A 55-year-old patient who is the mother of six grown children uses alcohol to soothe herself and seems generally annoyed. She has been my patient for 15 years but has never expressed any warmth toward me. She only allows minimal care, has told me little about herself and has refused all tests except blood work. Her primary symptom has been fatigue. She smokes two packs of cigarettes a day and eats only one small meal. She has looked cachectic all the time I have known her.
About two years ago, she came into my office with myalgias, fever and nausea. The only abnormalities I found were elevated white blood cell count and liver enzymes. A hepatitis panel showed old hepatitis A infection. I insisted she have a chest radiograph, ultrasound examination of the abdomen and mammography. She reluctantly agreed to these tests. An abdominal lesion was seen on the ultrasound scan; she then underwent computed tomographic (CT) scanning. The reading was “probable hemangioma,” but the patient refused a follow-up magnetic resonance image (MRI). By this time, she felt better and the liver enzymes had returned to almost normal.
Last year, she came in for a routine Papanicolaou smear, at which time she reported dry, itchy skin without a rash. On examination she was found to be icteric. Her bilirubin level was 5.9 mg per dL (100 μmol per L). An MRI led to the diagnosis of cholangiocarcinoma, and at laparoscopy the entire peritoneum was found to be seeded.
Now the patient and most of her family blame me for her condition and will not talk to me. Her husband is the only family member who maintains contact, and the rest of the family criticize him for being “nice” to me. He tells them this is not a good time to change physicians because his wife needs referrals. I know the patient is suffering and angry. I sincerely want to help her through this, but she will not talk to anyone and will not consider hospice care.
What is my responsibility? How can I get past fearing a lawsuit? Is there anything I can do for the patient and her family, or should I just continue writing referrals and talking to her husband, who is beginning to fall apart?
Our colleague faces the situation of having evaluated a patient with diffuse myalgias, fever and nausea. After finding evidence of liver damage and an abnormal CT scan, the patient refused an appropriately recommended MRI, resulting in a delay of the diagnosis of cholangiocarcinoma. The physician is blamed by the patient who, along with most family members, refuses to see him. The patient's husband continues to see the physician to obtain sub-specialty referrals for his wife.
My suggestion for the best way to help the patient and her family is to identify and explore the complex emotions and interpersonal dynamics as they affect the physician, the patient and her husband, and to base future interventions on that assessment.
The family physician fears a lawsuit and is also concerned about the patient and her husband. Fortunately, a lawsuit appears to be unlikely as long as the physician maintains a supportive relationship with the patient's husband. Furthermore, the probability of a successful lawsuit, in any event, is low as long as the patient's chart documents her decision not to undergo the recommended MRI at the time of the initial presentation. This case reminds us all of the importance of documenting prospectively the complexities of our decision-making process with regard to our patients.
This physician must feel anger and hurt at being attacked and rejected by a patient of 15 years. Either or both of these emotions may rekindle similar feelings remaining from childhood, or from other professional or interpersonal experiences (counter-transference.) Our emotional responses, like those of our patients, are frequently multiple and, at times, conflicting. If we do not explore the full range of our feelings, our ambivalence may adversely influence our verbal or nonverbal interactions with our patients. However, in this case, I would not recommend expressing these feelings directly to the patient or her family. (Consider self-disclosure only when it will directly help the patient with an existing problem.) I would suggest instead talking about these feelings with a friend or colleague before attempting any discussion with the family.
Consider, too, the patient's husband, who is described as “beginning to fall apart.” Like the physician, his situation, including the contentious continued visits, is likely to reflect complex feelings and relationships. The physician should help him explore what he finds emotionally most difficult and stressful. The physician should not get caught in the trap of assuming that he understands what the patient is going through. Factors contributing to the husband's emotional state may include fear of losing his wife and anger he may feel toward her, either for past problems in their relationship or for her refusal to accept appropriate evaluation at an earlier stage. Helping the husband appreciate his mixed feelings will allow the physician to develop the most appropriate plan for the future.
The ongoing visits by the husband can be appreciated on many levels. At the most basic level, he is probably looking for the kind of support that is best offered by a “complete” family physician. While it may be flattering that the patient's husband would continue to seek support, it is important to realize that such visits may create or reflect a triangular dynamic in which the patient's husband and the physician may be, or may be perceived by the wife to be, at odds with her. The physician should investigate how the husband reacts to such a high-tension situation by using a statement like, “What's it like going through this situation with your wife and, at the same time, continuing to see me for help?” The physician should listen carefully and summarize the husband's response. He should, of course, follow up with additional statements like, “I suspect you might have some other feelings—ones that may even be hard to talk or think about.” By consciously and explicitly addressing the meaning of the dynamic relationship between the patient, her husband and himself, the physician will minimize the chances that he or the husband will unintentionally create problems in this relationship or future family-health care provider relationships.
In considering the woman's situation, the physician is not able to know her real feelings because of her refusal to see him. She is angry with the physician and, perhaps, with her husband for continuing to see him. Does she perceive that her husband, in continuing to see the doctor, is blaming her for any of her past behaviors? Does she perceive her husband's behavior as disloyal to her? She very likely may be in denial about her prognosis because the physician suggested hospice but she refused. In her state of denial, she may interpret an offer for hospice care, no matter how objectively appropriate, as a statement that the physician has given up on her. On the other hand, rejecting help and becoming angry with authority figures may be her characterologic response. It is impossible to know.
To be able to help her at this time, it will be necessary to work through her husband. The physician can suggest that the husband first share his own complex feelings with his wife. This might encourage her to express her feelings. The husband should be cautioned that, for some people, the very thought of consciously considering their feelings raises their anxiety to such a high level that further emotional shutdown may occur. While it is possible to open the door to addressing feelings, it is neither possible nor appropriate to push someone through it.1 In this kind of situation, reframing may be useful. One way to reframe is to describe some conflictual behavior or position in terms of an underlying interest or concern; for example, by exploring through the husband whether her anger may be an expression of her fears of dying, of loss of control or of overwhelming pain.2,3 If this appears to be so, the physician can care for these concerns, and some of the inappropriate anger may diminish.
The physician in this case scenario asks if it is appropriate for him to try to see this patient who has cancer. It seems appropriate for the physician to express his concerns for her by asking about her at each of the husband's visits. A physician should not be pushed into a noncaring posture by the anger or rejection of patients. I would not suggest that the physician push for a meeting while the patient is still experiencing strong aversive feelings. If the physician continues to express interest in her well-being, the woman may eventually seek help from the physician on her own terms.
Another consideration that could alter the present dynamics is to have the woman and her husband see one of the physician's respected primary care colleagues. If the patient's husband was open to this possibility, it would be worth exploring further. However, the physician's suggestion may be interpreted by the husband as being nonsupportive or uninterested. The physician may, however, want to encourage him to attend his wife's visits to the oncologist.
Situations like this one remind us of the founding principles of our specialty. First, dealing with the whole person means addressing feelings, especially when they are negative and uncomfortable. Second, calling ourselves family physicians commits us to attempt to appreciate the impact a major illness has on a family system and to remember that we are included in each family system as a significant player. We can be triangulated into family situations as readily as any other family member can be, and the implications of our behaviors on family decisions have to be considered. Finally, a situation such as this one challenges us to struggle with accepting our own limitations with regard to changing others. While many valuable expressions exist about the importance of dealing with reality on its own terms, one that always stays with me is the late Gabriel Smikstein's admonition to “do the best you can with what you have.” We must strive to give our patients excellent care but, at the same time, we must understand our limitations and those of our patients.