Patient Focus

To look at, listen to, help and heal a sick person we need a good patient-doctor relationship (1). This also provides a basis for the various questions that patients may want to ask in the context of their (serious or chronic) illness. Four questions are essential (2, 3, 4):

• What do I have?
• How can I get well?
• What is the relationship between my illness and my mental state?
• Why me? The biographical context and finding meaning in an illness

“What do I have?”

A first set of questions concerns the level of medical findings. If gallstones are diagnosed, for example, the patient’s questions will focus on the therapeutic procedures that may be suitable for correcting those findings. Similar questions may arise in connection with coronary heart disease, for example, concerning a possibly necessary angioplasty of a constricted vessel. The need for therapeutic intervention is derived from the findings. This approach makes the disease and its symptoms appear to the patient to be something “external” that requires symptomatic therapy. This is often understood by patients to be a “contract service” provided by the medical profession. A diseased hip joint calls for an endoprosthesis, blood sugar has to be adjusted close to normal values. The person’s own contribution to regaining health is in the background on this level.

“How can I get well?”

In addition to such findings-oriented questions, others relate to the process of falling ill and recovering. For example, rheumatism patients may soon notice how corticoid treatment or the introduction of basic therapy brings impressive improvement of their symptoms, without influencing the quality of the underlying disease process. Discontinuing the medication usually leads to a new manifestation of the disease. Process-oriented patient questions now turn to therapeutic options that can support the person in getting well. These questions are often based on a search for treatment that follows a salutogenic concept. Against this background, health does not appear to be the opposite of illness. Rather, it results from the activity of healthy forces in the organism which counteract disease-generating (pathogenetic) ones. In this sense, inflammation that occurs as the organism’s reaction to an embedded splinter is understood to be a healthy reaction that is designed to restore the integrity of the organism, despite the pain and impairment of well-being that it causes. Health appears as a middle quality in the field of tension between pathogenetic and salutogenic factors. The current widespread interest in integrative or complementary medicine does not arise from undifferentiated sympathy with everything “natural”. It is based on questions that people have about salutogenic treatment options. Contemporary medicine is experienced as a kind of “intervention medicine”, which influences and standardizes pathophysiologically relevant parameters by means of medication or medical equipment, without providing therapeutic support for the patient’s own salutogenic resources. As beneficial as the interventional possibilities of medicine may be, they clearly refer only to the findings-oriented level of patient questions and leave blank the possibilities for needed salutogenic treatment.

What is the relationship between the patient’s disease and his or her mental state?

A third form of patient question refers to the psychological dimension and is therefore not oriented to the findings, but to the patient’s well-being. Patients ask about the relationship between their mental state and the disease process. Neurodermatitis patients experience impressive changes in the condition of their skin depending on the level of stress that they are experiencing. The skin in its diseased state appears as a mirror of the soul. Clinically significant interactions between mental states and cardiovascular diseases are now well documented and have relevant consequences for therapy. Patient questions regarding these matters call for the inclusion of this soul level in the treatment process.

“Why me?” The biographical context and finding meaning in an illness

Finally, a fourth level points to meaning in illness. Suffering without meaning or without finding meaning offers no perspective and is not bearable. The desire for active euthanasia expressed by patients in palliative care has less to do with clinical symptoms that cannot be influenced than with a perceived loss of meaning. The desire to die arises as soon as someone sees no perspective for the future.
The question of meaning in illness, which can be existential not just for young cancer patients and is often the spiritual background for worry, hopelessness and depression, is not only about finding meaning, it is about creating it. Patients sometimes embark upon new developments in their relationships, discover different competencies and abilities, or find their way to new – also spiritual – experiences and perspectives. In palliative and hospice patient care, we are often surprised by new thoughts, values and goals of patients, which take on meaning for them in this advanced stage of their illness and which allow them to recognize and discover previously unsuspected meaning.

When the illness is not experienced as a “dysfunction” but rather as something connected with one’s individual development, numerous questions may arise regarding its biographical context. The person’s biography does not appear as an accidental collection of individual life events and diseases, it rather takes on a compositional form. Diseases have their place in this composition. The symmetrical distribution of many diseases is well known, such as rickets in childhood and osteoporosis in the elderly, asthma in the young and chronic obstructive pulmonary disease (COPD) in the elderly, diabetes mellitus type 1 in the young and type 2 in the adult. Inflammatory illnesses predominate in childhood, which is the time of “arriving in life” on the level of soul and spirit. Sclerotic and degenerative illnesses predominate in old age, which is a time of “withdrawing” the soul and spirit again. Other questions arise from such compositional contexts in biographies: what significance do inflammatory diseases have for the later stages of life? Can febrile diseases prevent the sclerosis of old age and are they therefore to be treated in way that allows them to finish healing, rather than only suppressing them?

There are thus four areas of patient expectations that determine doctor-patient relationships (5)

• Expectations based on findings
• Expectations based on processes
• Expectations based on the patient’s well-being
• Expectations based on the patient’s biography