Responses of Physicians
Families want physicians to provide skillful diagnosis and management plans for of chronic conditions.They expect the physician to support the patient and family and to be accessible, understanding, knowledgeable, kind, and empathetic. At the same time, physicians must carry on a busy practice and become neither discouraged nor tired. It would be rare for a person to possess all these qualities. High expectations from patients and their families, as well as from society, may cause physicians to react in several ways when dealing with a chronically ill patient.
ANXIETY
Physicians worry if their diagnosis is correct, if they are managing the patient well, whether they are meeting the family's needs, and whether they have communicated adequately with the patient and family.
Example: Dr. Cardona, a general pediatrician, sees a toddler with dysmorphic features and a normal genetic microarray. He believes the features are consistent with a genetic syndrome, of which about 30% have negative genetic testing. He counsels the family about the likely diagnosis. Later that evening, he worries about whether he should have sent the child to genetics to confirm the diagnosis and if his diagnosis was correct
HELPLESSNESS AND GUILT
It is easy for physicians to feel helpless when dealing with a chronic condition, especially if the prognosis is uncertain or poor, and/or if therapeutic measures are limited. Most physicians who care for children are accustomed to a healthy population whose illnesses respond quickly to treatment and are limited in duration. Because of expectations of our society, physicians sometimes wonder if they should have detected a chronic condition earlier or prevented it altogether.
Example: Dr. Barnes has been Julian's pediatrician for the last 5 years. Julian is a 16-year-old boy with muscular dystrophy who has experienced increasing numbers of respiratory illnesses and pneumonias over the last two years. Dr. Barnes always orders an x-ray and an antibiotic each time Julian has a cough "just to be sure."
DEPRESSION
After diagnosing a chronic condition with a poor prognosis, a physician might feel depressed. Occasionally, the family assigns blame to the physician for the condition, which can spur self-doubts regarding professional competency. Feelings of inadequacy arise when the physician falls short of whatever ideal image he or she has created to represent what it means to be a "good" doctor.
Example: Last week, Dr. Scott told his good friends and longtime patients, Bill and Judy, that their infant son has Spinal Muscular Atrophy, a progressive degenerative disease. Since then, he has called the family several times to check on them. He wonders if medicine was really a good career choice for him.
AVOIDANCE
When a patient's chronic condition becomes complicated or the child has reached the last stages of a fatal illness, physicians sometimes find it easier not to face the family or patient. Physicians might try to make rounds when they know the family might not be present. Particularly as a child's life draws to a close, teams designate one or two members to act as liaisons with the patient and their family. With very complicated patients, team members sometimes self-select who will be main points of contact as practitioners less comfortable with the situation respond less quickly. Overall willingness of the medical team to communicate with families of these children is frequently reduced compared to their similarly aged, healthy counterparts. The combination of medical team avoidance, possibility of parental anxiety, and actual increased health needs of children with chronic conditions results in parent(s) who appear demanding and unreasonable. These demands should be seen as a plea for help and can be a warning sign of ineffective communication from the medical team. Recognition of fears and feelings of helplessness are of great assistance to these families. Avoidance, on the other hand, can only enhance their sense of helplessness.
Example: A 12-year-old boy has been hospitalized with an inoperable brain tumor. His parents ask the nurses to check his intravenous fluid administration system frequently and often demand more pain medication. The nursing staff has begun to resent the family's demands. His physician is always busy when the parents call about pain medications.
ANGER AND RESENTMENT
Physicians and other team members caring for a child with a chronic condition might come to resent the demands placed on their time and energies by the parents. These telephone calls and other demands on a clinician, like paperwork and insurance clarification, for medical needs for these children are time-consuming. Parents learn quickly they must be the advocate for their child and therefore might telephone frequently about minor illness and other problems, often expecting immediate, personal attention regardless of the circumstances. The overall process sometimes results in feelings of anger or resentment of the patient and their families.
Agreement about expectations must be reached between parents and physician for a healthy relationship to be maintained. If open discussion is not attempted, anger and disappointment will only escalate as demands continue. This is in no one's best interest, especially the patient's, and usually leads to "doctor shopping."
Example: Mrs. Clark, whose daughter has asthma, has called each day this week because her child has a cough and runny nose. Dr. Johnson snaps angrily at his receptionist, "Does she think her daughter is my only patient?"
