part0010

To practice patient-centered medicine, clinicians must explore three interrelated concepts: health, disease and illness. Effective patient care requires attending as much to patients’ perceptions of health and personal experiences of illness as to their disease. Disease is diagnosed by using the conventional medical model, but understanding health and illness requires a different approach. Disease is diagnosed by objective observation; it is a category; the “thing„ that is wrong with the body-as-machine or the mind-as-computer. Disease is a theoretical construct or abstraction by which physicians attempt to explain patients’ problems in terms of abnormalities of structure and/or function of body organs and systems; it includes both physical and mental disorders. Illness, for its part, is the patient’s personal and subjective experience of sickness; the feelings, thoughts and altered behavior of someone who feels sick. Health perceptions, for their part, are the person’s sense of his or her own health and the benefits and barriers to it.

In the biomedical model, sickness is explained in terms of pathophysiology: abnormal structure and function of tissues and organs. This model is a conceptual framework for understanding the biological dimensions of sickness by reducing sickness to disease. The focus is on the body, not the person. A particular disease is what everyone with that disease has in common, but the health perceptions and illness experiences of each person are unique. Disease and illness do not always coexist; health and disease are not always mutually exclusive. Patients with undiagnosed, asymptomatic disease perceive themselves to be healthy and do not feel ill; people who are grieving or worried may feel ill but have no disease. Patients and doctors who recognize these distinctions and who realize how common it is to perceive a loss of health or feel ill and yet have no disease are less likely to search needlessly for pathology. However, even when disease is present, it may not adequately explain the patient’s suffering, since the amount of distress a patient experiences refers not only to the amount of tissue damage but to the personal meaning of health and illness.

Several authors have described these same interrelated concepts of health, disease and illness from different perspectives. In analyzing medical interviews, Mishler (1984) identifies contrasting voices: the voice of medicine and the voice of the lifeworld. The voice of medicine promotes a scientific, detached attitude and uses questions such as: “Where does it hurt? When did it start? How long does it last? What makes it better or worse?„ The voice of the lifeworld, on the other hand, reflects a “common-sense„ view of the world. It centers on the individual’s particular social context, the meaning of health and illness, and how they may affect the achievement of personal health goals. Typical questions to explore the lifeworld include: “How would you describe your health? What are you most concerned about? How does your loss of health disrupt your life? What do you think it is? How do you make sense of what has happened to you? How do you think I can help you?„

We propose four dimensions of the illness experience that physicians should explore: patients’ feelings, especially their fears, about their problems; their ideas about what is wrong; the effect of the illness on their functioning; and their expectations of the clinician.

What are the patients’ feelings Do they fear that the symptoms they present may be the precursor of a more serious problem such as cancer? Some patients may feel a sense of relief and view the illness as an opportunity for relief from demands or responsibilities. Patients often feel irritated or culpable about being ill.

What are the patients’ ideas about their illness? On one level the patients’ ideas may be straightforward, e.g. “I wonder if these headaches could be migraine headaches.„ But at a deeper level patients may struggle to find the meaning of their illness experience. Many persons face illness as an irreparable loss; others may view it as an opportunity to gain valuable insight into their life experience. Is the illness seen as a form of punishment, or perhaps as an opportunity for dependency? Whatever the illness, knowing its meaning is significant for understanding the patient.

What are the effects of the illness on function ? Does it limit patients’ daily activities? Does it impair their family relationships? Does it require a change in lifestyle? Does it compromise their quality of life? Does the patient see any connection between his headaches and the guilty feelings he has been struggling with?

What are their expectations of the doctor? Does the presentation of a sore throat carry with it an expectation of an antibiotic? Do they want the doctor to take action or just listen? In a review and synthesis of the literature on patient expectations of the consultation, Thorsen et al. (2001) provide a further conceptualization of patients’ expectations of the visit. They suggest that patients may come to a doctor visit with “a priori wishes and hopes for specific process and outcome„ (p. 638). At times these expectations may not be explicit and, in fact, patients may modify or change their expectations during the course of the consultation.

The following examples of patient-clinician dialogue contain specific questions that physicians might ask to elicit this information.

To the doctor’s question, “What brings you today?„ a patient responds, “I’ve had these nagging headaches for the last few weeks. I’m wondering if there is something that I can do about them.„ The patient’s feelings about the headaches can be elicited by questions such as: “What are your concerns about the headaches? Do you think that something specific is causing the pain? Is there something particularly worrisome for you about these headaches?„

To examine the patient’s ideas about the headaches, the physician might ask (waiting after each question for the patient’s reply): “What do you think is causing the pain? Have you any ideas or theories about why you might be having them? Do you think there is any relationship between your headaches and your current life situation? Most patients try to understand their problems on their own before coming to see me – by talking with family members or searching the Internet. Have you found out anything that you are wondering about?„

To determine how the headaches may be impeding the patient’s function, the doctor might ask: “How are your headaches affecting your day-to-day living? Are they stopping you from participating in any activities? Is there any connection between your headaches and the way your life is going?„

Finally, to identify this particular patient’s expectations of the physician at this visit, the doctor might inquire, “What do you think would help you to deal with these headaches? Is there some specific treatment that you want for your pain? In what way may I help you? Have you a particular test in mind? What do you think would reassure you about these headaches? Are you interested in medication for your headaches or do you primarily want to make sure they are not caused by something serious?„

Certain illnesses or events in the lives of individuals may cause them embarrassment or emotional discomfort. As a result, patients may not always feel at ease with themselves or their physician and may cloak their primary concerns in a myriad of symptoms. The doctor must, on occasion, respond to each of these symptoms to create an environment in which patients may feel more trusting and comfortable about exposing their concerns. Often, the doctor will provide them with an avenue to express their feelings by commenting: “I sense that there is something troubling you or something more is going on. How can I help you with that?„ Finally, identifying the key questions to be asked should not be taken lightly. Malterud (1994), in describing a method for clinicians to formulate and evaluate the wording of key questions, emphasizes that the wording of questions should be comfortable for the doctor and suited to the patient’s context.

In general, patients’ definitions of health undoubtedly influence their life and their care. Also, the providers’ definition of health, and their role in promoting health, inevitably permeates the care offered. Just as understanding the illness experience requires inquiry into feelings, ideas, effect on function and expectations, so too do health promotion and disease prevention strategies that are patient-centered. This includes an exploration of the individual’s self-perceived health, perceptions of his or her susceptibility and seriousness of the disease, ideas about health promotion, and finally the perceived benefits and barriers to health promotion and prevention.

To practice patient-centered care, clinicians must think about the different conceptualizations of health as well as understand the patient’s understanding (way of defining) health for him- or herself. Historically there have been three conceptualizations of health: 1) health has been understood to mean the absence of disease, and this meaning holds true within the biomedical model of clinical practice today; 2) in 1940, the World Health Organization (WHO 1986) defined health as “a state of complete mental, social and physical well-being, not merely the absence of disease and infirmity„ ; and 3) in 1986, the World Health Organization (WHO 1986) redefined health as “a resource for everyday life, not the objective of living,„ a concept of health that emphasizes social and personal resources as well as physical capacities .

Thus, the notion of health has shifted from its former abstract focus on physical, and then physical, mental and social status, toward “an ecological understanding of the interaction between individuals and their social and physical environment„ (de Leeuw 1989; Hurowitz 1993; Stachtchenko and Jenicek 1990). While the earlier definitions direct attention to objective factual data, the most recent definition directs attention to the subjective and intersubjective experience and enactment of health. How patients and practitioners think about and, therefore, experience health continues to evolve. In fact, all partners in health care have unique and often differing understandings of health, and in turn, different understandings of health promotion and disease prevention to contribute to these aspects of health care.

In summary, the more favorable the patient’s potential for health, particularly as it relates to self-efficacy and health status, the more appropriate the practitioner’s role as facilitator of health enhancement and educator regarding risk avoidance. The less favorable the patient’s potential for health, the more appropriate professional intervention will be with risk reduction and early identification strategies. Therefore, in disease prevention, as with health promotion, the practitioner’s explicit recommendation is key. After that, understanding the patients’ definition of health, their beliefs and attitudes and their past experiences will help the practitioner enhance health-promoting and disease-preventing behaviors (Pullen et al . 2001).

The first component of the patient-centered clinical method is the exploration of the patient’s health, disease and unique illness experience. These three concepts can be considered individually or in various combinations, as they overlap with one another. In particular, it is important to elicit the four dimensions of the patient’s illness experiences: their feelings, ideas, impact on function and expectations.

The following narratives illustrate how doctors explore the health, disease and unique illness experience of their patients.

We begin with a story depicting an individual suffering from symptoms that defy diagnosis. Failure to provide a label or diagnosis can be emotionally wearing for patients and cause undue suffering. Recognition of their illness experience and validation that their symptoms are real can be therapeutic and foster healthy coping.

In the second story, Chapter 2 , we encounter a young woman transitioning from adolescence to adulthood. While she has escaped the terror of her war-torn country, she cannot evade the all-encompassing sorrow of her illness experience and the disease that will take her life away.

Chapter 3 serves as an example of how we often struggle to make sense of the patient’s illness experience – it is often hidden under an emotional ice pack with layers depicting a complicated history and its subtle nuances. Perhaps we cannot penetrate this solid stance or enter this frozen zone but only respect and accept the patient’s choices.

The fourth story, Chapter 4 , recounts the narrative of a young man who perceives himself as both healthy and a “rising star„ in his work life. Yet, he is plagued by a family legacy of depression, which shatters his self-esteem and his perception of his health. While the onset of depression threatens his equilibrium, the clinician assists him in not only accepting the diagnosis but in making sense of his illness experience and ultimately regaining a sense of health.

Living with a chronic illness can be emotionally wearing, as the Chapter 5 narrative reveals. First, one must come to terms with the diagnosis and adjust life accordingly. But new opportunities and hopes for the future can be threatened by an exacerbation of the disease process. A patient-centered approach attends to the shifts and changes that are experienced by patients living with a chronic disease.

Sometimes an accidental event can uncover an incidental finding, as Chapter 6 portrays. This narrative also underscores how one simple, and seemingly benign, life event can become an icon in the patient’s illness experience.

The seventh and eighth narratives ( Chapter 7 and Chapter 8 ) are similar in that both patients are confronted by a terminal disease. But for each individual, their illness experience is unique: one is a young mother, whose cancer will deprive her of the opportunity to witness the growth of her young children; for the other woman, her rare disease shatters the relative “common„ and gentle world in which she has existed.

The final two narratives, Chapter 9 and Chapter 10 , demonstrate how two women suffer the same acute injury, a Colles’ fracture of their left arm. One woman is 19 years of age, the other is 70. While their diagnosis and subsequent treatment are identical, their illness experiences are radically different. Their individual stories reveal how they exist in different worlds, and decades far apart, despite the shared diagnosis. These narratives serve as a transition to the next component of the patient-centered clinical method –understanding the whole person.