Our family friend called us after being discharged from a hospital. Since it was not the first time he got into the clinic we have asked what was wrong with him. ‘No idea,’ he replied proudly. ‘I specialize in history, not in medicine. Let doctors do their job’. He died shortly after in his lonely apartment not really knowing why. How could  an intelligent and educated person, the author of several books on American history, be so obstinately ignorant about his own health? In fact he did not even “own” it. He “delegated” his health matters to others he considered to be more knowledgeable and therefore responsible for mundane medical realities.

An acquainted physician once told me: people are ready to surf over the Internet to check on their health , but in case of a real pain they turn to the doctor. In desperation you are often tempted to believe in magic, with a doctor assuming the role of a magician.

The statement reminded me of the US psychiatrist Eric Berne  who had examined human interactions, or “transactions”, between a given person and other people. He distinguished three basic levels of personality manifested in human behavior: “parent”, “adult” and “child” and accordingly six (3´2) patterns of interpersonal communication, three main of them are: “adult-adult”, when people communicate on the same level of equality and reciprocal respect, acting in mutual interests; “parent – adult”, when one with the assumed authority provides comprehensive guidance to another and, finally, “parent – child” when the latter is submissively receiving orders from the allegedly authoritative person perceived as strong and senior.

One can extend this approach to healthcare. If you are in a hospital it is easy to spot three typical models of doctor-patient interactions: physician treats a completely obedient patient (parent –child); patient consciously follows the doctor’s instructions (parent – adult); and mutual cooperation, in which the physician negotiates a therapy plan with the patient (adult – adult).

Some of the studies indicate that the second (parent – adult) model is the most commonly used [1].

Today, patients are encouraged to change their behavior to be active partners to physicians, and the latter have to accept it. After all,  less active patients bear 21 percent higher costs than the active ones![2].

But are both parties ready? Mutual cooperation requires a big cultural change equally from patients and medical professionals. The perception that a “sick person is not responsible for their conditions and thus should be exempt from normal social roles” is historically rooted in the European mentality. The concept of the “universal sick role” created by American sociologist, Talcott Parsons postulates that a sick person should try to get well and seek a professional medical assistance, because she/he is incompetent to help himself.

One subject often found in studies of dependence is that the latter results in behavior which is beneficial for the party dependent upon i.e. in our case for the medical professionals and in many doctor-patient interactions is expected to lead to a priori, pre-emptive obedience. Let us also not forget, that a physician has an initial advantage compared to the patient. A hospital for a physician is a familiar working environment with the rules he/she is accustomed to. For a patient the whole situation getting to the hospital is a collapse of his everyday life.  He is overwhelmed by fears, doubts and uncertainties on top of that forced to endure unpleasant, often humiliating procedures.

The challenge starts with the mentality. We have to accept the fact that physicians and patients think differently. For a physician, especially in a large hospital, a patient is one of many. He has to go through multiple approved clinical procedures that are believed to work for many, but not necessarily for everybody. Patients have only one interest: to be healed. Each patient perceives himself as a unique entity and expects to be treated accordingly.

The next challenge is communication. Clinicians tend to presuppose that individuals understand, although not fully, their health issues. However, quite often patients are cautious to ask for clarifications, e.g., out of fear to look stupid or to irritate their doctors. This could drive misperceptions for both patients and clinicians. In a survey conducted by McKinsey, 76 percent of the participants with high-risk clinical conditions  nevertheless described themselves as being in excellent, very good, or good health. Maybe some of them  were misled by the desire to escape from the hospital as soon as possible!

Every hospital’s instructions postulate that a patient has the right to receive information in a form she/he understands. Doctors are suggested to ask polite questions in non-dominant tone such as “what do you think?” to verify patient’s understanding of the information received. But reality is often different. Lack of time, fatigue and frequent indifference do not allow physicians to spend as much time with a patient as needed.

There are still many examples when physicians instinctively do not want to brief patients with the required level of clarity while perceiving an intelligent, knowledgeable patient as a threat to their authority. Once I was observing a patient with a cardio failure who was curious about his ECG results. ‘You have to study for 6 years to understand it anyway,’ dropped the cardiologists. A patient, apparently a person with the university degree, remained silent. Yes, he did not study medicine, but for sure he was  capable to understand the interpretation of standard cardiographic signals.

Often patients who demand attention and clarifications are branded as “difficult”. Special “guidances” are designed to deal with them. Thus the Nursing Link provides some interesting suggestions. For instance, the instruction  standard rule states that a patient can approach the nurse only between definite hours and only at the nursing station. That should ensure that “patients don’t take the free for all approach.”

As patients we still need to learn how to establish active partnership with physicians to combat malpractices of our healthcare system. One can start with:

 Self -education. You may not get the same level of medical competence as your doctor, but you can understand your own illness. There is an abundance of knowledge scattered over the Web! Professional resources such as NHS Choices , Patient Care and Health Information from Mayo clinic  or  UpToDate Subscriptions for Patients and Caregivers could be helpful.

Use social network. There may be millions not exactly like you, but still going through similar experience. Think about online communities such as PatientsLikeMe or Ask a Patient or Health Treatment Web site to connect to these people.

Understand your rights. There is Patient’s Rights codex that every country has to respect. It is true that the knowledge of your rights does not always guarantee their implementation, since you are not always sure whom to complain to. Thus in Germany you can go to the chief medical doctor or write letters to a variety of medical authorities, but beware that all medical administrations will be against you, so prepare yourself for the court. It maybe easier in countries like Sweden. A patient can go to her/his municipality and complain to the person there responsible for the Patient Rights. There are Patients Associations in almost every country such as Patient Association UK or International Alliance of Patients Organizations  that are not always vocal, but still could be of use.

Prepare yourself for a conversation with your doctor. You do not have much time for one to one with your physician. So prepare your questions in advance based on the knowledge you have already acquired. Good if you could track your own health data or vital signs. Even if your physician does not trust such “personal data”, she/he still may look at the graphs. There are number of free apps to track your blood pressure, glucose level or heart rate. Online platforms like Health Vault or Health Kit will help you to accumulate the data and share information with your  physician.

 Stop feeling yourself small. Remember that hospitals and healthcare are not for physicians, it is for patients i.e. for you. People who have courage to demand their rights are often getting better services, compared to those who meekly accept what is given. A reluctantly disclosed secret from NHS is that “patients who complain get better care”.

New technologies like smartphones and tablets allow people to get a better control and understanding of their health conditions. But, finally, it is our own determination and choice if we want to do it or grant this role to someone who claims to be professional but can be indifferent to us as a person.

As a patient and individual you deserve care and respect. Respect often is not  given for  granted. So rephrasing a famous poet, be not  like “a driven cattle, be a hero in the strife” !

References:

1. Szasz T, Hollender M. A contribution to the philosophy of medicine: the basic models of the doctor-patient relationship. Arch. Intern. Med., 1956; 97:585-92.
2. Commonwealth study