A Patient-Centered Bill of Rights

Posted on: April 3rd, 2009 by
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Too often, patients are confused by the language of various Patient’s Bills of Rights because the language is often convoluted and confusing. It’s hard enough to be a patient, so reading through muddling language only adds anxiety.

So, in my Fantasy World of Medical Advocacy, here’s my version of what a Patient’s Bill of Rights should look like:

Patient’s Bill of Rights

1. You have the right to be civilly disobedient with any medical personnel who you perceive does not have your best interest at heart.

2. You have the right to hire and fire doctors at will.

3. You have the right to question treatments without a doctor being condescending to you.

4. You have the right to understand that you are on equal footing with a doctor because you are both human beings with comparable self-worth.

5. You have the right to truly collaborate with excellent doctors you trust and who truly have your best interest at heart.

6. You have the right to a voice in your own medical care.

7. You have a right to have doctors return your phone calls on a timely basis.

8. You have the right to follow your gut instinct and not allow medical people to manipulate you into ignoring it.

9. Whether you are incapacitated, in the hospital, or extremely sick, you have the right to speak up in any medical settings.

10. You have the right to choose your medical destiny to whatever extent possible.

11. You have the right not to be bullied or badgered by anyone — from receptionist to doctor — at any time.

12. You have the right to being treated with respect and to employ civil disobedience if you are being bullied, badgered, and disrespected in any way. In short, say “no” to thugs.
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This blog posting is an excerpt from my book in progress, Calling the Shots: Coaching Yourself Through the Medical System. Stay in loop for when it comes out. Subscribe to the blog in upper righthand corner.

Don’t Be Complacent

Posted on: March 27th, 2009 by
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If you have a medical concern, please get it checked out as soon as you can. This is a simple idea, but it is one of the hardest things we can ask of ourselves.

We may not follow up immediately on a medical concern because we are afraid our worst nightmares will come true. It’s much easier to lull ourselves into a false sense of complacency — that whatever we are worried about is a figment of our imagination, or that we are just hypochondriacs afraid to waste a doctor’s time with false alarms.

The truth is, it is easy to choose complacency when we are afraid. This is our default reaction to potentially disturbing news.

I chose two weeks of complacency after I found a very subtle dimple on my right breast during one of my routine monthly breast exams. During these two weeks, I had no peace. I kept telling myself that I wasn’t really seeing anything. Wasn’t that dimple always there and I failed to notice it? Wasn’t it just a mirage?

Then I would cry for hours, convinced it was cancer. Then I remembered that a recent mammogram was negative and my gynecologist had given me a clean bill of health months prior. He did the breast exam and found nothing, I reassured myself, so I was just fine.

Besides, a doctor told me I was too young for cancer. I was fit and had a healthy lifestyle. I was becoming jubilant over my self-imposed diagnosis of “healthy,” when a fear overcame me.

What if it really is breast cancer?

My first instinct was to tell myself that ignorance is bliss. The idea of having cancer was too terrifying to imagine. But when it comes to a possibility of any life-threatening condition, the whole ignorance-is-bliss mantra is a lie.

I realized that I had no choice but to investigate it. If it weren’t cancer, my mind games would stop and I’d be reassured. If it were cancer, it would kill me if I just ignored it. At least being proactive would give me a shot at living.

So I made an appointment to see the gynecologist, who, still unconcerned and who had trouble even finding the area in question, wrote me a prescription for a mammogram at my hospital’s breast center, just to be on the safe side.

Turns out, it was cancer.

And that’s when I first learned the power of self-advocacy. Despite the harsh treatments and future surgeries, I am alive now — and blogging up a storm — because I opted to be proactive.

Some people believe that “courage” is defined as “being fearless.” I disagree. To me, courage means being afraid and acting anyway, even if that means facing the darkest of truths.

Through my breast cancer journey, I realized that I am very courageous, but I realized that this is a true quality of ordinary people like me — to do extraordinary things that are often the unthinkable.

So if you or a loved one has a medical concern, call the shots and get it checked out. It may just save a life.

Beth L. Gainer is a professional writer and has published an essay on her breast cancer experience in the anthology Voices of Breast Cancer by LaChance Publishing. She teaches writing and literature at Robert Morris College in the Chicago area. She can be contacted at bethlgainer@gmail.com and gainercallingtheshots@gmail.com. She also blogs on the adventures of her cats, Hemi and Cosette, at http://www.catterchatter.blogspot.com/.

This blog posting is an excerpt from my book in progress, Calling the Shots: Coaching Yourself Through the Medical System. Stay in loop for when it comes out. Subscribe to the blog in upper righthand corner.

Courage in Stories

Posted on: March 20th, 2009 by
2

Kudos to a recent Oprah show, which profiled four celebrities: Fran Dresher, Scott Hamilton, Magic Johnson, and Montel Williams — each who are or have been grappling with serious medical conditions.

What struck me was these individuals’ candor and willingness to tell their stories. And as they shared their experiences, their faces of celebrity faded, only to be replaced with the face of humanity, gratitude, and humility. I watched, transfixed, and was really shocked at Scott Hamilton’s revelation that he had recently been diagnosed with a brain tumor. He expressed his gratitude for being able to be on this Earth for as long as he has.

In his Fairfield Citizen article, “In the suburbs: Winning the battle at all costs,” Steve Gaynes eloquently describes this particular show. (See the link at the end of this blog.) Like Gaynes, I found Dresher’s words inspiring: “‘Sometimes the best gifts come in the ugliest packages.'”

During my fight against breast cancer, I bore witness to the ugliness of illness. During hours in chemotherapy, I had a lot of time to think and reflect about my life. I was just focused on doing all I could to fight for my life. Cancer survivors would tell me that I might not feel this way now, but one day I might consider this illness a gift.

I was, like, “huh”?

So when hearing the celebrities’ stories on Oprah, I realized that these individuals are speaking from a perspective different than one who is just diagnosed. Their points of view only come after years of reflection about their plights.

Eight years after my diagnosis, I, too, now see that cancer was, indeed, a gift — a gift I didn’t want in the first place — but a gift nonetheless.

Because until I realized what it was really like to be ill, I took life for granted. I now do my best to appreciate each day and know how precious the world and my loved ones are to me. I still throw pity parties and still have to deal with the medical aftermath of my battle.

But I consider myself blessed, humbled, and very human.

http://www.fairfieldcitizenonline.com/columnists/ci_11957992

Beth L. Gainer is a professional writer and has published an essay on her breast cancer experience in the anthology Voices of Breast Cancer by LaChance Publishing. She teaches writing and literature at Robert Morris College in the Chicago area. She can be contacted at bethlgainer@gmail.com and gainercallingtheshots@gmail.com.

This blog posting is an excerpt from my book in progress, Calling the Shots: Coaching Yourself Through the Medical System. Stay in loop for when it comes out. Subscribe to the blog in upper righthand corner.

Calling the Shots in Your Medical Care

Posted on: March 14th, 2009 by
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This blog-form column is designed to encourage and inspire people to take the reins of their own medical care. Whether you have advocated for yourself or a loved one, or you want to know tips on how to do so, this blog is for you.

I became a self-advocacy expert when I was diagnosed with breast cancer in January 2001. The road toward health has been fraught with difficulties, setbacks, losses, and suffering. But I am grateful to be alive and loved — and to have a platform through which I can help others.

Every person who is diagnosed with any medical condition is unlucky. In particular, the “C” word in particular still fills people’s hearts with dread.

In some respects, I was especially unlucky when I was diagnosed with breast cancer. At a relatively young age, I suffered through a lumpectomy, chemotherapy and radiation, constant medical testing, a few false alarms, and eventually a preventive double mastectomy with reconstruction. I had also become infertile as a result of the treatments. The ironic part of it all is that I was in excellent shape and fit.

But despite my diagnosis, I was also lucky: my cancer hadn’t spread, I had excellent doctors, and I had the best advocate in the world – myself.

Through self-advocacy, I caught my own breast cancer, prevented a recurrence, and ensured I received top-quality HMO medical care. Before my breast cancer diagnosis, I knew nothing about interacting with doctors and self-advocacy. Sure, I had routine exams, but like most people, I was intimidated by doctors and believed everything they told me. I was not immersed in the medical world. My breast cancer experience would change all that.

In my self-advocacy journey, I have taken actions that were unthinkable to my pre-cancer self: hiring and firing doctors, asserting my needs to medical personnel, scolding difficult medical staff – and in one instance allowing everyone on a train car to know my sordid, private medical details! (Curious? Stay tuned for a future blog.)

This blog will offer tips on how to advocate for your medical needs. Regardless of your condition, situation, prognosis, or ultimate outcome, too much is at stake to allow organizations and medical personnel to intimidate you and fully determine your fate.

You are the one who can call the shots in your own medical care.

During my public speaking engagements, people often ask my advice on how to find the right physician, what to do if they are unhappy with their doctors, or how to handle being dismissed by medical personnel. When others find out I advocated for myself, they want to talk with me about this topic. People need to know how to advocate for themselves.

Although you cannot always control your medical situation, remember this: you are the driver of your medical care, not a passenger.

When it comes to self-advocacy, you call the shots.

Beth L. Gainer is a professional writer and has published an essay on her breast cancer experience in the anthology Voices of Breast Cancer by LaChance Publishing. She teaches writing and literature at Robert Morris College in the Chicago area. She can be contacted at bethlgainer@gmail.com and gainercallingtheshots@gmail.com.

This blog posting is an excerpt from my book in progress, Calling the Shots: Coaching Yourself Through the Medical System. Stay in loop for when it comes out. Subscribe to the blog in upper righthand corner.