The test is not the goal

“If it is not broke, don’t fix it.” My mom, at least 1000 times.

 

Doctors have several bad habits. They order piles of tests just to get a vague, unfocused view of a patient’s health. They order expensive and invasive tests to rule out the unlikely or extraordinarily rare. The worse “bad test habit” is when doctors order a test, which, no matter what the result, will not change what they are planning to do.

Why do doctors over order? These same people thought a 96% on the high school chemistry exam was a life-ending disaster. They believed that those 4 percentage points would be the difference between doctor and dogcatcher (no insult intended to my canine-trapping friends, just a comment on over-qualification).   Physicians are prone to a standard of exactitude, which is not always reasonable, practical or merciful. They stay awake nights because of the minute possibility that there is a tiny chance of a small probability that an obscure diagnosis might be missed, because blood was not drawn, an x-ray not taken or an orifice not invaded.

There is not a lot of balance on the other side of the bed rails. Patients and caring family, especially in the invasive Internet era, are adept at expanding the differential diagnosis to maladies whose likelihood is remote. There is great deal of pressure on doctors not only too overturn every stone, but to dig five feet into the earth, no matter how unlikely a revelation or how probable a complicating scar.

Nonetheless, most is the test that will not change care. Frequently patients and docs fail to ask the question, before they stick in the needle or press the button, “What am I going to do with the answer?”

I saw a consult with sudden kidney failure. The patient’s kidneys stopped working after a cardiac catheterization…the intravenous dye was too much for his system. The cath was done because he was short-of-breath. This was more likely because his left lung was being destroyed by cancer. That he could not breath because he had a chest full of malignancy was ignored, in favor of an improbable diagnosis, unstable heart disease. More important, no one had asked, before they invaded his heart and wiped out his kidneys, “are we going to fix the coronary arteries of a patient with advanced lung cancer?”

The family and primary doc of a patient of mine canceled hospice, even though the patient’s brain was massively invaded by a horrible and aggressive tumor. She was taken off hospice so that an MRI of the brain could be performed and a laundry list of blood tests performed. The tests were done, to the discomfort of this frail patient, so that they could “better understand what was happening.” What was happening? She was dying, all be it slowly, from brain cancer. The patient went back on hospice.

I often see patients with advanced disease who are continuing to get x-rays and labs, even though their medical condition is beyond remediation. Instead of focusing on comfort at this moment right now, intrusive testing is the theme. Families, patients, get distracted from pain control and simple encouragement, while they run along with a medical team which is trying to treat by test, instead of achieving comfort as the primary goal. This viscous cycle of testing distracts from humane goals and can bring real harm.

I saw a 91-year-old woman in the office last Friday, who first came to see me in the spring of 2014. She has advanced cancer, of some sort, which has spread to her lungs. When she first saw me, two years ago, I said, “you have seven nodules in your lungs, and you need a biopsy.” She said, “But, I am 89-years-old, what are you going to do about it anyway?’ I had no good answer, so we agreed to watch and wait. Two years later, she feels fine. We have not repeated the CT scan, so I do not know if the nodules have gotten larger. Had we proven cancer, I would probably be patting myself on the back about how well chemotherapy was working, and she would have been suffering the side effects of my hubristic success.

It boils down to this. Have a clear understanding about how a particular test is going to change the plan. Do not go hunting in the dark and do not be fooled that unnecessary tests bring reassurance. They bring confusion. A test only has value if it improves life. Occasionally we need to remind ourselves that is the purpose of the practice of medicine, anyway.

 

 

 

10 Comments

  • john farese
    A wise MD
  • jdc
    Weighing pro and con, seeing what is more imperative, an intelligent and wise doctor knows to use philosophy in medicine. We are lucky to have such a doctor.
  • Cheryl
    Yea, your back. Very well said. This is why I trust you. Great to see you on my trip back to NJ.
  • Penny Egan
    Thank you once again! You are so right! I was missing your postings! XO
  • meyati
    Glad to have you back. This is so positive and graceful. It made my day, in a good way.
  • Carolyn Esposito
    So glad I can read your posts again...thank you for your insight.
  • D Someya Reed
    Very good, very true and very honest post. This should be a wake up call to both doctors and their patients. It's not difficult for a doctor to tell a patient WHY he is ordering a test and WHAT he expects to learn from or do with the results. Just as, equally, it's not difficult for a patient to ask her doctor the exact same WHY and WHAT questions if not told the answers voluntarily. Doctors not doing this as a matter of routine need to ask themselves "Why not?" You know if they were the patient, they'd certainly want to know themselves. Patients who encounter any doctor who refuses to fully answer such a simple and direct question (posed by either patient or patient's advocate) SHOULD NOT BE YOUR DOCTOR! I am, though, concerned with the story of your patient and the aggressive brain tumor. You stated: "The family and primary doc of a patient of mine canceled hospice..." I feel that this could be misleading to anyone reading this who is considering hospice either now or in the future. Unless the patient was completely incapable of making her own decisions, NO ONE can cancel the hospice selection of another person. Only the patient, unless deemed incompetent, can willingly rescind hospice. There can be no coercion of any kind from any party. However, If hospice hadn't yet started and no contract papers had been signed, the family and doctor could have decided not to instigate the transition to hospice. But, if either family or doctor (or both) did cancel that transition without consulting the (cognizant) patient, well, suffice it to say that my personal opinions of them and their actions would be inappropriate to be printed here. Hospice is ALWAYS for the patient, first and foremost, as the PRIMARY focus of care. Much lip service is given to the holistic and extended unit(s) of care aspects of hospice (aka, patient & family); but, without the patient there would be no hospice! If you or a loved one are under the care of a hospice that is not addressing the needs of the patient, first and foremost... If you or a loved one are under the care of a hospice that is using sedation in place of care without a reasonable, rational explanation... If you or a loved one are under the care of a hospice whose staff and/or management is telling you that they make any or all decisions (and not you)... then you DO NOT have hospice care as it was intended to be delivered by either those who founded it or our government that subsidizes it. If such is the case, you need to immediately report that hospice to your state licensing/regulatory agency AND your regional office of CMS (Medicare). Generally, hospice patients do not have the time to waste "going up the ladder" of responsibility within the hospice organization until someone is found who MAY do something about their care issues or to even contact an applicable outside "hospice paid" certification service even though they want you to tell them your issues first before reporting them to the authorities. Hospice membership associations are another waste of time as they are formed for the benefit of their hospice membership, first and foremost, not for the benefit of the public as patients. As always, if you feel there is immediate danger call 911 and follow that with a call to either Adult Protective Services (APS) or Child Protective Services (CPS) as appropriate. They must, by law, respond much faster than governmental agencies (usually 24-48 hours) and as "mandated reporters" must immediately report to the authorities what they have seen or even suspect. If I have any regrets from my own experience, it is that I did not think of APS until it was too late. If another hospice service is available in your area, you have the right to move your care to that other hospice and be provided all necessary care during the transition between the two. Expect and accept nothing less. Bad things happen in hospitals, nursing homes, skilled nursing facilities, etc. and hospice is no exception. We all need to protect ourselves and our loved ones from anyone who would do them harm. Hospice is the patient's choice, not the family's, not the doctor's, not the government's and certainly not the hospice's. Our lives are the only thing we have in this world that are truly ours. If the hospice mantra of being "about life" is true then no legitimate hospice would do anything to persuade us from taking any actions we deem appropriate (or feel comforted by) to protect ourselves or those we love . No one should (or is legally allowed to) cancel hospice services for another person without that person's informed consent (and absent coercion of any kind) especially in order to put them through needless, unnecessary suffering!
  • jill mckenzie
    I wish someone had ordered the right test 20 years ago. I also wish that I was given accurate and non conflicting diagnostic info. After my initial diagnosis for breast cancer..1991. I am stage 4 now. I have been handling chronic head and neck pain, equilibrium issues, neurological issues for 25 years. Once it gets to the point when it is really severe..oh then they order the tests.
  • Patients can be enrolled in a hospice care that is Medicare certified AND non profit, mission driven - and have patients who choose to revoke an active enrollment in hospice care in order to have a specific treatment or diagnostic tests. Might be a sx or problem that is unrelated to terminal dx, might be a decision by patient/family to want to know more about a new sx before choosing to 'not aggressively treat' it, or other reasons. A good hospice only lays out choices and supports patients in whatever decision is made by patient and family after consultation with both hospice team AND non hospice providers. Like any other process, abuses are possible, confusion and muddled communications are frequent, nothing human is perfect. But don't assume coercion is the only cause of revocation of hospice benefit after hospice care is established.

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