Helping Families Deal With Chronic Disease.
Peter H. Schur, M.D.
Professor of Medicine
Physicians are becoming increasingly involved with patients with chronic illnesses, such as lupus. Chronic illnesses may affect the quality of life for many years and may prove fatal. Dealing with this chronic burden creates an extra stress load for the patient as well as the physician. In addition, the patient’s family is invariably also drawn into this circle.
Ideally, the physician will try to improve the patient’s medical condition, or at least stabilize it and/or prevent progression. In addition, the physician needs to help the patient deal with the illness—its chronicity, its affect on daily life, and the effects of medications. Life itself may begin to revolve around this chronic problem. There may be pain (and hopefully its relief), weight problems, special diets, fatigue, and disfigurement that the physician should help with.
The affect on Families
Whenever a patient becomes chronically ill, the family invariably gets involved. Happily, for most patients, the families are often very supportive and make adjustments in their lives to help the patient.
Unfortunately, the longer the disease continues, the more severe the disease becomes, and the more the severe effect on the ability of the patient to cope with daily living, the greater the stress is on the family. Each family and each member of each family reacts in different ways to chronic illness. Usually, we call this a grieving process; each person grieves in their own way.
This grieving reaction may result in sympathy, support, rejection, anger, guilt-and each at different times—and may manifest itself in different ways at different times. The resulting stressful family dynamic may make the patient feel even worse.
How can the physician help in these matters? First of all, the physician needs to get involved. This means helping the patient with the uncertainties of a chronic illness. It means providing medications for pain and developing a plan of how to cope with fatigue. It means sitting down and talking about diet and medications. It helps to put this advice in writing.
It also means listening to the patient and/or family members. Physicians involvement means a great deal to the patient and family. In addition to providing emotional support, the physician can suggest family meetings and even get involved with them to help resolve questions about specific therapies, limitations, complications, and ways to make life better. Often a patient needs professional help at home, a letter to an employer, help with getting disability, talking to social service about help at home, help with children. The physician may suggest to the patient to talk to a counselor.
Managed care puts great pressures on physicians and patients to resolve all issues in a few minutes. The reality is that the art of medicine, the listening, the caring, and the doing is more important and will have the greatest healing ability in the long run. Use time well.
Remember, that chronic diseases have ups and downs, and once one crisis is dealt with, another may develop. One learns to deal with problems one day at a time. However, one must be on guard regarding anticipatory anxiety about succeeding crises. The fear of another crisis can be devastating for the patient and the family. Best to deal with it up front and try by listening, talking and support to prevent this from snowballing.
The goal is to improve the patient‘s quality of life. Reaching that goal is a team effort from the patient, family, physician, and often others.
The work can be hard, but the end results justify the effort.