For anyone dealing with chronic illness, being your own patient advocate is crucial for navigating the sometimes complicated and mysterious terrain of modern medicine. The Successful Patient is the working title of a memoir I’m working on. In it, I share my experiences as a patient of chronic illness learning to be my own patient advocate, the mistakes I’ve made and what I’ve learned from them, successes I’ve enjoyed and what I’ve learned from them. Whether you have a chronic illness or not, everyone wants to be successful in their dealings with medical providers and their support teams. All of us need to be our own patient advocates, even if we have family or friends who are also advocating on our behalf.
The Most Important Medical Relationship
Your most important medical relationship is with your doctor. For most people, that’s their primary healthcare provider (PHP), usually an internal medicine doctor. If you are also seeing a specialist, that doctor will be the most important relationship regarding the issues related to the specialty.
The doctor figures out what is wrong, determines the best treatment for you, orders test and diagnostic procedures, writes prescriptions, and is generally the go-to person regarding your care. You may also deal with nurses, or nurse practitioners, lab technicians, radiologists, and other technicians, perhaps a surgeon, and her team which include both doctors and nurses.
As in any relationship, there are aspects of it that make it work. Communication is the most essential because everything else flows from it. You build trust through communication and your behavior, demonstrate your honesty through communication and your behavior, and practice your compassion. Your doctor does the same thing. You are each observing and listening to the other in order to see if you can trust each other. Does your doctor do what she says she will do?
How do you tell when a doctor is a good communicator? Notice first his body language. Is he open and accessible, or has he crossed his arms across his chest?
The mark of a good communicator is how he speaks to his audience, i.e. you. Doctors have a wealth of medical terminology available to them, but those good with patients know to use little of it with them. Your doctor’s vocabulary will be tailored to you, his listener. Some doctors distance themselves from patients by using only medical terminology. If that happens, you are well within your rights to ask him to use plain English. A good communicator will be concerned about being understood.
That concern will motivate him to be willing to answer any and all questions. He will be eager to know what you want to know. You will want your doctor to be also knowledgeable but humble, i.e. to know his fallibility and not be afraid to say “I don’t know.” Doctors are human beings. They are subject to the same insecurities, doubts, flaws and strengths that patients are, but sometimes feel that it’s their job not to show their humanity too much in order to instill confidence in their patients. Maybe I’m unusual, but I’d rather see my doctor accept his fallibility. He’s more likely to work to avoid mistakes.
A couple years ago, I read a memoir by a Crohn’s patient, Jon Reiner, entitled The Man Who Couldn’t Eat. Reiner wrote about his experience of a perforated intestine, his rescue, treatment, complications, and ultimately his healing. About halfway through the book, he talks about doctors. According to Reiner, they fall into two categories. The first are the SOB’s, or doctors who stand at the Side Of the Bed. These doctors empathize, show compassion, make constant eye contact, treat the patient as a respected human being, are open to any questions, and often will be comforting. They engage the patient in the treatment process. The second are the FOB’s, or doctors who stand at the Foot Of the Bed. These doctors make no eye contact with the patient, speak as if giving a lecture or bury their noses in the patient’s chart, are distant and closed, and often act put upon if the patient speaks or asks questions. In my experience, FOB’s can also possess outsize egos. However, they are also often brilliant doctors. They do not like dealing with patients, perhaps are insecure about it. It can be worth the effort to learn to deal with FOBs, however, as long as they are open to your questions and comments.
We can tell a lot about a person through eye contact. A good communicator makes frequent and direct eye contact with her listener. That eye contact is also engaged, i.e. focused on the listener and not staring, glassy-eyed.
Finally, a doctor who communicates well is an active listener. What is active listening?
This communication tool uses primarily the technique of repeating what was said back to the speaker but in the listener’s own words. Parroting word for word doesn’t show that the listener has really heard and understood what the speaker just said. Also, this repetition needs to occur at appropriate intervals rather than after each sentence. Constant interruption can defeat the whole purpose of active listening. Sit back, relax, and wait for a natural break before repeating back in your own words what you’ve just heard.
That relaxed attitude is also a part of active listening. The listener is patient with the speaker and gives the impression through body language that he has all the time in the world to listen to her. That attitude also includes an openness and non-judgmental facial expression. The listener is saying non-verbally that he is open to listening to whatever the speaker has to say, no matter what it is. The active listener is a respectful listener, treating the speaker with respect and interest. Maintaining eye contact demonstrates the listener’s total focus on the speaker. An active listener also asks relevant questions of the speaker, further demonstrating his complete engagement in the conversation.
For more information about active listening, the following links could be helpful:
Patients want their doctors to be excellent communicators. But there’s another person involved in this relationship: the patient.
Communication is a two-way process. It involves speaking and listening. The patient needs to hone his communication skills. When there’s effective communication occurring between patient and doctor, the patient benefits. Effective communication also supports a working partnership between the patient and the doctor. This partnership’s purpose is the treatment of the patient.
As a patient, how are your communication skills? What kind of listener are you?
It’s important to understand what the detective doctor needs from a patient. First, the patient’s medical history. This information is usually gathered during the patient’s first visit, but it will come up at times, especially if there’s been any changes in it. The medical history will include information about the patient’s immediate family, children, previous illness, surgeries, and if the patient has any allergies to drugs, latex, food, etc. At each appointment, the patient needs to bring his list of current medications, vitamins, herbal supplements and over-the-counter drugs. The doctor needs this list in order to be able to prescribe medication that won’t adversely interact with what the patient is already taking. Then, the doctor will want to know anything and everything about the physical symptoms that brought the patient to him: what are the symptoms? Please be as complete and descriptive as possible. When did they begin? How long do they last? What is their severity? How do they affect the patient’s life?
Patients sometimes feel that they don’t know how to talk to doctors, that they don’t have the medical knowledge or the vocabulary. Doctors don’t expect patients to have that knowledge and vocabulary. They expect patients to be themselves, to speak as they do normally. Think of it as sitting down with your mom and describing what’s going on with your body. Your mom won’t expect you to have medical knowledge. What is important is to be as complete as possible. It helps to write everything down and bring it to your appointment so you don’t forget anything. Another thing to remember is that something that doesn’t seem important to you, may actually be important to the doctor, so include everything related to your physical issue.
Although a patient isn’t expected to know already everything about his illness, the patient is the expert on his own body. The doctor knows that. She cannot do anything without the patient’s permission. This is where informed consent comes in. You, as the patient, need to be responsible and proactive about informing yourself, i.e. ask questions, write notes, be curious, and be open to learning. The more you learn, the better able you will be to take care of yourself.
So, in the exam room with the doctor, be an active listener. Ask questions. Bring paper and pen with you to take notes, especially about new treatments or procedures or medicines. Be patient with yourself and your doctor, and be yourself. Stay calm so you can focus and stay present. And be totally honest when answering the doctor’s questions.
Have You Been Listening to Your Body?
Another participant in the doctor-patient relationship is the patient’s body. Your body communicates with you all the time. It signals when it needs to be fed, and then when it has enough food. Your body lets you know when it’s “happy” and when it’s distressed. How does your body communicate that something is wrong?
- · Pain: a strong signal that something is wrong. Severe pain that doesn’t go away needs immediate medical attention.· Physical manifestations, e.g. rash, swelling.· Fever: this signal tells you that your immune system is fighting off an invader in the body. Extremely high fever that doesn’t break needs immediate medical attention.· Motor skill or senses failure: most often a signal of a neurological issue like a stroke. These symptoms often need immediate medical attention.· Expulsion: severe diarrhea or vomiting is extremely serious and needs immediate medical attention. You can become dangerously dehydrated.
When your body signals something’s wrong, how long does it take you to notice? And then how long does it take you to act? This is something you need to discuss with your doctor. I rely on my intuition which has never been wrong. I also have the belief that I’d rather be wrong than sorry. If you are not certain, call your doctor.
To be an effective advocate for myself, I've learned that I need to think of my relationship with my doctor as an equal, working partnership. We are in this together, helping each other, supporting each other, sharing what we know in order for me to take better care of myself. I am still learning....