a truly informed consent When thinking about your quality of life, make sure you include the things we often take for granted, such as:
touching, smelling, seeing, tasting, kissing, snuggling, talking, swallowing, eating, drinking, dancing, keyboarding, cooking, entertaining, reading, socializing, bathing, exploring, swimming, flying, being independent, hiking, running, playing the piano, just holding onto a loved one, etc. Developing a Collaborative Relationship with your Healthcare Provider
"Your QoL Chart" becomes an easy way for physicians to get an understanding of what activities make your life worth living. This almost, instant gift of understanding, can help your provider choose the best treatment plan to fit your life. You are respected and you are able to have as much quality of life as possible. IMPORTANT!
Allow yourself the time to think broadly about the activities that are important to you. Begin by listing your daily activities from the time you get up until you go to bed. Then, list the things you do on weekends, and finally, your activities when you are on vacation. If you wait until a medical emergency, you might only be able to think about what is vital at the moment, as in the example of breathing. But breathing alone, does not signify quality of life. Breathing and able to experience your “normal life”, is a more realistic answer. Also, please keep in mind your very personal activities such as going to the bathroom, blowing your nose, or scratching an itch, may be of importance to you. Are these okay without privacy or personal dignity? Privacy may not be important, but if it is, respect it. |
RESPECTING YOUR QUALITY OF LIFE IN YOUR PROGNOSIS The first documented use of "My QoL Chart" occurred in 2016 when Dyan, a theatrical director and creator of "Routes for Youth" and the nationally acclaimed, Sonoma County Probation Department's "Teen Court," found a growth on her tongue. Her GP diagnosed the growth as an adenocarcinoma tumor and referred her to a surgical specialist. She filled out "My QoL Chart" and shared it with the Department Chief, Head and Neck Surgical Oncology, at a large, Northern California Hospital, who was her surgeon. They discussed the chart for a few minutes and the surgeon scheduled Dyan for surgery the next Wednesday.
After anesthetizing Dyan on the table, he entered her mouth, ready to remove the tumor. Within seconds the doctor withdrew from her mouth and stopped the procedure. When she awoke, the doctor explained that if he had cut her, she would have lost too many of the important qualities of life that were on her chart. He then recommended that she have chemo and radiation therapies. That was the first time we had heard about a surgeon not completing a surgery because of a patient's quality of life. Dyan gave the Chief Surgeon a copy of "Everybody Needs A Hippo," and after reading it, he wrote Dyan, "Wow! That was quite powerful and representative of what most of my patients go through. I think this can be a really useful tool for patients and providers. Really great work!" |