The burden of not knowing

Beverley Smith

Family doctors know a lot. That is what my patients tell me. Some of the specialists I know tell me the same thing. “You must know a lot because you see so much,” they say. And maybe they’re right. But it is the burden of what we do not know that is so hard. And the burden of what we do not know comes in many forms.

First, there’s the uncertainty of clinical diagnosis: does the patient with severe sinus pain have a bad cold or a tumour? Is the shortness of breath in an elderly man due to his chronic obstructive pulmonary disease, his bronchogenic carcinoma, or his coronary artery disease? Does the child with a fever have a viral illness or a developing sepsis? Most of the time, family physicians live with this uncertainty, and we forget that specialists do not put up with the same degree of uncertainty. If we gave uncertainty more thought, however, we might have sleepless nights or even consider a different profession.

Second, there’s not knowing how your patients are going to respond to your advice or what recommendations they will choose to follow. They might decide to change their lifestyle and manage their diabetes, or they might not. They might take prescribed medication, or they might not. Arguably, family doctors have to live with the unknown more than specialists do because our patients keep coming back. We have to deal with the results of their choices, to pick up the pieces if their choices are bad ones, and to comfort their families if they die early as a result of the choices they have made.

Getting the help patients need

One of the greatest burdens family physicians face is not knowing how the system will serve their patients. This burden was vividly illustrated for me by a patient who came to our teaching unit a few years ago. Alyssa was 19 years old and still living with her parents. She could not understand why she trembled every time she had an argument with her alcoholic father. She told me she felt like tearing her hair out and screaming. She could not handle the confrontations. After some gentle probing, she admitted she had been abused by her father and that her broken cheekbone a few months before her visit had not been accidental. In the 45 minutes allotted to her, she poured out her fears and her anger.

We made sure she was safe and then proceeded to connect her with a service to help her get the counseling she needed. We tried the adolescent programs: she was too old. We tried the mental health department: she was not sick. We tried the local women’s shelter: they did not help people who were not living at the centre. The sexual assault care centre was also inappropriate. She could not afford a psychologist. Psychiatrists were impossible to access. By the end of the afternoon, the resident, the nurse, and I had been turned down by more services than we could count.

At the end of the day, it was not Alyssa’s poignant story that weighed on us so heavily. It was not even her current state, tragic though her life was. We knew she had come a long way in revealing to us her secret pain; we knew she had a good prognosis if she continued to deal with her life’s problems in the courageous way she had been confronting them; we knew her father was already in counseling and attending Alcoholics Anonymous; and we had her promise to return to our office.

No, the burden we had to bear was different. It was our own. It was the burden of not knowing whether a fragile girl with massive challenges and developmental hurdles would get the help she needed. It was the burden of not knowing whether the system would serve her well, if at all, despite our efforts.

Trapeze artists

Some days it feels as though we are trapeze artists, flinging our patients to be caught by someone else on the other side of the ring. And not knowing whether they will be caught by a compassionate assistant or dropped is, understandably, a burden difficult to bear. But then, perhaps, if we can still feel that burden it means we are not just referral brokers out for our take. Perhaps it means we are still, in our own way, being true to the principles of family medicine, still worshipping at the heart of our discipline. And that kind of burden cannot be all bad.