“Please hurry my test results. This is very important information for me.” It makes me wince every time I hear it. And genetic counselors hear it often. There are times when I don’t want to answer my phone because I know it is going to be that patient calling yet again, or the spouse, or the physician, demanding Results! NOW! The request is perfectly understandable. The patient is drowning in anxiety, desperate for a lifesaver. Sanity overboard! Please rescue me from this turbulent sea and please, please do it before I go under. Some desperate patients have even offered cash under the table to grease the wheels. Your heart goes out to them and you want to do whatever is superhumanly possible to help. It wreaks havoc on a genetic counselor’s compassion center.
How should we respond to such pleas? There is the standard reply “Your results are critical and we will do everything possible to ensure that you receive them as soon as possible.” But that response begs more questions – How quickly will the results come back? What concrete steps will you take to ensure that happens? Who decides?
To a large extent, turnaround times are dictated by factors beyond anyone’s control. Cultured cells grow at their own rates, no matter how much voodoo powder we sprinkle into the culture medium or whatever sacrifices we make to propitiate Anaphasia, the goddess of mitosis (I swear that culture times are directly proportional to patient anxiety – the greater the anxiety, the longer the culture time). Amniotic fluid cultures are forever generating random Insane Clone Posses, which prolongs analysis time. New technologies like NextGen sequencing often identify unusual variants that need to be sorted through before deciding if they are the real deal or not. Thus, suggesting to patients that we will hurry their results is being dishonest when we know full well that we have limited control over the process.
And don’t get me started on giving preliminary results to a patient. This should just about never be done. There are good reasons why labs don’t call out results until they have been thoroughly checked and rechecked. Anything less than an absolutely certain result does not do patients any favors whatsoever. A rushed result is a useless result, and only gets you a reservation at Heartbreak Hotel. “Uh, did I say that preliminary result was normal? Well, um, now that we have completed the analysis….”
But in some situations it is possible to nudge along a test result. Usually this means analyzing the sample out of sequence. Instead of First Come, First Served, it’s Most Anxious, First Served. So who is Rush Worthy?
There are a few situations wherein most of us would agree that speed if of the essence, where a matter of days is critical. A patient who has a highly suspicious ultrasound and undergoes amnio at 20 weeks or later, awfully close to the 24 week termination cutoff for a patient considering this option. Patients with a history of suicide attempts or suicidal ideation. In the NICU, on a case by case basis. In oncology, perhaps patients with cancer who are trying to make treatment decisions like mastectomy or colectomy deserve some precedence over unaffected patients for whom surgical time pressures are less critical. But even there, which woman with breast cancer is more important than the others? Just about every patient wants that cancer out yesterday, even though for most patients waiting several weeks or more doesn’t change prognosis. Should the criterion be clinical stage? Nottingham score? High grade vs. low grade DCIS? Triple negatives? Trying to figure this out, as Rev Tevye sings, “would cross a rabbi’s eyes.”
There are some cases where it is never ethical to leapfrog the results line. Putting a co-worker, friend, or relative at the head of the queue. Giving special consideration to celebrities, physicians or their spouses, politicians, or people of great wealth or power. The patient going on vacation and who would like results back soon so that the vacation “can be enjoyed.” Labs offering to charge more in return for a quicker turn around time (unless it was ethically justifiable in a particular situation and it resulted in extra lab costs). Wrong, wrong, wrong, wrong. Always.
Really, though, ethical justification for analyzing a patient’s sample out of sequence is a rara avis. Yes, a patient may be trying to make an important decision, but just about every genetics patient is trying to make a life-altering choice. Yes, a patient may be terribly anxious, but why and how should anxiety be given ethical weight? Lots of patients are anxious. It is impossible to say which patients are more “deserving” based on anxiety. And why should calm people be penalized for not expressing anxiety? (God bless them, though, for their serenity).
Communicating this to patients is difficult, to put it mildly. You don’t want to sound cold-hearted and insensitive and just say “No, sorry, can’t do that.” The wise counselor will try to validate patient anxiety, encourage them to express it, and emphasize that the lab will do everything ethically and humanly possible to provide an accurate (emphasis on accurate; rush = greater inaccuracy) and timely result. Providing assurance that they will be contacted as soon as the result is complete, working out the details of who and when to call, and verifying contact information shows that you are concerned and supportive. Set realistic expectations on the range and uncertainty of the turn around time and explain that rushing results is largely beyond human control. It can sometimes be helpful to put the situation in context – there are many men or women in their exact same position and the lab is doing its best to make sure that every patient is treated in the same way.
Of course, many patients will stay anxious whatever you say to them. Anxiety is largely resistant to treatment with logic, reason, and compassion. It is the price our profession pays for labeling patients as High Risk and putting them in the psychologically vulnerable position of having to confront their mortality and their darkest fears about themselves or their children. But they would be even more upset if they were told that their results are taking longer because the lab decided to analyze some other patients ahead of them. Fairness, honesty, and equity must be our guides.