Why You Need to Be Your Own Healthcare Advocate & How To Do It

 

Why Do I Need to Be My Own Advocate?

You and your family care more about your health than anyone else. Nobody else has the same amount of skin in the game or enough time to focus exclusively on you.  That is just a fact. Healthcare workers are compassionate and care deeply about providing great care, but they just don’t have the bandwidth to spend endless hours thinking about your problem.

You have time to think deeply about your health condition. The physician who you are about to see? They probably didn’t know you were on their schedule until that morning. Most of the time they had to ask a nurse or medical assistant for your name right before they walk in the door (it’s happened to us).

So how much time do you think they really spend thinking about the nuance of your health problem? Not much, and because they don’t have time they must operate under the law of averages. Guess who isn’t average though…YOU!

Physican-Patient Time Is Limited

Physicians have limited time to spend with each patient because they are under pressure to see as many patients as possible. This is why the typical patient-physician encounter is only scheduled for 15 minutes. If you have cancer you might get a 45-minute consult.

The physician will look at your chart for a few minutes before the appointment. If you are lucky they will present your cancer history at a tumor board meeting, where multiple physicians sit at a table and discuss your case for… 5-10 minutes. That isn’t much time but they have many other patients to see, after all.

Cancer Doesn’t Care If Your Physician Is Helpful

Your physicians, nurses and the rest of your medical staff want to provide you with great care, that is the reason they are in the medical field. With that said, there are exceptions to every rule and some physicians do not develop positive, give-and-take relationships with their patients.

If you EVER get the impression that your physician is uncooperative and doesn’t appreciate your insight, then you need to find a new doctor. This is very important and we will repeat – Find a new physician if your current physician is not 100% cooperative with you.  Cancer doesn’t wait for physicians to come around and a physician’s recalcitrance is a red flag for decision making that could adversely affect your health – and survival.

A good doctor is a doctor who welcomes your input, questions and research. This indicates a certain amount of humility, which is necessary for a physician to provide exceptional medical care. Humility indicates that your physician is open to a point of view and information they hadn’t considered. A single piece of new information could be the difference maker that helps cure your tumor.

You Need To Form A Team With Your Health Care Providers

Teammates share information, work towards the same goal and most importantly they don’t emphasize who is responsible for team wins. This is because when the team wins, everyone has their own success to show for it. In order for you and your healthcare team to beat your tumor, there must be open channels of communication. You must be willing to consider all of their input, and they must be willing to consider yours.

Humility and openness by your physician shows that they have a commitment to team approaches to healthcare. Your physician may captain the team, but you are also an important player who can provide valuable information. Believe in yourself – you can and will productively add to your healthcare team.

Make Use of Open Source Information

Many people call our current era, “The information age,” due to the abundance of, and access to information. We recommend using the internet to research your health problems. At first it might be difficult to understand technical jargon, but if you stay determined you will soon be prepared to engage your healthcare team in meaningful discussions.

With a serious health condition like cancer it might be useful to make your own health records. You can make an electronic log of medications, supplements, diet, activities and symptoms. Record what makes you feel better or worse. Maybe some of your symptoms are connected, or a specific activity is really helping. It will be difficult to keep everything straight in your mind if you don’t record that stuff. If you review those records before your appointments, then you will ask your healthcare provider more meaningful questions.

Be Empowered: Be Your Own Healthcare Advocate

First off, you can do this.  We believe you can take control of your own healthcare and most importantly, we believe you should take control. Like we said earlier, nobody cares about your health more than you and your family.

“You can learn the basic elements of your advisor’s trade. You don’t have to learn very much, because if you learn just a little, you can make them explain why they are right.” – Charlie Munger

Charlie Munger is a brilliant thinker and you can apply his advice to healthcare. You are empowering yourself when you learn about your health problem and the various treatment options. Empowered patients have better outcomes because they take responsibility and add scrutiny to their healthcare.

Questions Worth Asking Your Physician

Here are some questions that you might consider asking your health care provider:

What is causing my symptoms and what treatment are you recommending? Are there any alternatives?

Why do you recommend this treatment over the other options? 

Is there a chance for short or long-term side effects and what are they?

When might I start to see improvement in my symptoms?

What tests do I need?

What is the reason for those tests?

Will the test results change my treatment plan?

What are my follow-up plans and what symptoms should I report before my next appointment? 

When can I resume my normal activities?

Cure-Hub Will Help You And Your Physician

Our clinical trial finder is very comprehensive and it is specifically designed to find treatments with an intent to cure your tumor. There are about 6,500 clinical trials around the world that fall under this criteria and our website is updated on a regular basis.

For many cancer types the number of clinical trial options is quite high. In fact, the number is so high and updates are so frequent that no human could keep track of each of them. But with some effort you can use the power of Cure-Hub to take control of your healthcare. It starts by creating a profile and searching for trials on the clinical trial finder.

We recommend saving several trials to your profile and then sharing them with your physician. Or you can ask your physician to help you search for trials. Once you have a list of trials, ask your physician, “If you were in my position, which trial would you enroll in and why?”

Resources

Here is a list of web resources that we find helpful when we do our own cancer research:

  1. https://www.cancer.gov/ – Comprehensive resource from the National Cancer institute (NCI).
  2. https://dailymed.nlm.nih.gov/dailymed/ – ‘Daily Med’ is the National Institute of Health’s database with detailed information on all clinically approved drugs.
  3. NCCN.org – National Comprehensive Cancer Network, used by physicians to help make treatment decisions. Free to register and use.
  4. https://scholar.google.com/ – Google search engine designed to find research publications.

This list is just a start and there are many other sites that might be useful. Feel free to send us other web resources to review and add to the list.