by agebuzz Contributing Editor Julie Buyon
When it comes to accessing health care, we all hope to get the care we need and desire. No one wants to be a “difficult” patient, yet sometimes you need to be tough and uncompromising when advocating for yourself or a loved one. Does that toughness mean you’re a “badass” patient? Maybe, but being a “badass” or, perhaps more politely, a “powerhouse” patient doesn’t mean you’re being difficult or unreasonable. Rather, the powerhouse patient is an empowered person who partners with the healthcare team to get individually appropriate care. I believe we all need to strive to be “powerhouse” patients in today’s health care delivery system, especially in the face of serious or life-limiting illness.
Powerhouse patients tell their doctors what’s important in their lives: who they are, how they live now, how they want to live in the future, what they are hoping for, and what they want to achieve. They have goals for their care and quality of life and enlist their healthcare team in achieving those goals. They advocate to get the care that is right for them.
Sound like something you want for yourself or a loved one? If so, read on and learn my suggestions for becoming a “powerhouse” patient:
Your Team of Experts
Your doctor may be an expert in arthritis or heart disease or diabetes, but only you are the expert on YOU. I believe that medical expert(s) + patient expert = optimal health care. Conveying to your providers the expertise you have on yourself is the first – and, I think, the most important – step in becoming a “badass” patient so that you can receive the care that’s right for you.
Take the time to consider the following questions – and write down the answers for your health care providers: What makes you happy? What’s important to living the way you want to live? Is it, for example, being pain-free, getting down on the floor to play with the dog, living independently, playing tennis, being able to help out with the grandchildren, attending church, or cooking great meals? Think about both big things – like maintaining your dignity – and smaller things – like being able to take out the recycling without help. All of these activities have an impact on the quality of your life and make life worth living for you. Then, the key is not to keep all that great information to yourself! You need to share it with your doctor so that your doctor can better understand how to best help you live the life you want, by putting into place medical care and supports that serve your goals.
Many of us are passive participants when we see the doctor. We explain our medical issue (my knee is bothering me, for example) and then cede the agenda to the doctor, who will tell us what is medically wrong and what medical options are available in response. But the powerhouse patient will then shape the encounter with the physician into a discussion between the two experts: the doctor, the expert on medical interventions, and You, the expert on you and your body. How can the doctor give you what you want if you don’t tell him or her what it is you want? How can your doctor partner with you if you don’t share your expertise about your individual goals and what’s important in your life?
Here’s an example of a powerhouse patient in action:
Typical Patient: “My knee is really bothering me.” The doctor asks questions, performs an exam, maybe orders some tests, and makes some recommendations, based on what he or she knows about aching knees and what a typical patient would need.
The Powerhouse Patient: “My knee is really bothering me. I want to continue playing my weekly tennis game and the pain in my knee is making that difficult. My weekly tennis game is really important to me because I regularly see my good friends, it gives structure to my week, it’s great exercise and gives me so much pleasure. Can you help me stay on the court?” Now the doctor understands your goals and how important this medical issue is to YOU. The doctor also now understands that the goal is much larger than just alleviating knee pain- it’s also about continuing an important activity that enhances your quality of life. The doctor can now suggest medical options that help meet your goals and help you live your life the way you want to.
Be a Powerhouse Patient and Partner in Your Care:
Tell your doctors what YOU NEED and WHO YOU ARE. Take inventory of your physical and emotional needs and communicate those to your doctors. Doctors will not know how you want to live unless you tell them. They will not know what is important to you unless you tell them. They will not know your greatest fears unless you tell them. Tell them how YOU operate and what you need to feel and live better. Make sure you work with someone who treats YOU, not just your medical problem. There is a lot more to healing than just a focus on cure. Be a partner in your care and take advantage of the vast resources that are both within you and available to you.
And in future posts, I plan to explore more resources, tools, and strategies to help you become a powerhouse patient, including:
Julie Buyon is a palliative care patient advocate. She has professional and personal expertise in assisting people with complex illnesses navigate the health care environment. Julie’s role is to help patients feel empowered, and her agebuzz posts are intended to make sure agebuzz readers have all the tools and info they need to advocate for themselves and their loved ones. Julie would love agebuzz readers to email her at [email protected] with any questions or problems encountered with the health care system, and she will do all she can to address those issues in upcoming blog posts. She also welcomes feedback regarding her advice or recommendations. Read all of Julie’s agebuzz posts here and get in touch with Julie now at [email protected].