I’m a father struggling to keep my adult son alive in Louisiana’s broken mental health care system. He’s been hospitalized 38 times in 7 years. AMA

What's is your plan for your son when you die?

I'm in the process of writing a will with a Special Needs Trust that I hope will leave a legacy that will help Kevin's younger brother to care for him. Michael, my youngest, is working on his Ph.D. at UCLA in his field of neuroscience/psychology and we've had that talk.

Thank you for your time. Can I ask you a question that might come off as a bit cold?

Sure.

Guess it's two questions. First, if he's an adult and doesn't want to live anymore with his awful condition what gives you the right to keep him from ending his life? Second, how will your other son feel when you are gone and he is taking care of your older son and he kills himself? Is that fair to him to have to shoulder that guilt? I have friends and family with mental and physical disabilities and these questions weigh on me.

Questions well asked. First, you have to decide what system you want. Do you want a system that intervenes in suicide and values life? I do. I believe we have to get our loved ones help when it can actually lead to better lives and the suicide threat is temporary.

I don't know how anyone will feel when I'm gone, but, my youngest son and I have talked and I'm not asking him to do anything he can't handle within his capabilities. All families that deal with suicide ask themselves, Did I do enough? Too much? It is an age-old question. We can only hope that in future years some of these burdens can be relieved in an effective health care system.

Where is Kevin right now? Is he feeling alright?

He lives with me and is pretty much at his baseline. His psychosis is controlled for the most part but he does have outbursts and does hear voices sometimes. Last night, after a good weekend, he was having a hard time. He has self-awareness about his disease and gets angry about it. He also suffers from social anxiety and isolation.

Well, at least he's with you. It's nice to see a parent who cares so much about his son. I'm sorry you have to put up with so much bullshit.

Thank you and I'm doing my part to move the needle for reform. This is an issue that affects all of us. Whether it is a family member, co-worker or an ill person that is homeless or threatens violence, this is a major public health issue.

An effort in which I'm involved is a local AOT (Assisted Outpatient Treatment) undertaking which will ramp up next month. In Louisiana it is based on state statutes called "Nicola's Law" and was based on New York's "Kendra's Law". This is important stuff, that is basically outpatient commitment. See, http://www.treatmentadvocacycenter.org/fixing-the-system/promoting-assisted-outpatient-treatment.

Katherine here -- if you want learn more about what's happening on AOT in New Orleans, I explored the local movement here: https://www.nola.com/health/index.ssf/2018/10/a_fragile_state_could_a_judges.html

AOT law has been on the books in Louisiana for a decade with little use of the law, until now. Advocates seem to be making progress on getting AOT courts started.

Katherine here -- I think that's another common theme among caregivers -- they see their loved ones with severe mental illness searching for purpose in life despite having a disability.

Would a different state have better services for someone in your situation?

Absolutely. Even other countries. There is a great model for community treatment in Trieste. Of course, the states with better funding have higher taxes.

Good evening from the UK. The mental health system here is failing, too. People keep throwing around words like "money" and "funding" but from my experience (my partner has had and still has mental health issues) throwing money at the system isn't going to work unless an enormous overhaul is undertaken first.

All that to one side what specifically do you feel are some of the biggest failings in mental health care system at the moment?

Here we are having a policy debate about allocation of resources between the conditions of depression and anxiety, on the one hand, and serious mental illness, like schizophrenia, on the other. SMI, when not properly medicated, can lead to violence, as we've seen too often. Some of the powers that be do not give enough attention to SMI.

Here are some links regarding public policy. https://mentalillnesspolicy.org/national-studies/need4treatmentstandardmap.html

https://store.samhsa.gov/product/Transforming-Mental-Health-Care-in-America/sma05-4060

https://store.samhsa.gov/product/Transforming-Mental-Health-Care-in-America/sma05-4060

https://www.fda.gov/regulatoryinformation/lawsenforcedbyfda/significantamendmentstothefdcact/21stcenturycuresact/default.htm

https://www.nami.org/Press-Media/Press-Releases/2018/NAMI-Celebrates-Mental-Health-Victories-in-Federal

https://www.nami.org/Press-Media/Press-Releases/2018/NAMI-Celebrates-Mental-Health-Victories-in-Federal

First, thank you for doing this AMA. I don't think progress in treatment or improving social perception of mental illness is possible without this kind of dialogue, but I can't imagine it's easy.

Questions:

1. What do you think the non-physician staff at hospitals can do to help improve the experience for you/family and improve outcomes for patients?
2. Are there any specific misguided policies/practices that have made your life or Kevin's treatment harder?

Staff can reach out to caregivers in a more constructive way. Sometimes they completely ignore caregivers and don't bother to get a recent history, recent meds, etc. They can also be more helpful in letting us know what our patients need. There are MANY policies that need review. HIPAA reform, IMD exclusion reform, Social Security disability changes, and more. Eliminating the disparity between normal illness and mental illness in policy and insurance coverage would be a major step forward.

Another huge issue is proper training for crisis line staff, police and EMS workers. I always fear, during a psychotic episode, that Kevin will have to deal with the wrong officer and wind up dead. There are entirely too many patients in prisons instead of hospitals, and the police do not want to deal with SMI episodes. Some communities are dispatching crisis staff with police, but there needs to be an entirely revamped system to deal with these patients.

Another issue is not being an active part of discharge. My son has been discharged many times without a review of meds, or follow-up, or side effects.

More emphasis on middle care is important. Kevin goes from lock down hospital psych ward to being at home in one day. There are no clubhouses or Fountain House resources were we are. He needs some transition from hospital to home and something to reestablish normal living skills as a daytime program.

Sometimes the psychiatrists are the biggest part of the problem. In Kevin's last hospitalization he did not receive anti-psychotic meds for over a week. I even brought his meds from home and gave them to the nurses.

Why are you struggling to keep him alive? Conditions in hospitals or mental health etc.?

Kevin has a history of suicide attempts, but, in addition, each episode of psychosis damages the brain. Yes, it is a struggle to get adequate and appropriate treatment with each hospitalization, as well as clinical treatment. The system, overall, is broken.

See, https://www.amazon.com/Insane-Consequences-Mental-Industry-Mentally/dp/1633882918/ref=sr_1_1?ie=UTF8&qid=1542128742&sr=8-1&keywords=dj+jaffe

For a good discussion of what family members deal with, see, https://www.amazon.com/Crazy-Fathers-Through-Americas-Madness/dp/0425213897/ref=sr_1_1?ie=UTF8&qid=1542128703&sr=8-1&keywords=pete+earley+crazy

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Katherine here -- I know Reggie will want to explain his experience. But I've talked to many families going through this cycle of repeated hospitalizations. Many people find that their loved ones are released after only three days or, because insurance refuses to continue covering a hospital stay and/or they've been medicated enough for a doctor to deem them stable enough for release. Families are finding long waiting lists to get into longer-term care hospitals. My colleague Rich Webster working on our Fragile State series recently crunched the numbers and found that in Louisiana, there is an average of five mental health beds in state hospitals per 100,000 people. To adequately treat those with serious mental health problems, there should be between 40 and 60 beds per 100,000, according to the Treatment Advocacy Center.

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My reply disappeared. My feedback is that you should not be afraid to speak up, because that is the only way the system changes. Also, the sooner patients get diagnose and help, the better the prognosis for recovery. Best of luck!

Each admission meets the general criteria of a danger to himself or others. He seriously decompensates into a different reality. He has been hospitalized 5 times this year so far. The hospital stabilizes him in a controlled setting, which I cannot provide. When the psychosis ends, he is released.

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Don't be afraid to speak up. The good news is that this can be a bipartisan issue. You can get local, state and federal officials to respond. And, if you don't speak up, nothing is likely to change for the better. The sooner you get your family member the help they need the better the prognosis.

Serious: what is it that you expect from the system? What does Kevin need that he’s not getting? Therapy? Meds? What’s the brightest picture you can paint for Kevin’s future given his disorder and the current system standards and how does that compare to your ideal out come for him? Thanks.

I expect a system that works as well for the mentally ill as other types of illness. We've lost over 100,000 beds nationwide in recent years. I expect a system that does not require me to lie or play games with crisis responders ("He threatened to kill me" when it's a situation of decompensation, but, you have to say the magic words). I expect "middle care" that is some daytime treatment or therapy that leads to a more independent life. I'm not going to live forever.

Time is generally on the side of the schizophrenic, if properly treated. I hope he can live independently, handle his own meds, reestablish social relationships, and have some normalcy.

Have you considered (as a last resort) the drastic measure of possibly moving to a state with a better healthcare system and the corresponding funding that goes with it?

Yes, I have. Funding and resources vary from state to state. I also have to consider affordability during retirement. It's disappointing that the spending per capita from state to state varies so greatly, and that treatment standards are so different.

I'm in Louisiana, and I've considered Florida, Georgia and Maryland. Each has pros and cons. Florida has some nice initiatives but real estate is pricey.

I spent time in psychiatric hospitals in both Louisiana and Florida and I can say undoubtedly that Florida is far, far, far superior.

What made them better?

There is a broad agreement that the health system in general, and the mental component in particular, is broken. Is there any light at the end of the tunnel?

There has been some progress in recent years. Today's announcement by Alex Azar was helpful. https://www.healthleadersmedia.com/strategy/new-medicaid-waivers-available-short-term-residential-mental-health-services

Republicans get it, but don't want to fully fund. Democrats will fund, but, not always in the right direction.

Grass roots initiatives are very important.

I've heard a lot from family members in the healthcare system that they just don't have enough "beds" for people at their hospitals that aren't critical. Do you find this to be an issue no matter where you go? Do you think this is a lack of doctors, knowledge, or money/physical space?

Katherine here -- I'll chime in on the issue of beds. In Louisiana, there are two state-run mental health hospitals left. One has 120 beds -- 60 for men and 60 for women -- that accepts people for long term care who've ended up there in crisis. Often they have been involuntarily committed through civil courts. Then, there is Eastern Louisiana Mental Health System, which used to have a mix of forensic patients -- patients sent there through the criminal justice system -- and civil patients. Now, due to demand, ELMHS with 600 beds or so is entirely forensic. The state does contrat with private hospital for a few other long-term beds. And Louisiana is by far not the only state where the forensic population is rising. People with serious mental illnesses aren't getting the treatment on the outside, before getting involved with the criminal justice system.

Very true. For a number of reasons, particularly the Federal response to the asylum problem in the 1950s, public policy was to close those institutions and move to a local community approach. Sadly, those beds were never replaced. Now, mental patients are in jails and prisons instead.

How about your wife? Or your son's mother? You haven't said anything about her

Kevin's mother is not involved in Kevin's care at this point. She is dealing with some issues of her own.

I have heard though the grapevine that keto(the diet) does wonders for people with mental disease. I have no idea if this is true or not, but figured I would just ask. So you think that diet could help with this disease?

I think there is some link between inflammation and schizophrenia. The research is far behind other fields, like cardiology. The gold standard now is Clozapine, and the best authority on this is Dr. Robert Laitman, https://www.amazon.com/MEANINGFUL-RECOVERY-Schizophrenia-Serious-Clozapine/dp/172748424X/ref=sr_1_1?ie=UTF8&qid=1542128772&sr=8-1&keywords=robert+laitman

This is Katherine -- I have heard about the keto diet being used in epilepsy treatment, but not for mental health disorders. I'll have to look into what research is out there.