Maintaining Wellness

At the same time, lifelong healthiness is not a goal completely within an individual’s own control, even with the help of a safe and health-inducing environment. Almost weekly there are discoveries of new genetic predispositions to illness; scientists have identified scores of environmental toxins, and other health hazards are appearing on the horizon; many people live in conditions of poverty, lacking basic public health and safety conditions, while others suffer unavoidable work-related stress symptoms. Accidents and other misfortunes dash dreams, alter possibilities, and modify relationships. Moreover, most of us today have periods of less wellness or more wellness. For example, a person with mild pneumonia or late-onset diabetes or severe atherosclerotic heart disease may function mostly as a healthy person but still may need health care for serious symptoms related to the condition. At best, each of us moves through life on a continuum between maximal health and life-threatening illness or death.

Respect for Patient’s Health-Related Changes

The transition from being relatively well to becoming ill or impaired almost inevitably entails change in the form of losses. The loss may take the shape of decreased physical or mental function, as reflected in this excerpt from a young woman who has been working energetically to recover from stroke and then “bottoms out”:

Ultimately one cannot predict how a patient will respond. Experience of the significance of the loss is highly personal. Sometimes it is completely understandable to others. The concert pianist who loses an index finger in an accident will experience it as a more profound loss than most of us who might experience a similar trauma. Other times the effect on the patient baffles everyone. Patients will react to you in ways that express their concern about their losses. For example, upon entering a patient’s room, the phlebotomist may catch the brunt of the patient’s anxiety through comments such as, “Here comes the vampire!” The radiological technologist may be accused of destroying cells with the imaging equipment. Professionals whose diagnostic and treatment procedures require patients to engage in physical or emotional exertion can be accused of sapping a patient’s strength. These expressions of anger or fear reflect the challenge a patient is facing in trying to protect his or her body and sense of well-being from further loss.

Respect for Necessary Changes in Patients’ Values

In addition to being able to identify one’s own and others’ values, it is imperative to recognize that everyone’s values change from time to time. The circumstances that force or enable most people to change their values usually evolve slowly, whereas those that force a patient to do so may appear in a matter of minutes or hours! Illness or injury almost always causes a patient’s and their loved ones concern about whether and how the person’s values will have to change.

The course of one patient’s evolving values is reflected in her response to her condition:

What types of values might Daniela have that would allow her to feel as if there is “much to live for” when so much has radically changed in her life?

The process of reclaiming and replacing values may take weeks, months, or years for any of us. The person who becomes a patient must learn what the illness or injury really means in terms of long-term impairment. Another woman who, like Daniela, had multiple sclerosis told one of the authors that it took her years to stop doing silly things that overstressed her. She said, “It was because I didn’t know my disease; now I know it, like a friend, strange as that may sound. Not knowing was the hardest part . . . ”

Institutionalized Settings

Although not all people who become ill or injured spend time in hospitals or other health care institutions, the most seriously involved are admitted as inpatients. Inpatient is a term applied to those who enter a health care facility to remain there for a period of time.

The necessity of spending time confined in a health care facility may significantly disrupt an individual’s personal life, as well as the lives of family, occupational associates, and friends. The challenges associated with the disruption may be primarily social, but it is likely that they will also be economic, owing to loss of work, health care–related expenses, or both. The economic burden is especially acute for a person who is self-supporting or is the breadwinner in a family. A single parent has the burden of finding and paying for suitable caretakers for children. A child, teenager, or other student loses valuable instruction and may fall behind or have to drop out of school. A professional person may have to forego participation in an important project. Whatever the individual’s personal responsibilities, he or she is likely to be affected socially and economically.

Psychological stresses compound the social and economic ones. A person often believes that entering an institution for care signals that he or she is not winning the battle of coping with an illness or impairment. This psychological defeat can be as deleterious to his or her welfare as the physical manifestations of the illness itself. In submitting to confinement in an institution, the person finally is admitting openly that the problem is “out of control” and that people professionally qualified to provide certain services are needed on a continuous basis. The patient understandably is anxious about leaving his or her health, and perhaps life, in the hands of strangers but judges that there are no other good alternatives. Sometimes the awareness that the institutionalization took place because of severe stress on family and other caregivers adds to the discouragement.