Who takes over when you get a mentally ill family member to the ER? Nobody.
Lately I’ve been trying to get help for a relative who is mentally ill. What passes for a “mental health care system” in the United States is a joke. There is no system. There is a patchwork of uncoordinated crap.
I try to be positive and constructive on this blog, and to offer something of value to my readers. This post will be no exception, but I need to get a short rant out of the way first.
Some observations …
- HMOs tend to farm out mental health services to independent clinics, and then refuse to coordinate with those clinics (like transferring medical records to the psychiatrist). This means the person with mental illness needs to deal with such logistics (which means a family member or caregiver needs to do it — if they have access and permission).
- There is an incredibly low bar for “well” or “ok” among most psychiatrists. If you are not currently committed for violent or suicidal behavior, you are doing “well” or “fine.” Even if the patient is delusional and suffering from severe memory issues, they are deemed “ok” if they are not hospitalized.
- All psychiatric drugs are prescribed on pretty much a crapshoot “let’s see if this works” basis.
- It is extremely rare for a patient with mental illness to be able to work with a single qualified psychiatrist, or even a single team. The patient is much more likely to see a psychiatrist who is new to their case, ignorant of their history, and under too much time pressure to carefully consider the needs of the patient.
- Getting committed to psychiatric lockup is horrible for the patient, even if the facility is run well. Everyone is aware of losing their freedom when they lose it. But often it’s the only way for a patient to get care. Usually the care is sub-par, and consists of sedation, cursory evaluation, and rapid discharge.
- The “residential treatment” options I have seen are really dismal. Ratty houses, cramped quarters, no psychiatrist (or therapist) on staff, lots of TV watching, lots of sitting around. Not a healing environment.
I could go on and on, but my point is simply that there is massive room for improvement. The Mental Health Parity Act (2013 technical amendment) is a start. But what would real improvement look like? What’s the best case scenario?
I’ll put forth my own pipe dream. Here’s what I would want the experience of trying to provide help for a mentally ill family member/loved one to look like:
1. Let’s assume the patient has HMO coverage with Kaiser Permanente, either through employment (unlikely if they are chronically disabled), through Medicare, or independently purchased. (Already we’re in pipe dream land, right? Many people with mental illness don’t have *any* medical insurance).
2. I notice my family member or friend is having severe psychiatric problems (serious depression, mania, psychosis, delusions, hallucinations, confusion, memory loss, etc.). Let’s assume I manage to notice these symptoms before they reach a point of “decompensation” (med speak for losing your shit entirely — especially with schizophrenia).
3. I convince the friend or family member that it’s time to seek help, and (depending on the seriousness of the symptoms) we go to the ER or make a regular doctor’s appointment. Those who have been in the situation know what a Herculean feat of patience, persuasion, and persistence this single step entails.
4. Medical tests (blood work, blood pressure, exam, interview) are run to rule out stroke, side effects of new meds, etc. These tests are either run in the same intake location (ER or doctor’s office) or a medical escort is offered to help the patient and caregiver navigate the system (pipe dream — I know!). If it’s clear the problem is psychiatric in nature, the patient is referred (immediately) to a psychiatrist on call.
5. The on-call psychiatrist begins the diagnostic process, considering recent events in the patient’s life, meds history, family history, nutrition, sleep, past episodes of mental illness, etc. At this point the on-call psychiatrist refers the patient to a permanent psychiatrist (the patient would have the option to change doctors later if desired), and provides the option of a short-term residential voluntary stay in an HMO-managed facility.
6. The permanent/longer-term psychiatrist meets with the patient and caregiver(s) in the context of the short-term residential program or regular appointment. The in-depth diagnostic process begins, and includes the following tests and considerations:
- detailed patient history (previous episodes, past and current medications, life circumstances)
- genetic (family history and complete DNA sequencing)
- nutritional (eating habits, allergen testing, gluten sensitivity, tests for vitamin and mineral deficiencies)
- infectious disease, as related to psychiatric conditions (neurosyphilis, toxoplasmosis, etc.)
- recent traumatic events (death in the family, divorce/breakup, loss of a job, etc.)
- sleep patterns, sleep deprivation
- changes in medications, side effects of medications
- recent chemical exposure/toxicity
- drug/alcohol abuse
- meditation (not kidding here — I know of two cases of meditation-induced psychosis)
- recent head injury or concussion
- brain scan/other neurological tests (looking at both activity and organic structure/pathology including injury or tumor)
7. The patient, psychiatrist, and (if invited) caregiver(s) come up with a treatment plan, and treatment goals. The treatment plan would contain the following elements:
- conservative medication (conservative both in dosage, and in the number of concurrent medications, and in the duration of the prescription — not every psychiatric patient needs to be on meds for the rest of their lives)
- medication tapering (if the side effects are suspected as being part of the problem, powerful psychiatric medications may need to be tapered off slowly, over a number of weeks or even months)
- nutrition (high nutrient/low junk diet, with food restrictions if tests indicate such restrictions might be helpful, correcting any nutrient deficiencies)
- exercise
- social (time with family and friends)
- therapeutic (group, music, talk, addiction, whatever is appropriate for the patient)
- treating any infectious diseases or other treatable organic causes discovered during the diagnostic process
Not all of these elements would be required for every patient … it might be more effective to devise a simpler treatment plan with fewer elements. But they should all be considered by the psychiatrist.
8. The patient should have the option to stay in a voluntary residential program (HMO-managed, covered by insurance), under psychiatric observation, for as long as they need. In cases where powerful medications are being added, tapered off, or modified, months of observation and supervised meds might be required.
9. Follow-up. The patient should be able to meet with the same long-term psychiatrist for years, as needed.
Those who have had experience dealing with the mental health “system” in the United States know how far we are from anything remotely resembling the scenario described above.
But it’s not impossible.
A few years ago I had a hernia repaired, through Kaiser. The entire process was incredibly streamlined and well-managed. Every step of the process was well-organized. The level of care was excellent. Even with insurance, I paid a lot out-of-pocket, but it didn’t bankrupt me.
So large HMOs can provide excellent care. But most of the time, people with mental illness fall through the cracks. They are treated like 2nd-class citizens. They are blamed (or partially blamed) for their own condition. Their treatment is outsourced to poorly funded, haphazardly run clinics. Caregivers must navigate a Byzantine maze of services. The left hand doesn’t talk to the right hand. The ball is constantly dropped. Nobody is willing to take responsibility for the patient’s medical care. Doctors say “it’s a psychiatric problem,” as if the brain were not an organ of the human body.
Psychiatric care should be medical care. One system, accountable and responsible for the wellness of the patient. Just like any other disease!
Psychiatric care is incredibly complicated (and expensive). The patient isn’t thinking clearly, and won’t necessarily comply with recommendations. So HMOs like to avoid the sticky wicket, and outsource the care. But they shouldn’t be allowed to. They should step up and deal with these patients like they do with every other kind of patient. That’s why the Mental Health Parity Act and continued improvements to psychiatric healthcare are important.