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Best tips about traps to avoid as a loved one's patient advocate
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You may have joined the growing number of people who accompany their loved ones to doctor appointments to assure that they get the best medical care possible. In so doing you can literally make the difference between life and death. However, common mistakes can either stand in the way of the desired medical outcomes or do outright harm.
A patient advocate is someone who promotes the best interests of the patient. Anyone can serve as an effective patient advocate; it does not require specialized medical training. It involves basic communication skills, the willingness to think through a problem and the courage to do things differently.
Here are 5 common traps to avoid when advocating for a parent, family member or friend who is competent to make his/her own medical choices.
Failure to get permission to act as a patient advocate. Caring people want to help special people in times of medical need. They assume that their help will be welcomed with open arms. However, uninvited help can be a burden to patients.
My client Sam says, “I know Gina has a good heart, and that’s why she sent me information about macrobiotic diets. She didn’t realize that this put me in an uncomfortable situation of defending my eating habits.”
Be sure to get permission to step into the patient advocacy role. You could say, “I love you and want the best for you. Would you like me to help you get the quality of medical care I want you to have?” Don’t second guess the answer. If the answer is no, clarify your role. Ask, “How can I help?”
You can always offer to be a caring listener. In fact, listening is the critical starting point for effective patient advocacy. Being a sounding board can be much more challenging than helping as a patient advocate. Listening to a problem without fixing it can be torture for the story listener and a treasured gift for story teller.
Failure to recognize your loved one’s style. If you know your parents are phobic about flying, you would not insist that they hop on a jet. It’s simply not respectful. You would discuss alternative ways of reaching the destination. Insisting a parent ask for a referral to a medical specialist or tell a doctor about unacceptable medication side effects can be like insisting they take the dreaded plane ride. Chances are it won’t happen, and then you unwittingly add to their burden because they failed to live up to your expectations.
Past experiences illuminate the style preferences. “Dad, you have faced illness before. In the past, what kind of support made things easier for you? What made it harder?” The good news about bad medical experiences is that it points to what works and what to avoid.
Explore whether your loved one is interested in doing things differently. “Mom, in the past you’ve let the doctor make all your decisions. We’ve both heard stories about people who have gotten better medical care when they speak up. Remember when David got a second opinion before his cancer operation and found out he didn’t have cancer after all! Would you be interested in taking a more active role with your doctor?”
Failure to understand the difference between showing and telling. Many patient advocates think that their job is to point the way to quality health care by telling a loved one what to do. Telling a parent or friend to interact with the doctor in a more empowered way, and, for example, ask about treatment options or explain the medical condition in plain language or share embarrassing concerns is like telling them to travel to a foreign country without offering even the most basic words like “please “ and “thank you.” Travelers can be overwhelmed because they literally not know the words to say.
Try showing rather than telling. Imagine you’re actors in a play about a sick, scared patient trying to get better, and have fun with the acting! Cast your loved one in the role of the doctor and encourage him/her to say all the dreaded things that might come out of their doctor’s mouth, like “When did you go to medical school?” or “Who do you think you are to question me?” or “You’re fired!” You play the patient, and respond. Then switch roles so your parent or friend has the chance to get the words out of his/her mouth.
Do not despair if your parents or friends or relatives choose not to speak up with their doctors. The goal is to assure their needs are met, and sometimes this means others will speak for them. You can ask before the appointment, “Would it be okay if I asked the doctor if there are alternatives to this medicine that is causing you to be so sleepy?”
Failure to recognize that behind every medical goal is a personal goal. Ed said, “I really don’t care about my cholesterol level. To me it’s just a number on a lab report. What IS important is avoiding a heart attack, like the one that took Dad’s life.” This is what motivates patients to follow through with the treatment plan. You can help your loved one and the doctors keep their eye on the ball.
Clarity about the medical destination and the personal goals become particularly important when cure is not an option. When the doctor says, “We’ve done all we can.” flexibility and resourcefulness will help meet personal goals. Andrew wanted to recover from his stroke so that he could cultivate his vegetable garden. Although he made good progress in physical therapy, he was unable to walk. He and his wife decided on a patio garden, which he can tend from his wheelchair.
Ask, “Why is your recovery important to you? What doors will good health open?”
Failure to respect patient-doctor trust. The most egregious crime a patient advocate can commit is disrupting the trusting partnership between patient and doctor. This relationship may be the most powerful medicine at hand. Even if you have objective evidence that the doctor’s care does not meet evidence-based standards, you do tremendous harm by suggesting that the doctor is offering sub-optimal medical care. Instead, gently guide your loved one to the opinion of another doctor.
You can say, “I know that you think the world of your doctor. All the experts talk about the importance of a second medical opinion. I bet your own doctor gets second opinions when her own family members are sick. How about if I set up an appointment.”
You advocacy efforts must preserve the trust, or everyone will lose.
The secret to success as a patient advocate is to keep the end in mind, and then work backwards. You have everything it takes to make sure that your loved ones’ wants and needs are recognized and honored when they put on the patient gown.
Vicki Rackner MD is described as the "Suze Orman of Health." She's a surgeon who left the operating room to help patients and their family caregivers manage their health through her company Medical Bridges . Dr. Rackner helps both individuals and businesses stretch their health care dollars through better doctor-patient collaboration. To get your free special report The Biggest Skeleton in Your Doctor's Closet, write DrRackner@MedicalBridges.com or call 425 451-3777.
Fun fact
You have everything it takes to act as a paetiont advocate for your loved one. It does not require medical training. You need to be willing to make sure that your loved one's concerns have been heard, and that you understand what the doctro is saying.
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