An Imaginary Conversation
If insurance companies treated customers with cancer the same way they treat customers with a mental illness, it would sounds like this:
Insurance Agent: Green Cross Super Insurance Agency, Melinda speaking. May I help you?
Caregiver to a Cancer Patient: Good morning. My husband has non-Hodgkin’s Lymphoma and the hospital informed me that he would be discharged today.
Agent: It appears your husband was admitted to the hospital 36 hours ago, is that correct?
Agent: According to our records, his doctors believe he is much improved so we can no longer authorize in-patient care in a hospital setting.
Caregiver: Um, he’s over six feet tall and weighs 135 lbs. and his face is paralyzed. Not to mention that he needs a blood transfusion later today and probably another one tomorrow.
Agent: Those can all be handled on an outpatient basis, Mrs. Ojeda, there’s no need for him to continue at a hospital past the point where his doctors indicate that his situation has improved.
Caregiver: Do you have any suggestions for where he will receive this outpatient treatment? We live in a small town. The closest hospital with an oncologist is 200 miles away.
Agent: I’m sure that your local primary care physician will be able to handle those concerns.
Caregiver: We live in a SMALL town, Melinda. We don’t have a primary care physician that holds office hours on a regular basis.
Agent: I’m sure your husband will be just fine. Seriously, Mrs. Ojeda, I don’t understand your objection to having him discharged.
Caregiver: He doesn’t have any white blood cells, for one thing. What if he gets sick?
Agent: Well, of course if he gets sick you’d want to take him to the doctor’s office, wouldn’t you?
Caregiver: Two hundred miles away?
Agent: Of course not! The local doctor’s office.
Caregiver: He might be dead before I could get an appointment.
Agent: I’m sure you’re exaggerating, Mrs. Ojeda. Thousands of patients have been discharged from the hospital following the exact same protocols and there’s nothing to indicate that your husband would get worse after his doctor has clearly stated that he is doing better!
Caregiver: You don’t understand. I know my husband. I’ve been in the hospital with him and I know how easily his situation can go from ‘doing better’ to ‘life-threatening.’ You’re suggesting that I take him home today, and if he survives the car trip, that I care for him at home—you know, I’m not a medical professional, I’m a teacher for goodness sake! And—
Agent: —And once he’s safe and cozy at home, I’m sure he’ll continue to get better! (Melinda chirps.)
Caregiver: No. Once he gets home and gets a cold, he could die before I transport him back to the hospital. Why can’t he just stay in the hospital and continue to get better?
Agent: I’m sure it’s not as serious as that, Mrs. Ojeda. We know that recovering from cancer takes time, so our underwriters have come up with a formula that will work just fine in your situation. It looks like his next chemotherapy treatment is scheduled and preauthorized for a month from now—that’s standard procedure—
Caregiver:—YOU don’t understand! He doesn’t have ‘standard cancer’! He has a rare form of non-Hodgkin’s Lymphoma that has metastasized to his spinal fluids. Why can’t he stay in the hospital? Or better yet, why can’t he be admitted to a treatment center that specializes in treating someone with his exact form of cancer?
Agent: According to our protocols, there is no indication that such a drastic step is necessary. Of course, you can always send him to the hospital of your choice, you know.
Caregiver: And insurance will help cover it?
Agent: Oh, no, we only cover standard procedures at in-network facilities. Those treatment centers don’t have the same regulations as real hospitals. Why, I’ve heard they are nothing more than glorified resorts!
Caregiver: His doctor did tell us that a treatment center would provide the best outcome for someone with my husband’s diagnosis.
Agent: Doctors. Don’t you hate how they think they know everything?! If you want to go that route, you’ll have to pay for it yourselves. This is an insurance company and we don’t authorize more treatment than is necessary according to our charts and regulations, nor do we pay for high-priced resorts for people who don’t want to go to work.
Caregiver: Wouldn’t it be less expensive to allow my husband to go to a treatment center where they address his disease holistically? It seems as if it would cost the insurance company less and produce less paperwork if there were just one admission and one treatment plan.
Agent: As I said before, there is no clinical proof that a treatment center would work any better than our partial hospitalization program, so we only authorize what we know has worked in the past.
Caregiver: There’s nothing I can do? No one I could write a letter to and explain about the treatment center? Could I even appeal the decision to have him released today? (Said through a torrent of tears).
Agent: Well, you could always TRY writing a letter and it’s POSSIBLE that they would authorize one more day of treatment. But the company has never paid a penny for one of those fancy treatment centers. No proof that they work, remember?
Caregiver: Thank you for your time.
The Difference in Care
Remember, this scenario is purely fictional. My experience as a caregiver and advocate for my husband during his catastrophic case of cancer was generally positive and I will be forever grateful that we had good insurance that authorized every life-saving measure the doctors ordered (I know not everyone has had the same experience—even for cancer cases).
But if one were to replace the word ‘cancer’ in the conversation with ‘depression’ or ‘eating disorder’—that’s a different story. Whilst acting as a caregiver and advocate to an adolescent who struggled with an eating disorder, suicidal ideation and severe depression, I discovered the disparity between how insurance companies treat the two illnesses.
If a person is suicidal at the moment, they will be admitted to a hospital for observation. But if they’re killing themselves through binge eating or anorexia, they have to reduce themselves to a skeleton or cause bodily harm through overeating in order to receive hospitalization benefits—and the benefits only last for a short amount of time (until the patient appears to be making progress).
Once the patient reaches the criteria for ‘making progress’, the patient is discharged and expected to find local, weekly help through a counselor. Which is fine if one lives in a large metropolitan area with plenty of choices.
What if Local Help isn’t Available?
We live in a very small town in a state with a very small selection of insurance-approved facilities—and none of them would authorize full hospitalization unless the patient expressed suicidal ideation (a fancy word that means someone has thought about killing oneself and has considered different scenarios). But once a patient feels slightly better and the crisis has passed, the insurance company sends them back home to receive help once a week or twice a month.
As parents we did everything in our power to find the best place for our daughter (within our means). This included having her live with relatives 600 miles away so that she would be able to drive herself four hours each day (two hours each way) to a six-hour a day partial hospitalization program that insurance DID cover. She lasted a week and then called home and told us she’d been thinking about going for a walk at night and stepping in front of a car.
We drove to Phoenix that night and I caught a flight to go and bring her home. At least at home she would be where we could watch her twenty-four hours a day (that’s not a burden we wanted to place on relatives).
Health Insurance Doesn’t Want to Pay for Continuity of Care for Mental Illness
Without continuity of care (she received care in four different states, and two different countries from five different psychiatrists and five different counselors over a period of two years as she tried to ‘do life’ whilst struggling) two things happened. Neither one of which would have happened if she had been diagnosed with a well-understood condition such as cancer.
First of all, she didn’t find relief for what ailed her. Anyone who has searched for a cause to a physical ailment for more than one doctor’s visit knows how frustrating and debilitating this can be.
Second, she was not properly diagnosed for two long years and she’ll be living with the consequences of that missed diagnosis for the rest of her life (but that’s another story, and not mine to tell).
I can’t help but wonder how much agony could have been avoided if she had been allowed to enter a treatment center where trained professionals look at the problem from a holistic point of view that looked at the complete picture of what had been happening.
I can’t help but question the logic of an insurance program that will fork out $27,000 for a partial-hospitalization program for ONE WEEK but refuse pay $45,000 for a full treatment program that lasts for TWELVE WEEKS.
I’m not that great at math, but even I can see how ludicrous this is. I do understand that not all treatment centers are created equal and that there is no regulation standard or certification process for the many centers that have sprung up in the last twenty years.
I discovered that insurance companies ‘trust’ programs operated by a hospital, and will authorize benefits—but the patient has to be suicidal or almost dead before they can be admitted on a full-time basis. Tragically, they often only receive comprehensive care until the doctors ‘see improvement.’ If one happens to live a long ways from a hospital, well, they get to see a counselor once a week.
From a financial point of view, treating a patient holistically and intensively for three months (and including the family members in the treatment plan as the professionals see fit) would cost less in the long run. Sarah’s multiple admissions to crisis centers, partial-hospitalization programs and individual counseling sessions stretched out over two years—not to mention the emotional toll extracted from the patient and family members during this process.
As brave people with mental health issues stand up this month to speak out about their stories and their experiences, I ask you to listen. If you would have asked me two years ago what I knew about mental health, I would have known very little.
Chemotherapy or radiation don’t provide a cure for mental illness. It’s a lifelong sentence that requires all of us to learn what we can in order to help those who suffer. If we all ask questions and question authority, maybe we can change the way insurance companies pay out benefits for those with mental illnesses.