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Patient advocacy: Five mistakes to avoid
Tanya said: “I’m not doing well in my new job as my mom’s patient advocate. Her doctor dismisses her achy, stiff joints with the offhand comment, ‘You’re not a spring chicken. That’s part of getting older.’ Mom wants to see her friend’s joint specialist, and I told her to ask her doctor for a referral. Mom and I have gone over this again and again, and nothing happens. It seems to me that she would rather suffer with stiff joints than experience the mild discomfort of asking for a second opinion.”
Tanya would happily accompany her mother to the doctor appointment and ask for the referral herself. However, she lives far away and frequent trips to her hometown are simply not an option. Tanya thinks her fallback plan is to convince her mother to ask for a referral. In her heart, Tanya knows that her mother has no intention of breaking her code of silence with her doctors.
I define a patient advocate as someone who promotes the best interests of the patient. A family caregiver can serve as an advocate and help a friend or relative take the fastest, most direct course from illness to optimal health.
You have all the skills you need to be a patient advocate. It does not require specialized medical training. All it takes are basic communication skills, the courage to do things differently and willingness to think through a problem.
Here are five common mistakes that either stand in the way of the results patient advocates want for their loved ones or cause outright harm. You can avoid them should you serve as an advocate for a parent, family member or friend who is competent to make his/her own medical choices.
Mistake No. 1: 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.
Uninvited help can be a burden to patients.
My patient Sam said, “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.
Mistake No. 2: 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. “Mom, 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?”
Mistake No. 3: 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 do 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.
Mistake No. 4: 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.
You can ask, “If you had a medical magic wand, what would you wish for?”
Mistake No. 5: Plant seeds of mistrust. 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. Tanya wants her mother to be able to resume her walks and be freed from daily pain. Her job as a patient advocate is to figure out how to meet this personal goal. There are many tools at hand to get the job done.
You have everything it takes to make sure that your loved ones’ wants and needs are recognized and honored when the put on the patient gown.
Vicki Rackner, M.D. can be reached at www.Dr.Vicki.org.