Patient Advocacy

Who is your advocate?

Unfortunately, when you are feeling your worst is when you must be your most diligent. The battling cancer war includes a few small skirmishes along the way. No matter what your battle plan you should have help in the form of an advocate.

Here are just some of the reasons why.

1. Inputting information:You’ve just been diagnosed with cancer and you’re being overloaded with new terminology and massive amounts of information. Your advocate will be taking notes in the doctor’s office, at the clinic and anywhere you are introduced to new information. You can sit back and let your head spin.

2. Health care decisions: Post op, as you struggle with your nasogastric tube is not the time to wonder what your doctor said about treatment options, or where your notes are on side effects of that new pill you took or to hope you have the strength to surf the web for information. Your advocate can help you sift through information, do research and assist you in making the best decision possible for your care.

3. Your barrier: The health care advocate is the person who stands between you and the world. Your advocate is the person who gets up and approaches that intimidating clerk in the waiting room and reminds them you have been waiting an hour. They will also block the door to your room when you are napping and someone wants to scrub your floor. Enough said.

4. Mistakes happen: No one likes to discuss mistakes, especially not your caregivers. But as long as there are humans, there will be human error. Your advocate has your medical history and can double check every pill brought to you and every IV bag that is hung.

5.Dealing with red-tape: The maze of insurance and hospital bureaucratic regulations is overwhelming when you feel 100%. Let your advocate play phone tag and chase paperwork from simple pre-qualification details to following up insurance payments.

6. The squeaky wheel gets greased: Here’s a little secret from the nurse’s break room. The patient with the annoying friend who keeps pushing the call button for pain meds exactly when they are due, is likely to get the nurse’s attention first. I’m not saying this is fair but then again, the cancer patient already knows life is far from fair.

7. Hand holding: There is much to be said for the simple human touch. Consider how much time passes in the typical hospital day without human touch–real human touch, not clinical touch, as though you were inanimate. The simple squeeze of a hand communicates far more eloquently and contributes more to your recovery than words.

How to Find an Advocate:

Consider who you trust and who you would be willing to be an advocate for if roles were reversed. Sometimes several close friends are willing to share your advocacy.

Additionally there are professionals whose job is patient advocacy; these include private duty nurses. They’ll put your needs first because they are being paid to. Ask you hospital social worker or doctor if they can recommend someone.

Organizations focused on Advocacy:

National Patient Advocate Foundation

Patient Advocate Foundation

Patients are Powerful

ABA Breast Cancer Legal Advocacy Initiative

The Coalition for Patient’s Rights

Further Resources:

Hospital Stay Handbook: A Guide to Becoming a Patient Advocate for Your Loved One by Jari Holland Buck ( 2007)

The Patient From Hell: How I Worked with My Doctors to Get the Best of Modern Medicine and How You Can Too by Stephen H. Schneider and Janica Lane (2005)

Chemo Sabe: A Guide to Being a Personal Advocate for a Chemotherapy Patient by Brenda L. Joyner (2003)

The Activist Cancer Patient: How to Take Charge of Your Treatment by Beverly Zakarian (1996)

A Final Word.

An advocate, be it a friend, a family member or a paid representative will be there to be sure your patient wrist band is checked by every health care member, every single time. They’ll make sure anyone who enters your room has washed their hands. And they will be there in the middle of the night when you simply need someone to pass the emesis basin.

Advocacy is in my opinion, an essential part of assembling the best health care team and the best cancer treatment care plan to ensure your optimal path to recovery.