Think of a time when you’ve felt very sick, maybe a case of pneumonia, a bad bout of the flu, or a more serious illness.
You probably didn’t feel much like “engaging” with people. That’s the term health advocates use to describe what patients need to do to be effective in managing their health care.
It’s very hard to act like the CEO of your own body when you’re unbelievably tired, or in pain, or depressed. It’s virtually impossible to feel powerful when you have chronic bed head and it’s a challenge just to climb the stairs.
Illness can be paralyzing on many levels and can turn even the most pro-active person into a passive recipient of their healthcare.
Therein lies the problem: At a time when you most need to be asking tough questions, seeking a second or third opinion, gathering your medical records and reassessing your current treatment, you are typically least able to act.
How do you protect yourself when your energy reserve is at zero due to illness?
One solution is to create a personal healthcare checklist – and share it with the most important people in your life.
That means making sure that your spouse, family and friends know how you’d like to manage an illness long before you get sick.
Talk with them about it. And then, should you end up in such a situation, the people who care about you most can step in, and ensure that you get the help and support you want and need.
This statement isn’t about last wishes or how to manage terminal illness. Rather, it’s about clearly stating in writing your core healthcare and lifestyle principles. It describes your wishes for ensuring the best possible care.
Here’s what such a directive could look like (yours would likely be different).
Should I become too ill or too tired to effectively manage my own healthcare, I would like help in making sure I receive and maintain the highest quality care, as defined below:
- I always want a second, or, if necessary, a third opinion on any treatment, surgery or procedure that carries moderate risk or has notable pros and cons.
- I want to know the odds of benefiting from any treatment or procedure that is recommended.
- I want access to all my medical records.
- Before taking any medication, I want to fully understand the side-effects and long-term implications associated with each.
- I want to know and fully understand my diagnosis and my prognosis.
- I want the doctor’s un-edited opinion about my situation.
- I would like the opportunity to talk with other patients with the same diagnosis.
- I want exposure to whatever is necessary to be as educated as possible about the illness.
- I’d like someone to accompany me to appointments. Having another person listen and if necessary, advocate on my behalf, may be invaluable. At a minimum, I might need help remembering details, asking questions and taking notes.
- I want my physicians to talk directly to me, and not solely to the person who accompanies me.
- I do not want to hide due to depression.
- I want to maintain healthy nutrition and exercise habits, to the best of my abilities.
- I want to laugh daily and indulge in small pleasures with family and friends.
Having a statement like this will help you communicate your needs at a time when you’re likely to be spending most of your energy just coping with your illness.
At the very least, it will help the people who love you understand what you’ll need and want most from the healthcare system — and from them.
What would your personal health checklist look like?
Barbara Bronson Gray is a nurse who blogs at BodBoss. Alexandra Yperifanos is founder of ExpressWell, Inc. and can be reached on Twitter @AlexYperifanos.