Letters from the Front Lines

I want to share with you a success story that has played out over the last three months.

I have been working with a woman in her mid-fifties who is wheelchair bound due to crippling arthritis and obesity.  She is about one-hundred and fifty pounds overweight and suffers from all the accompanying serious medical problems, including diabetes, high cholesterol, high blood pressure and heart disease.  Less than a year ago, she survived a heart attack and had a coronary stent placed.  She is a simple and sweet woman, grateful to be alive, gentle towards her husband, and she trusts completely her doctors’ advice.

She and her husband are in a tragic and all-too-common situation.  He makes too much to qualify for Medicaid, and yet they can’t afford insurance.  She has been prescribed seven medications by her specialists and me, some of which are essential for her, like diabetes and heart medicines.  However, she doesn’t take them regularly because she can’t afford them.  The total monthly bill for her pills would be over $400, which is impossible for her.  I have been able to help keep her afloat with samples and generics, but there is one medicine that she has been unwilling to go without:  Effexor XR, at a cost of $150 a month.  She has continued to take this preferentially over everything else.

I raised this concern several months ago and suggested we switch Effexor XR to something generic, or stop it altogether.  This worried her, because she had been on it for twelve years, and the one time she had tried to come off of it, she had a horrible withdrawal reaction.  Eventually, I helped her understand that due to cost, side effects, and inefficacy, it didn’t make sense to continue Effexor XR at the expense of her worsening diabetes or heart disease, which if not controlled could lead to her death.  She chose to try to wean off of Effexor XR over a four-to-six week time period, a plan supported by her husband.

We decreased her dose in increments week by week, and she handled these adjustments fairly well.  But when the time came to stop completely, she began to have difficulty.  At first, her complaints were physical:  nausea, dizziness, blurry vision, headaches.  These symptoms were expected, and we treated them with temporary pain, nausea, and anxiety medicines.  I offered her the chance to resume the medicine at the lowest dose and slow down the withdrawal, but she declined.  By this time, she was committed to weathering the storm and getting through it sooner rather than later.

Then things got worse.  About a week after stopping, her emotional state dramatically declined.  At a follow up visit, I walked into the room and was startled by her appearance, disheveled and scowling.  She snapped at her husband, who had a frightened look on his face, like he didn’t recognize this person anymore.  She began sobbing within seconds of my greeting.  She expressed anger, despair, wanted to vaguely “run away” and get divorced, and said passively that she wished she could die.

This was very concerning to me.  Part of me felt like we were at the peak of the withdrawal, and if we could just hold on, things would get better soon.  But another part of me thought that we had gone too far, too fast, and that without tying her into additional resources, I had set her up for failure.  She couldn’t afford counseling or inpatient care, and basically, she had only her husband and me to rely on for support.  I feared that she was a person who had been on meds too long, who had too many strikes against her and would never successfully wean off.  After careful discussion with her and her husband and determining that she was not at risk for suicide, I advised her that I thought we should resume a generic SSRI, take some benzos for anxiety and sleep, and then reassess the situation in a few days from a more stable vantage point.

Then an interesting thing happened.  Slouching in her wheelchair, she looked at me through bleary eyes, peering from a depth of soul through the fog of despair, searching for any glimmer of sunlight.  She said she didn’t want to give up yet.  She hated that a medicine could have this kind of control over her.  She asked desperately, “You said this part would only last a few weeks.  Do you think I’ll ever be well again?”

I considered how to respond, knowing that she would cling to whatever I said, wanting to help her both now and in the long-run, wary of being wrong or overly-optimistic, equally wary of being pessimistic and giving up too soon, right before the moment of victory. There was no guidebook for this moment, no protocol for this decision.  I was taking a step into the dark, and I knew that she would be following my lead.  That was a lot of responsibility, and a pivotal moment in her life, so I had better be right.  I thought of what I knew of her from all of our previous interactions, what she would have wanted me to say in this very moment if she could have foreseen it, and I decided to reach for hope, for her and for myself.

“Yes,” I said carefully, “this part will be over soon, maybe tomorrow, maybe next week.  But yes, you will feel well again.  If you promise me you will be safe, then I want you to go home, take this valium, and sleep.  See me back in three days.  If you are still willing to fight through this, then I will fight with you.  I think you are very brave.  Your brain is resetting after years on this chemical, and you will get better.  There are brighter days ahead, I promise you.”

She nodded through tears and said, “Okay, Doctor.  I trust you, I trust you.”  Her husband agreed to this plan, and we established some emergency protocols.  They made a follow-up appointment, and he wheeled her out of the clinic.

That was two Mondays ago.  I am happy to report that when I saw her back the following Thursday, she looked like a brand new woman.  She was smiling.  She felt physically well and emotionally stable.  She had hope in her eyes and voice.  Her husband looked relieved.  He had watched over her while she slept for most of a day, and when she awoke he said it was as though the fog had lifted.  Now, she was herself again.

I was relieved, too.  I am going to continue to follow up with her weekly for the foreseeable future.  With the money she is saving, I hope to have her visit with a counselor at least a few times.  We are working to get her other health problems under control.  We will surely face more obstacles going forward.  But that is life, is it not?  Obstacles, challenges, failures, triumphs.

It seems to me that she is a person who was originally medicated because it was assumed by well-meaning medical professionals that she lacked the aptitude or desire to cope with life on her own terms.  I wasn’t involved in that decision, so I don’t want to judge, and maybe their approach served a purpose in its time.  But I think they underestimated her.  I almost did, too.  She is resilient, and has a glowing fire of resolve and toughness within her that is now shining through.  She has just completed a very difficult thing, this Effexor withdrawal, and I believe her victory will bolster her self-concept and sense of inner strength.  That bodes well for her future mental and emotional wellness, no medicines required.

Mark

Bob–

I’m going to share with you a case from today that did not involve psychotropics, but I think it illustrates an important point about the opportunity cost of reflexive prescribing.

I saw a new patient today, a distinguished fifty-two year-old gentleman who is the CEO of a local engineering firm.  He was looking for a new doctor because he was dissatisfied with some communications from his previous doctor’s office.  He’d had some blood work done, and a week later had gotten a call from a nurse, who told him that his bad cholesterol was high, and he needed to start a medication.  This was the first time in his life his cholesterol had been high, so he asked how high.  She answered that she didn’t really know, but she read him a number and told him that the doctor wanted him to start the medication and come back in three months for a recheck.  No other recommendations were made.  He said okay, and the prescription was phoned in.  When he picked up the medicine, he was told this was brand new, and so with his co-pay, it would be $40 a month, and without insurance, it would be $230 a month.  He paid for it, but hadn’t started taking it.  Something just didn’t feel right.  He was frightened to hear he needed medicine, but frustrated with the expense and the lack of explanation, so he came to see me for a second opinion.

I reviewed his labs, and it turns out that his bad cholesterol was borderline high at worst, and that the rest of his parameters were excellent, including a phenomenal good cholesterol.  The blood tests had been done the week between Christmas and New Years, and he admitted that he had not been eating well during that time.  Also, he had stopped exercising over the winter because of weather and because work was so busy.  He wanted desperately to avoid medication, and he asked me what else he could do to get his cholesterol down.

This was a great opportunity.  We had a productive conversation about dietary changes, weight loss, exercise, fish oil supplements, etc.  He was soaking up all of this information, taking notes, asking questions.  Being highly motivated, there is no doubt that he will succeed in getting his cholesterol under control soon without meds.  But here’s the kicker:  because all of these lifestyle changes have positive effects far beyond the narrow parameters of cholesterol, I think there is an excellent chance that he will be able to get off of his blood pressure medicine, that he will start sleeping better, that he will feel healthier, both physically and mentally, and that if these habits are sustained, that he he will live a longer and more fulfilling life.

There are a lot of disturbing things in this story, but here’s the point I’m trying to make:  reflexive prescribing without offering alternatives is almost always bad for the patient.  His previous doctor was following a strict parameter, so reflexive that he didn’t even communicate with the patient, but had a sort of perfunctory protocol to just phone in from a nurse.  In this doctor’s world-view, I’m certain that he was acting in good faith, doing what he thought was in the patient’s best interest.  After all, medical literature and guidelines are very clear:  patients who exceed certain cholesterol parameters must be on medication.  To do less is not considered standard of care.  He has heard this message repeated in seminar after seminar, sees full color ads popping out from every medical journal, has attractive pharmaceutical reps courting him with lunch every week.  This is the world in which he lives, and in this world, the cure for high cholesterol is pills.

How harmful this world-view is.  While I believe there is a role for cholesterol lowering meds, it wasn’t appropriate for this man at this time.  Imagine the cost, the side effects (cholesterol-lowering medications have frequent side effects and require frequent laboratory monitoring).  And now imagine the opportunity cost.  This highly intelligent man starts taking the pills, thinking he is doing the best thing for his health because that’s what the authority figure in the white coat recommended and what the ads on TV suggest, and he neglects to begin eating healthy, to exercise regularly, to lose weight.  His blood pressure stays high, his insomnia worsens, now he is getting muscle aches from the medicines so he starts exercising even less, and above all, he has now constructed a new self-image.  He has a disease that is beyond his control, and the cure must come not from within, but from outside, in the form of a pill.

The parallels to reflexive psychotropic prescribing are clear.  Patients present with symptoms that seem to fit some authoritative criteria, doctor feel pressure to adhere to guidelines and render therapeutic recommendations, and patients are uncertain and frightened and trusting.  Medications are begun, and once that threshold is crossed, their necessity is rarely questioned again.

In the world of mental health, this leads to a dreadful situation that I encountered two months ago:  a six year-old girl started on Risperdal by her psychiatrist at age four for the dire symptom of temper tantrums, and then started on Adderall the next year when she couldn’t focus in kindergarten, and now coming to my office for a well-child check looking like a zombie, with the poor mother frightened because her daughter’s behavior seemed to be worsening, and wondering if they needed higher doses of the medicines.  And here is what I think should be a crime:  the psychiatrist never informed the mother about any potential side effects of Risperdal.  Never.  In fact, she essentially bullied this mom into starting this powerful brain-altering antipsychotic two years ago, telling her, “If you don’t start this medicine, your daughter’s behavior will only worsen and she will likely end up in jail some day.”  As mom told me two months ago, “I was so scared by what she said that I didn’t think I had any choice but to start the medicine.”

I’m happy to report that this young girl is now off of Risperdal, on half her dose of Adderall, and planning to get off everything once school is out this summer.  She has a twinkle in her eye and she is doing great in school, though she had to visit with the principal last week when she got in trouble for passing notes in class.  But mother’s okay with that.  She told me this week, “I feel like I have my daughter back.”

I had a mentor share a quote with me once:  “The end result of the movement towards evidence-based medicine will be that hardly anybody takes any medicine.”  That may be a little extreme, but wouldn’t that be nice, to use medicines as the very last resort, instead of the first one?

Mark