Becoming your Health Advocate

Helen and I have just started helping a client recently diagnosed with cancer. We wanted to outline the steps that we take as we go, so that everyone has access to the information.

The most important thing to do is to go online and do some preliminary research about your cancer, so that you understand what’s going on in your body and can formulate questions for when you next see your doctor. My go-to place is www.lef.org and in the search box, I type in Protocol for … Cancer. Usually I get lots of information. Print it out and put it aside.

Next, pick up a 2 or 3″ binder and many tabs to go inside it. This will become your Wellness Binder and it’s where you’ll keep everything you’ll need to reference along your journey. You’ll put your preliminary research here (okay, you can put it in the binder now), information about diets, supplements, lifestyle changes, detoxification strategies, contact information about your cancer care team, questions that come up between appointments and whatever else you can think of.

The article below is the next piece that you’ll add to your binder. You’ll find it a valuable tool for helping you to keep track of your health care (especially when visiting the hospital).

by Karen Garloch, The Charlotte Observer, N.C.
  1. Expect mistakes and have an advocate with you in the hospital.
  2. Check every medicine. Make sure the dose is right. If you don’t know the correct dose – ASK.
  3. Be assertive. “Being nice can get you killed.”
  4. When in doubt, “say No.” Demand an explanation.
  5. Be vigilant during transitions, from one floor to another, or when shifts change.
  6. Alert the nurse or “rapid response team,” if something seems wrong.
  7. When discharged from the hospital, get detailed instructions and contact information. Know what symptoms might signal a worsening situation or infection.
  8. Hospital doctors may never speak to your primary care physician. Take your records and don’t assume doctors already know what’s in them.
  9. Double-check everything. Don’t assume no news is good news or that test results are always correct. Get copies of lab results in a timely fashion. If something seems wrong, request a repeat.
  10. Take a friend or family member to doctor’s visits. Nearly every error made in the hospital can also be made in the outpatient setting. A second pair of eyes and ears can be very useful in getting instructions and spotting problems.
  • Take a list of your top health concerns/symptoms.
  • Ask your doctor for a recap to make sure you’ve been heard.
  • Take notes or record the conversation so you can remember.
  • Carry a list of all your medicines and supplements.
  • Find out about the most common and serious side effects your medicines may cause (a great resource for chemotherapy drug information is www.chemocare.com).
  • Ask the doctor how confident he is about your diagnosis. Find out what else could be causing your symptoms.
  • Get a second opinion.
  • Ask health care providers to wash their hands before they examine you.
  • Keep track of your progress: Keep a diary of relevant measurements such as weight, blood pressure, blood sugar.
  • Be vigilant when moving from one health care setting to another. Mistakes and oversights are especially common during transitions.
  • Ask how to get in touch with health care providers. Get phone numbers or email addresses, and learn when to report problems.
(c)2011 The Charlotte Observer (Charlotte, N.C.) Distributed by Mclatchy-Tribune News Service.
I realize these lists make it seem like the medical establishment is out to get you. That  isn’t the case at all. Most medical staff really care about your health and well-being. But in a hospital there are so many people working with you that important pieces of information can be lost in the shuffle.
You are the only one who can be responsible for yourself. And for keeping track of all of the information you need to return to health.
Be your own advocate. Make sure that your needs are met however uncomfortable it makes you feel to ask for clarification. Studies have found that the patient who refuses to take NO for an answer is the one most likely to get better (see #3 above).

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