Souls in the Hands of a Tender God -- Again

A month's worth of travel + new medication = time for a rerun.

This one has something to do with my NAMI Convention reporting.  It's a book report on Souls in the Hands of a Tender God.  I met the author, Craig Rennebohm at the Convention's presentation on FaithNet. 

First we pause for a word about FaithNet:

NAMI FaithNet is a network composed of members and friends of NAMI. It was established for the purposes of (1) facilitating the development within the faith community of a non-threatening, supportive environment for those with mental illness and their families, (2) pointing out the value of one’s spirituality in the recovery process from mental illness and the need for spiritual strength for those who are caretakers, (3) educating clergy and faith communities concerning mental illness and (4) encouraging advocacy of the faith community to bring about hope and help for all who are affected by mental illness.

NAMI FaithNet is not a religious  network but rather an outreach to all religious organizations.  It has had significant success in doing so because all the major religions have the basic tenets of giving care and showing compassion to those in need.

Next year's NAMI Convention will be in Seattle, Craig's homebase.  He set himself a goal of enrolling 132 congregations in FaithNet as part of bringing NAMI there.

One bit of feedback to Craig, if he's reading:  Congregations have a particular skill set that would be very useful at a NAMI Convention -- ushers and greeters.  Just a thought...

Meanwhile, with a few images added, from January 6, 2010 --
 
Souls in The Hands of a Tender God

Rush Limbaugh says that he experienced the world's best health care in the United States of America, and it does not need fixing.  I am glad for Rush that he was staying at a resort near a world class hospital for coronary care last month.  I imagine he has insurance to pay for the hotel-like accommodations, the angiogram and several other tests that failed to find the cause of his chest pains.

Given his public platform and his wide influence on American opinion and public policy, I wish Rush would expand his experience of health care in the United States of America.  He could shadow Craig Rennebohm for a few days to find out how health care works for other people.  Craig is the pastor of Pilgrim Church (UCC) in Seattle and, as part of their ministry, "companions" persons who are homeless and mentally ill.  With David Paul, Craig describes their quite different experiences in Souls in the Hands of a Tender God: Stories of the Search for Home and Healing on the Streets.

One Nation, Two Health Care Systems

The emergency personnel got Rush to the emergency room like snap!

That's not what happened to Sterling

Over months Craig built the trust of this man who camped in the church courtyard, surrounding himself with trash to protect himself from the evil spirits.  Finally, when the trash included highly combustible materials, Craig convinced him to go to the hospital.  Winter was coming.  The mental health professionals (MHPs) who showed up said they couldn't take Sterling in, because he was a voluntary patient.  They only picked up involuntary patients.  Sterling accused Craig of betraying him and fled the scene.  Craig couldn't find him until a month later, when he read of a homeless John Doe who died of exposure.

Rush was examined for days, still hospitalized, after they already knew he was not having a heart attack and not in immanent danger.

That's not what happened to Shelly

Shelly was seven months pregnant, with bronchitis and in a state of euphoria and grandiosity.  Craig brought her to the ER.  But she wasn't a good faith voluntary patient.  They believed she would check herself out so she could go accomplish her mission.  She didn't qualify for involuntary admission, because she wasn't a danger to herself or others.  What about her baby?  What about her bronchitis?  Bring her back when she develops pneumonia.

Karl Is A Vet

Karl's story is the clearest example of how health care in the United States of America is not working just fine.  Karl is a vet.  He was arrested for resisting arrest for vagrancy.  He just remembers being attacked, and later that the people in prison were poisoning him.  He was transferred to the hospital for two years, then back to jail to be released, no money, no meds, nothing but the clothes on his back.

Craig had been alerted.  He was a total stranger when he met Karl at the jail that morning and took him to breakfast.  Karl couldn't compute the question, White or whole wheat?

They continued to a clinic, where Karl couldn't understand or fill out the two-page form.  Since he wasn't in immediate danger, they sent him to the Department of Social and Health Services to apply for SSI.  Craig helped him with the six-page form there.  The social worker discovered he once received benefits.  So he had to get a statement from Social Security.

Social Security noticed Karl was receiving veterans benefits.  Next stop, the Veteran's Administration.  But the counselor there said they were a PTSD program and didn't take walk-ins.  He sent them a mile away to the Federal Building.  His file was in another state, so they had to get it transferred.

Meanwhile, the file was on computer, and said he was getting 50 cents a month, which was going to the hospital. (They could look up the information, but couldn't give him a copy until the file was received in a few days.)  Craig said, He's homeless and needs medication right now.  So he was sent to the VA hospital, then to the outpatient clinic in the bowels of the hospital.  Several kind strangers helped Craig find the way.

To get help at the outpatient clinic, Karl had to be admitted through ER, where they determined his illness was not service-related.  The waiting list for outpatient treatment was six months, and he might not get in, because he had been hospitalized only once.  The social worker suggested they try the clinic where they had started the day.  By now it was 6:30 and the clinic was closed.  They covered miles that day.  Karl spent the night in a homeless shelter, still not able to remember Craig's name.

That's where I will end the saga, though it is still several days from completion.  Small wonder that 83% of psychiatrists want a national health insurance plan, a higher proportion than any other specialty.  So many of their patients are homeless.

At Least I Have Insurance
 

And I thought I was having a hard time.  I have boatloads of people to help, support and advocate for me.  My salary is continued while I fill out applications.  I have a roof over my head and continued health insurance.

Most of all I have Helen, who asked me all the repetitive questions over several days, monitored my capacity, and terminated the work each day, usually after twenty minutes when I was getting overwhelmed.  My phone has been set to mute the disability company whose questions put me over the edge.  She screens my messages.  This process turned me into a pill-popping wreck last fall, and though my memory is not what it used to be, I do know my helper's name.

Rush, the system works well for you.  But not for the rest of us who live in the United States of America.

A Different Way

I commend to your reading Souls in the Hands of a Tender God by Craig Rennebohm with David Paul.  Craig uses his stories to help us see the face of Christ in these abandoned ones, and to frame his theology of God and what it means to be a human being in the sight of God.

We cannot make the journey alone.  None of us.  We are made for life together, made for community.  Those of us blessed with health and wealth may be tempted to forget that.  We may want to believe that we are self-made and assume that we have succeeded through our individual merits alone...  Illness - and especially mental illness - confronts us with the unavoidable truth of our frailty and finitude.  Illness underscores our fundamental dependence on the love and help of others...

Companioning

Craig describes the work that his community is doing, "companioning" people who are mentally ill.  Companionship can be described in terms of four practices: offering hospitality, walking side by side, listening, and accompaniment.  Let's consider these in detail...

And he tells the astounding story of a very different kind of system in Gheel, Belgium.  I will tell you about The Miracle of Gheel next week.  There is a different way to do this.

photo of Rennebaum from http://mentalhealthchaplain.org

photo of toast by Ranier Zenz and used under the terms of the GNU Free Documentation License

US-GSA-USAServices-Logo.svg Logo of the USAServices program, a program to help other government agencies with online communication, managed by the General Services Administration is in the public domain etching of Sysiphus by Max Klinger, 1914, in public domain book jacket from amazon.com  woodcut of Road to Emmaus by Julius Schnorr von Carolsfeld in public domain

 

Ignore/Laugh/Fight/ -- Mental Health Advocacy That Wins

If they don't want to employ you, if they are afraid of you, if there are four times as many of you in jail as in the hospital, then it's not just stigma.  It is prejudice and it is oppression.

The twentieth century offered a whole degree program in prejudice and oppression.  Others have made progress against what beat them down.  Though we are now stalled and falling behind, we can move forward when we adopt their methods.

The Map to Liberation

Mahatma Gandhi was not the first freedom fighter.  But he is the great theoretician.  He gave us the map.

First they ignore you.
Then they laugh at you.
Then they fight you. 
Then you win. 

Four simple steps.  The good news -- we have already taken the first.  Got that one down pat.

Liberation 101: 

We are in charge of the map.  The oppressor doesn't decide that oppression will end.  It endures until the oppressed decide that it will end.

What we have to do is provoke the next step.

Then they laugh at you.

Well, that's where we are stuck, because we are unwilling to be laughed at.  Last month's NAMI meeting was about Iowa's upcoming budget cuts.  Somebody said, When we complain, they say we are crazy.  I think she is a therapist.  She has that therapist look, if you know what I mean.

Therapists say the funniest things.  When we complain about how we are treated, they say we are crazy.

But we are crazy!  We start off ahead of all the other liberation movements that had to get crazy to take it to Gandhi's next step.

Think Martin Luther King.  Think Nelson Mandela.  Freedom?  People called them communists.  Either that or just plain nuts. 

Like these other movements, we have to find a spiritual taproot deep enough that we can endure being laughed at.  Just like the tree, standing by the water... 

The spiritual work will be impossible if we expect our care providers to lead.  They get twitchy if we talk spirituality.  I will address that work another time.  Right now I will sketch out how we break beyond First they ignore you, and move to Then they laugh at you.

What that means more precisely is, we have to do things to make people think we are nuts.  Like, DEMAND that we receive funding for research and treatment, DEMAND that we have the same access to health care as anybody else, DEMAND that we receive our health care in health care facilities, not in jails.

It's all about budget cuts right now.  Corporate tax cuts -- that's a given.  Corporations spent good money for our current crop of legislators, and they expect a return on investment.

So who will pay for these tax cuts, the people with mental retardation or the people with mental illness?  The Iowa State legislature has a committee that has asked us to decide.  Well, isn't that special.

We have to DEMAND that they change the rules of this game.  We have to REFUSE to play Survivor.  We have to refuse LOUDLY.

How?  African Americans sat down.  That is when they moved off Step One, when they REFUSED to be ignored any more.

So how about we lie down?


Lie In/Die In

Picture this.  The next Loonie Lobby Day at the state legislature, we don't get all showered and neatly normaled up and go have sincere conversations with our legislators who are really sympathetic (their brother has depression, so they know what we are up against, but their hands are tied by that pesky deficit...)

Instead, we stand in the rotunda and read off the names of their constituents who have committed suicide.  Each time a name is read, somebody falls down.  They have to step over our bodies to get out of the building.

Mental Health "Parity"
 
The Mental Health Parity and Addiction Equity Act would be better called the Swiss Cheese Mental Health Act.

1) Only large employers are affected.

2) If they can demonstrate it causes them financial hardship, they can get an exemption.

3) Parity is a laugh anyhow, if reimbursement rates are so low you can't find a provider who accepts your insurance.

4) The provisions of even this piss poor legislation that address reimbursement rates are now the top of the list on Congress's chopping block.

So off we head to Washington.  There are 13,000,000 million of us with serious mental illnesses in the US, including 5.7 million with bipolar, 2.4 million with schizophrenia and 7.7 million with PTSD.  The numbers add up to more than 13,000,000, because some of us get to double dip.  Piece of cake to pull together 34,000 to do a die-in around the steps of Congress, representing one year's worth of the deaths by suicide in the US.  We will drape American flags over the bodies of the vets.

Yes, we are dying out here.  Let them step over us.

How nuts are we to think we can turn around this systemic discrimination?  In this political climate?

Progress Report

Remember, When we complain about how we are treated, they say we are crazy?  By now some of my readers seriously want me to reconsider Seroquel.  Others -- if you are still reading, your doc wants you to up your dose.  This means we are making progress.

At some point, laughter becomes a cover for scared.  Then it's time for the next step.

Then they fight you.

Remember, this is our map.  We are the ones who push it forward.  Nobody else will.  And if I am scaring you, look at it this way.  If we aren't scared already, we'd have to be crazy.

Until we change our advocacy, we will continue to lose psychiatrists.  We currently have less than half the psychiatrists we need to provide a even a shoddy level of token med checks.  In Iowa, we have one fourth.  While demand is going up (think Iraq, think Afghanistan), supply is going down, as retiring psychiatrists are not replaced by new doctors.  Why go that far in debt to get through med school and then choose a specialty with the lowest pay scale on the block?

Until we change our advocacy, we will continue to lose community mental health centers.  Remember community mental health centers?  The places we were supposed to go when they kicked us out of the hospital?  They are disappearing already.  Here are the Kansas numbers.  You can find the same story for any state you google.

Until we change our advocacy, we will lose what parity was promised.  Again, all employers have to do to avoid it is demonstrate that it costs them money to provide it.

Until we change our advocacy, we will lose even the programs that jails now provide.  Why should criminals be coddled?

Desperate Times Call For Futile Gestures

What were we thinking?  That public demonstrations would make a difference to cold hard facts?  Were we nuts?  (By the way, what have we been thinking, that talking would make a difference?)

After the strategies designed for Then they laugh at you prove futile, we up the ante.  In place of our bodies, we substitute urns full of ashes and dump them on the floor of the assembly halls.

In 1987 AIDS activists entered the New York Stock Exchange.  Seven people unobtrusively chained themselves and a banner to the rail overlooking the trading floor.  At the opening bell they unfurled their banner and blew fog horns.  They drowned out the opening bell, and prevented traders from trading, while they brought national attention to their demand that pharmaceutical companies stop profiteering at the cost of their lives.

Wall Street is our audience, too -- all the businesses that insure some of their employees but not us, all the health care companies that pay reasonable reimbursement to some doctors but not ours.  How about we bring ambulance sirens? 

A Day Without Mental Health Care 

Next we head to Main Street.

The 2004 film A Day Without A Mexican imagined what would happen if one day everybody in the US from Mexico, Guatemala, Honduras, Nicaragua, et al disappeared.  Economic havoc, that's what.  A few years later, the movie inspired a political demonstration.  Workers stayed home for a day.  In some places, restaurants simply closed for the day, unable to serve their customers.

So last week the Wall Street Journal reported a survey by Workplace Options.  The survey discovered that 41% of workers polled had taken 4-9 days off work in the previous year to care for their own, their friends', their coworkers' or family members' mental health issue.  Half work in offices with no benefits, support or services to deal with mental health issues.

They think they can't afford to provide services?  They haven't a clue how much it already costs them not to. 

There you have it, a National Day Without Mental Health Care.  Everybody who has a mental illness or loves somebody who does -- stay home.  I'm thinking Monday -- to make that moon connection, and maybe even disrupt Monday Night Football?

Going To Jail

At this point, we are littering, destroying property and generally disturbing the peace.  We are going to jail.

Everybody on a three-month wait list for an intake interview,

Everybody on a two-year wait list for the judicial review of an SSDI application,

Everybody on a four-year wait list for sheltered housing,

Everybody who had been doing okay, but stopped taking meds when the day program closed,

Everybody who can't afford the copay for that third tier prescription anyway,

Everybody who doesn't have health insurance at all,

Everybody who is homeless,

Go downtown and set a trash can on fire.

We Need Some Coordination Here

No, not everybody.  Jail is not a good place for people with OCD, PTSD, nor Borderline.  You all, your part is to run right down to the courthouse, legal brief in hand, to make sure the police department fulfills its obligation to get the rest of us our meds.

Prejudice And Oppression -- Some Observations

This post has been about fighting oppression, the institutional arrangements that support an unjust system.  Oppression is weighty.  It is fierce.  It does not respond to reason.  Power yields only to power.  The strategies and actions I have described are the power of anger that has been organized.

Our families and our care providers are just as scared as everybody else of our anger.  So they will not help us here.  They want to address prejudice, not oppression. 

Prejudice is the irrational thoughts and feelings of individuals.  Well, prejudice also needs to be addressed.  There is work enough for everybody.  Think of differential diagnoses as differential skill sets for the differential tasks of freedom-fighting.

That's coming next week...

image of prison bars from microsoft
photo of Mahatma Gandhi in public domain 
flair from facebook
forest photo by Maylene Thyssen used under the GNU Free Documentation license
sit in at Walgreen's in Nashville, Tennesee, March 25, 1960, in public domain
photo of die in casualties by Brendan Themes and used under the Creative Commons Attribution 2.0 Generic license
fist graphic in public domain 

Health Policy of Sleep

Pharma/Research/Medicine Industrial Complex

A psychiatrist friend directed me to PharmedOut.org, a  source for all things seedy in medical research, medical education, and the sale of pharmaceuticals.  I don't need to repeat what you already know about ghost writing research articles, how pharma gets around restrictions on bribes by paying doctors to "teach," the sample scam, etc.  I am not spending time this week on what I didn't know until now about the editorial/advertising relationship in medical journals, or that the drug companies are the major subscribers to these journals and give them to doctors, and are the major purchaser of reprints (at inflated prices) to be distributed by drug reps to doctors.  But it is more of the same.  Just thought I'd mention it.

We go round and round about this.  Still, every research article ends with a cry for more funding, which will come from just one source.  Every doctor gets everything he/she knows about medications ultimately from just one source.  Every friend and family member who wants to help repeats the message taught by one source -- Keep trying.  Translation: keep buying drugs.

Addicted To Big Pharma

Weighing Costs and Benefits Part IV: Costs

Some people quit taking meds that their doctors believe will relieve their symptoms of mental illness.  Why?

Because the meds don't work, because they can't afford them, because the meds make them sick.

Manifesto:

For any of these reasons, people who quit are making intelligent decisions in their own best interests.

On The Other Hand 

Sometimes the meds do work.  Sometimes people have decent health insurance with good drug coverage.  Sometimes the side effects are not as bad as the disease.  In that case, those who quit their meds are stupid.

Let's just get that right out front.

Moving On To The Costs

Today my series on weighing costs and benefits turns to the costs.  The costs do not tell you whether you should try a medication.  They simply give you the odds.  It is up to you to decide how you want to play the odds.  I calculate the odds based on the numbers of those who quit.  Those who consume have the best information about costs, what actually happens when they put these chemicals in their own particular test tubes.

How Many Of Us Are Noncompliant?

Out of 100 prescriptions that providers write, 10 consumers never consume.  They don't show up at the pharmacy at all.

28 consumers quit within the first month.  That includes those first 10.

50 quit within 60 days.

72 are outta there at six months, 78 within the year.

That leaves 22 compliant consumers.

How Do Noncompliant Consumers Explain Their Decision?

10 out of the 78 don't.  Providers failed to close the sale.  Providers would be interested to know why these 10 are pharmacy no shows, because it might help them improve their pitch.  Their assumptions are that it was because the consumers didn't understand, or the providers didn't establish trust, or that good old back up -- stigma.  But often, consumers don't report their decision.

We could invent reasons, which might be fun, top ten list, that sort of thing.  The drinking buddy said, Buck it up.  Real men don't get depressed.  The transmission fell out of the car on the way to the drug store.  My favorite -- the primary care physician said, Are you kidding?  With your blood glucose and lipid levels?  Does this so-called doctor even own a blood pressure cuff?  However, all this speculation is just that.  These 10 do not give us information about the costs of taking the medication, because they never take it.

So now we have 68 consumers who quit after they tried the meds.  AK Ashton et. al. actually asked them why.

30 (out of the 90 who actually filled the prescription) say they quit because they could not tolerate the side effects.

30 say the medication was not effective.

That already adds up to 70 nonconsumers, counting the nonstarters and leaving eight who quit for other reasons.  I will suggest some of these other reasons, and you will have to come up with the odds yourself that any of them might put you among these 8.  (They may have reasons similar to the 10 who never started.)

And by the way, these numbers vary by how many different medications the consumer has already consumed, which primarily affects the efficacy number.  They also vary by which medication is currently being considered, primarily effecting the side effect number.

We don't have all the numbers we need.  Somebody needs to be collecting this data.  A consumer group, looking at real world data over the course of a year, not the guys with 6-8 weeks of information, seeking FDA permission and doctors' cooperation to sell pills.  But the algorithm itself will work for whatever the numbers turn out to be. 

Let's Start With Side Effects

30 of the 68 who consumed and quit say they quit because of side effects.  The clinical trials, lasting eight weeks or so, report much lower numbers.  The numbers the providers give you are from the clinical trials.

The common belief among providers is that they could improve compliance by giving consumers more information up front about side effects.  Small isolated studies sometimes confirm this over the short haul.  But this belief does not stand up to more research and more time.

Up front discussion of side effects can give the consumer strategies for dealing with insomnia, reducing nausea, preventing falls when they get out of bed.  These are the side effects we notice immediately.  Maybe they are tolerable if you have social supports to get you through the roughest first weeks.  Sometimes your body does  acclimate, and the immediate side effects become less bothersome.

But sometimes these strategies don't work.  Social supports wear out.  Mom has to go home and stop helping you with the kids.  You run out of sick leave.  The body does not adjust.  And sometimes these side effects are indications that you are taking the wrong medication!

But the major side effects appear later.  Which are the most bothersome?  The results: weight gain (31%), erectile dysfunction (25%), failure to reach orgasm (24%) and fatigue (21%).

Weight gain -- a few pounds in the first few months are not a problem.  You hardly notice.  But over the months, when you are moving from overweight to obese, you get a reality check on what this medication really costs.  Morbid obesity takes 8-10 years off your life.

Tell that to your psychiatrist when you complain and he/she says you have to weigh your costs and benefits.  Your doctor may not even know about how serious the health risks of obesity are.  Obesity even increases the risk of dementia.  But psychiatrists treat psychological problems with pharmacology.  They do not treat your heart, pancreas or liver.

Then there are the sexual side effects.  When you started the medication, you weren't getting much anyway.  That was one of the symptoms -- loss of interest in formerly pleasurable activities.  But six months later when you're not getting any, you (and your partner) recalculate your costs and benefits.

Hence, these noncompliance numbers go up over time.

Side Effects In The Algorithm

The major competition between makers of psychotropic medications has always been on this side effect issue.  It turns out, we just won't keep taking stuff that makes us feel worse.  So sometimes you can find studies that pit one against the other and get real numbers about side effects.

STAR*D found that in just 8 weeks, a combo of lithium/sertraline (Zoloft) got an intolerable rate of 45%, 2-5 times any other treatment.  Effectiveness rate -- 9%.  I wonder how many of the 91% who didn't get better would have been better off if they had taken nothing at all.

Or to put a finer point on it, did lithium/sertraline make matters worse?  They didn't test against placebo, so we don't know.

If the odds of harm are five times the odds of help, I will give it a pass.  That is like rolling the dice, looking for one particular number.  Only it's not dice; it is my body.  That is my personal decision, made after my eighth trial.  It is up to you how you play the odds.

For the sake of the algorithm, SE means the odds that you will quit taking this medication within a year because of side effects.

Efficacy -- What If It Just Doesn't Work?

We already discussed effectiveness in detail on September 2, Weighing Costs and Benefits Part II: Benefits.  Go back there for the details.  It makes more sense if you know the back story.  In summary:

Efficacy for Number of Present Trial (E#PT) means how many people got better with this med after they tried a number of others that didn't work.  Non-Spontaneous Recovery Rate (NSR) means how many people would not have gotten better if they had simply waited for the depression to go away on its own.  Efficacy for Number of Present Trial times Non-Spontaneous Recovery Rate equals Short Term Benefit (STB).  Those are the odds that it will work.

Or, E#PT X NSR = STB.

The abbreviations are there to make me look smart.  Which, as a matter of fact, I am.  Some days, I can make the smart parts of my brain connect  again and actually work smart.

Another way of looking at it: STB is a number between 1 and 100.  That many times out of a 100 are the odds that you have come up a winner.

So then the odds that the medication will not work are 100 minus Short Term Benefit.  We will call that Not Effective (NE).  100 - STB = NE.  You have wasted your time, and are more discouraged than ever.  Bummer.

Now you may have noticed, the algorithm calculates the Short Term Benefit for eight to twelve weeks.  And the Short Term Cost refers to one year.  Why the difference?  Because you will likely be one of the early quitters (50%) if you don't get relief by twelve weeks.  And if you do get relief by then, you are likely to keep taking the medication for a year.  It may quit working for you eventually.  But you are probably good to go for a year.  Hence, twelve weeks for STB and twelve months for STC are probably equivalent measures.

Efficacy -- What About Those Who Quit Before They Gave The Medication An Adequate Trial?

I did not consider how many reported that they discontinued because the medication was ineffective, the 30 out of 90 that Ashton, et al, discovered in their survey.  This number is not helpful, because some of these 30 quit before the full 60 days needed to determine efficacy.

Instead, I used the efficacy numbers reported from the clinical trials.  As a result, those 8% discussed below is a larger group.  It would include the early quitters, because some of them might have gotten better if they had been more patient.

But these numbers are for illustration purposes only.  The algorithm is designed to be general, so that you can insert whatever the numbers turn out to be.

If you quit simply because the medication does not work faster than it works, and for no other reason, then you go into the stupid category.  Just to get that right out front.

Other Costs

8% (plus) quit taking the medication primarily for other reasons.  I expect that money, stigma and trust are the the big ones, with stupid in there, too, as stated above.

Money

Let's face it.  These medications cost money.  There are two costs to consider.  The first is the pills themselves.  The provider may provide you with samples, if yours is the newest wonder drug being promoted this week.  The samples likely last for two or three weeks.  This is good, if it helps you determine early on that there is no way you can tolerate the medication, even long enough for some of the side effects to become less troublesome.

On the other hand, it does not help you determine whether the medication will be effective.  That takes more time and your own money, a lot of it, if yours is the newest wonder drug being promoted this week, which you can count on, if you have failed to prove your provider a genius by getting better with his/her first or second choice.

If you have a good drug benefit, cost of medication may not be a major issue.  I now get my generics for free.  I represent a very, very small portion of the U.S. population.

I used to have insurance with a high deductible and mediocre drug benefits.  After the samples ran out, I paid $120 for a two month supply from a company that required I buy from them by mail order.  By the time the pills arrived, I had already discovered I couldn't tolerate the med.  I never even opened their bottle.  Meanwhile, I had to pay through the nose at my local pharmacy for the two weeks it took me to taper off.

In addition to the medications, you will pay for medical management, trips to the provider who will monitor your condition and tweak the chemistry experiment.

Again, these costs will vary by insurance plans and whether you have insurance at all.  With my current insurance, I pay $5/visit.  In my previous plan, I paid $40.  If I had no insurance at all, the cost would be $135.  And I see my doc every six weeks on average.

I cannot assign a number to the odds that you will quit a medication because of how much money it will cost you.  That is your call. Out of 100, what are the odds that you will quit because you cannot afford it?  We will call that $$$ in the algorithm.

Stigma

Okay, if you have made it this far through the Costs and Benefits series, you ought to be motivated enough to resist those who shame you (including yourself) for relying on a pill, for being weak, for being sick... whatever garbage they throw at you and you throw at yourself.  Please let's get over it.  I hope your stigma number is low.  But again, that is your call.  Out of 100, what are the odds you will quit for reasons of stigma? -- STG.

Trust

Next, out of 100, what are the odds that you will quit because you cannot find a provider you trust with your body, or because you think the pharmaceutical industry is corrupt? -- TR.

Stupid

Stupid is a side note.  Providers prescribe the medication because they already believe that the benefits outweigh the costs.  So they expect the stupid category is a large proportion of the noncompliers.   Only they call it confused.

Stupid is irrelevant to the algorithm, which is designed to weigh costs and benefits.  So stupid (or confused) is not in there.  Like stigma, stupid can be fixed.  But it is not a cost.  It is a prior condition.

Down And Dirty Costs

So now we simply add the odds of each of these costs together:

Side Effects plus Not Effective plus Money plus Stigma plus Trust (lack thereof) equals Short Term Costs.

SE + NE + $$$ + STG + TR = STC.

So How Do You Decide?

STC versus STB give you the odds.  Once more I repeat, they do not give you your decision.

We will look at a couple other issues and pull this all together in our next installment.  Whew.  My brain is about to explode.

Flair from Facebook

Clipart from Microsoft

Photo of die by Roland Scheichder, in the  public domain

Photo "Solution" by Salvatore Vuono
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OMGThat'sWhatTheySaid -- Noncompliance

Before I move to the costs side of Weighing the Costs and Benefits, I pause to consider the concept of noncompliance.

Noncompliance is not one of the best candidates for the OMG! Award, because I cannot point to specific usage -- it is ubiquitous.  On the other hand, it is precisely what this award is about, going to the heart of how language frames thought.  In this case, the word simultaneously names and creates a relationship between consumer and provider.

I don't particularly care for the terms consumer and provider when it comes to health care.  But I use them here, where they distinguish those who consume, literally put pills inside our mouths, from those who fill out those little slips of paper that provide the pills.  Providers replaces pushers, a term I used in a fit of pique last week.  This week, I have resolved to be more polite.

Consumers are told to weigh our costs and benefits.  When we comply with these instructions and, having done so, decide that the costs exceed the benefits, and therefore decide not to consume, then providers call us noncompliant.  What exactly is communicated here?

What is noncompliance, anyway?

I went to the dictionaries.

According to Webster's New World College Dictionary, noncompliant means failure to comply; refusal to yield, agree, etc.

MedicalNet.com puts it this way: Noncompliance: The failure or refusal to comply: the failure or refusal to conform and adapt one's actions to a rule or to necessity.

Don't you hate it when one word is defined by another word that still needs to be defined?  I went back to Webster's, and got these alternatives. 

COMPLIANCE

1: a -- the act or process of complying to a desire, demand, proposal or regimen, or to coercion; b -- conformity in fulfilling official requirements;

2 : a disposition to yield to others;

3 : the ability of an object to yield elastically when a force is applied.

So.  One has a desire, demand, proposal, regimen or official requirements, and may have access to force or coercion.  The other fails, refuses, or does not yield.  I wonder which is which? 

Scientists Study Noncompliance

Providers are disconcerted when consumers fail to consume, and spend a lot of time trying to figure out why.  By the way, this link goes to a review of literature by Alex J. Mitchell, a consultant and senior lecturer in liaison psychiatry at the Leicester Royal Infirmary in the United Kingdom, who receives no compensation from pharmaceutical companies.  I often link to reviews of literature.  Their authors read a jillion studies, including ones to which I do not have access.  Then they summarize the highlights of whatever consensus may have come from these studies.  Reviews of literature put a lot of information in one place.  Mitchell has 59 footnotes (okay, not a jillion -- I exaggerated), in case you want to look up the research behind a particular point.

So scientists speculate, do research, write articles, hold conferences and  train residents, all in efforts to increase compliance.  Their hypotheses about the causes of this behavior include inaccurate beliefs about medication, lack of insight into ones illness, lack of education in general, cognitive impairment, weight gain, sexual dysfunction, and poor patient/doctor relationship.

Mitchell even developed a flow chart to categorize the behaviors of patients: full, partial and excess adherence, intentional and unintentional non-adherence, for external or internal reasons, and various combinations of these.  Not telling your doctor that you have stopped taking your medication is called covert discontinuation, and in other places, covert noncompliance -- that word again, this time with the naughtiness of covert.

A friend noticed that Mitchell missed a category on his flow chart, the consumer who is compliant with other medications, but consistently, though inadvertently, forgets one particular medication that she thinks is the source of uncomfortable side effects.  That could be covert internal unintentional partial non-adherence.  Or would it be covert internal intentional partial non-adherence, covert here meaning that her intention is undisclosed to herself?  The flow chart matters, because having divided noncompliant consumers into subgroups, then they test different strategies to bring different subgroups back into compliance.

Some notice the non-PC nature of the word noncompliance.  While most articles I found use the term, occasionally, as in Mitchell, I come across non-adherence.  Non-adherence is supposed to imply a mutual agreement between two parties about what the treatment regimen will be.  Other articles use the terms interchangeably, recognizing a fig leaf for a fig leaf.  After all, presumably the consumer and the provider have agreed together about the regimen to which the consumer will adhere.  Only notice, if the consumer does not adhere, then he/she has violated an agreement, or broken a promise.  Still naughty.

Matthew Keene, who serves as an adviser or consultant to GlaxoSmithKline, Cephalon and Pfizer, might have merited the OMG Award on his own, for Confusion and Complaints: The True Cost of Noncompliance in Antidepressant Therapy.  But why pick on just him, because, like I said, this language and weltangshauung (as they say in philosophy -- it means world view) permeates the literature?

Why Don't Consumers Consume Their Antidepressants? -- What the Providers Say

Mitchell cites a study indicating that 10% of those prescribed antidepressants never show up at the pharmacy at all.  Keene's figures are that 28% quit within the first month, 50% within 60 days, and only 28% are still in compliance at six months.  Keene asks, Why do patients prematurely discontinue antidepressants, medications that may improve and perhaps even save their lives?  His answer -- one of the 3 C's of noncompliance: confusion, costs, and complaints. 

Confusion, costs and complaints.  Notice that each of these is patient-centered.  He didn't say incoherent, financially foolish and picky.  But they are implied in the rest of the article.  Notice also that he did not describe the phenomenon from the patients' perspective.  He could have said inadequate communication, ineffective or intolerable medications and inaccessible health care and still preserved his clever alliteration.

Why Don't Consumers Consume Their Antidepressants? -- What the Consumers Say

What if patients wrote these articles, or were even consulted?  Actually, they have been consulted.

44% consumers who discontinue medication before their providers would like (the research calls it prematurely) say they did so because it made them sick, most commonly nausea, headache, drowsiness, and increased anxiety.  Well, duh.

I don't know.  Has it occurred to anybody besides me that we could solve this puzzle and put all that research time and money to better use if we gave the scientists a turn as the lab rats?

Another 44% consumers report that they discontinue because the medication is not effective.

That leaves 16% unexplained.  I will get back to them when I discuss costs more thoroughly.

I sorted through lots of these studies before it finally occurred to me to compare rates and reasons.  Noncompliance at six months is 72%.  Back to NIMH's STAR*D study, when trial subjects received compensation, free medical care, extensive information and regular support, antidepressants were ineffective for 50% of those who took them and intolerable for 16%, a total of 66%. -- That was the first trial.  By the third trial, medications were ineffective for 83% and intolerable for 26%, more even than the total.

What I want to know is just how many people take antidepressants when they make them sick and/or don't work anyway?  I personally know three.  Consistent with research findings, that better educated consumers are more compliant, these three have among them a BA, a Masters and a PhD.

Is there something going on here that is not about good medicine?

Rethinking Consumer Noncompliance

Psychiatrist Allan Showalter, Rethinking Patient Noncompliance, challenges the premises behind repeated and repeated research on noncompliance, a behavior which found across other diagnoses, not to mention life issues ranging from flossing to portfolio diversification, as well.  Here is the video of an Iowa Hawkeye football player on a motorcycle, one week before the game with our biggest rival.  A football player.  No helmet.  Despite repeated pleas of Kirk Ferentz, the Hawkeye coach.

I do recommend that you follow Showater's link for the novelty of his thinking.  One example: Nothing in [the definition of noncompliance] implies a moral obligation on the part of the patient to follow those recommendations or to the clinician who makes those recommendations to enforce them.

Countertransference

Yuval Melamed and Henri Szor, The Therapist and the Patient: Coping With Noncompliance, focus on the relationship between the patient and therapist as the source of noncompliance, rather than taking patients at their word.  On the other hand, they use a word that I did not find in any other article.

Countertransference.  Okay, ignoring the definition that includes the word transference, [again -- so irritating when dictionaries do that], Webster's defines countertransference as the complex feelings of the psychotherapist toward the patient.

Melamed and Szor think that noncompliance arouses reactions in therapists who feel that this behavior exemplifies a lack of trust in them and in the corpus of knowledge they represent.  I think that takes us part way there.

It is the therapist's job to manage the dynamics of countertransference in what is an unequal power relationship. That management would include not allowing the therapist's feelings toward the patient to misinterpret the patient's experience as hostility and thus misdirect the intervention.

I have not found evidence that providers of medication ever explore the impact of their own feelings on their treatment of consumers, at least in the arena of noncompliance.  Countertransference is a regular part of psychotherapists' training.  If it is ever mentioned in medical school, none of the literature gives evidence that the lesson sticks.

Weighing the Costs and Benefits -- Progress Report

Sorry about all the numbers in this post.  I have not found in the research any effort to measure the costs side of you have to weigh the costs and benefits that is not filtered through the concept of noncompliance.  So the algorithm will suffer from research that is compromised by its initial assumptions.  Thta is why we had to start with the OMG Award.

Next week, the Muppets will give us a break, while my brain does a bunch of number crunching.

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Prozac is Talking -- Anybody Listening?

Anybody know this story?  You get a new prescription.  Responsible consumer that you are, you read carefully the PI [prescribing information] sheet.  It says, "If xx happens, call your doctor immediately."  Sure enough, xx happens.  You call your doctor, who does not call back.  After persistent calling over several days, the doc says, "Really?  We'll keep an eye on it."

The other day, I had a nosebleed that wouldn't stop.  The PI sheet says my new med can interfere with platelets, admittedly not very high on the list of side effects.  But I contacted the doc.  "Really?"  she said, "Where did you hear that was a side effect?"  My answer, "On the PI sheet you gave me."  It turned out, my blood work was fine, and the humidifier took care of the nosebleeds.

No harm done.  Right?

On the other hand, five years ago my GP had me on Prozac.  After a couple months, I couldn't sleep, was irritated, agitated, couldn't concentrate, had thoughts of harming myself and others.  The PI sheet said I should tell my doctor.  My doctor increased the dose.

Thus began a series of antidepressants, and a downward spiral that has ended with disability.

The Miracle of Gheel -- Humane Treatment for Mental Illness

It was seventh century Ireland.  The Queen died.  King Damon's grief was so deep that it moved into depression and then psychosis.  He thought his daughter Dymphna was his queen.  Rather than submit to his advances, Dymphna fled to Belgium, to the town of Gheel.  But her father followed.  When she again rebuffed him, he killed her, cut off her head.  Dymphna was buried in the local church.

Six centuries later, her coffin was found during renovations.  Signs on the coffin demonstrated her holiness.  She began to be venerated.  Cures of the sick were attributed to her.  She was canonized in 1247 as the patron saint of the mentally ill.

Okay, here the one last bit of unrecovered Catholic in me demands to be heard, to note Rome's fascination with girls who prefer death to rape.  Even as a nine year old, that made me uncomfortable.

Moving on.  People came to Gheel for healing.  Many brought family members who were mentally ill.  Sometimes they left them there.  The priest housed these abandoned ones next to the church.  When the job of caring for them became too much for him, townspeople started bringing in food.  They built a hospital in the 14th century.  When it was full, the real miracle of St. Dymphna occurred, or rather, began.  Townspeople took some of the patients into their own homes, reserving the hospital only for those most ill.

All across Europe, people with mental illness were thought to be possessed.  They were exorcised, tortured and burned at the stake.  But not in Gheel.

Imagine it!  A psychotic foreigner commits a terrible deed.  But the townspeople do not close the borders.  No, they open their homes.

And they still do.  Through plagues, wars, revolutions, recessions, depressions, during the Napoleonic "Reform," when all the mentally ill people in the country were ordered into one big hospital, during the Nazi occupation, with their "final solution" for mental illness, during the latest reform when the U.S. of A. was/is dumping all our mentally ill people out of the hospitals, onto our streets and into our jails, the people of Gheel developed and continue genuine community-based mental health care.

Today, there are 700 foster homes for 1000 people with mental illness.  A person will enter the hospital for evaluation and stabilization.  S/he meets the psychiatrist, psychologist, nurse, social worker and family practitioner who staff one of the five neighborhood community mental health centers.  Each of these staff people spends half a day each week in the hospital, so everybody gets to know everybody.  The potential foster family and patient meet at the hospital, then over tea at home, then over a meal, then over a weekend before placement.  Outpatient care, medication monitoring and therapy continue at the neighborhood center.  If possible, the biological family participates in the treatment plan.

Once part of the family, the person shares in family activities, chores and church.  The church doesn't have special bible studies, services or programs for the mentally ill.  They are fully integrated, regular readers, members of the choir, ushers, etc.

What if the person's symptoms flair?  "We say s/he is having a bad day."  Because the person lives in a family, not on the streets or alone in an apartment, problems are caught and addressed early, not after getting fired or evicted or arrested or in a bloody mess.  If needed, s/he can go back to the hospital for a while.  In fact, the hospital is not the place of last resort.  When the foster family has to go out of town, say, for a funeral, the person can stay at the hospital.  There is continuity of care.  There is care.

Three years ago I wrote a chapter for Deep Calling called, "If This Were Cancer."  I detailed all the ways that hospice patients receive the support of others, and that people who have suicidal depression do not.  "If this were cancer, there would be casseroles..."  I imagined the total collapse of care for the mentally ill, under the weight of our crazy health care system.  In fact, it's happening as I write.  I imagined that the Church would step in to meet a desperate need, to create hospice for the mentally ill, as the Church originally created hospice and hospitals.  I claimed that the Church has the resources to organize for such care on a local basis.  It has the faith to imagine such a thing, the love to cast out fear, and the values to demand it.  I will have to rewrite that chapter.  I didn't know it had already been/is already being done.

I am ever so grateful to Janet, whose last name I don't remember, who gave me Souls in the Hands of a Tender God: Stories of the Search for Healing and Home on the Streets by Craig Rennebohm, the source of this story.

Lord God, Who has graciously chosen Saint Dymphna to be the patroness of those afflicted with mental and nervous disorders, and has caused her to be an inspiration and a symbol of charity to the thousands who invoke her intercession, grant through the prayers of this pure, youthful martyr, relief and consolation to all who suffer from these disturbances, and especially to those for whom we now pray. (Here mention those for whom you wish to pray.)

We beg You to accept and grant the prayers of Saint Dymphna on our behalf. Grant to those we have particularly recommended patience in their sufferings and resignation to Your Divine Will. Fill them with hope and, if it is according to Your Divine Plan, bestow upon them the cure they so earnestly desire. Grant this through Christ Our Lord. Amen. 

Dymphna's feast day is May 15.

The Best Health Care in the World

Rush Limbaugh says that he experienced the world's best health care in the United States of America, and it does not need fixing.  I am glad for Rush that he was staying at a resort near a world class hospital for coronary care last month.  I imagine he has insurance to pay for the hotel-like accommodations, the angiogram and several other tests that failed to find the cause of his chest pains.

Given his public platform and his wide influence on American opinion and public policy, I wish Rush would expand his experience of health care in the United States of America.  He could shadow Craig Rennebohm for a few days to find out how health care works for other people.  Craig is the pastor of Pilgrim Church (UCC) in Seattle and, as part of their ministry, "companions" persons who are homeless and mentally ill.  With David Paul, Craig describes their quite different experiences in Souls in the Hands of a Tender God: Stories of the Search for Home and Healing on the Streets.

The emergency personnel got Rush to the emergency room like that [snap!]  That's not what happened to Sterling.  Over months Craig built the trust of this man who camped in the church courtyard, surrounding himself with trash to protect himself from the evil spirits.  Finally, when the trash included highly combustible materials, Craig convinced him to go to the hospital.  Winter was coming.  The mental health professionals (MHPs) who showed up said they couldn't take Sterling in, because he was a voluntary patient.  They only picked up involuntary patients.  Sterling accused Craig of betraying him and fled the scene.  Craig couldn't find him until a month later, when he read of a homeless John Doe who died of exposure.

Rush was examined for days after they already knew he was not having a heart attack.  That's not what happened to Shelly, seven months pregnant, with bronchitis and in a state of euphoria and grandiosity.  Craig brought her to the ER.  But she wasn't a "good faith" voluntary patient.  They believed she would check herself out so she could go "accomplish her mission."  She didn't qualify for involuntary admission, because she wasn't a danger to herself or others.  What about her baby?  What about her bronchitis?  "Bring her back when she develops pneumonia."

Karl's story is the clearest example of how health care in the United States of America is not working just fine.  Karl is a vet.  He was arrested for resisting arrest for vagrancy.  He just remembers being attacked, and later that the people in prison were poisoning him.  He was transferred to the hospital for two years, then back to jail to be released, no money, no meds, nothing but the clothes on his back.

Craig had been alerted.  He was a total stranger when he met Karl at the jail that morning and took him to breakfast.  Karl was stymied by the question, "White or whole wheat?"  They continued to a clinic, where Karl couldn't understand or fill out the two-page form.  Since he wasn't in immediate danger, they sent him to the Department of Social and Health Services to apply for SSI.  Craig helped him with the six-page form there.  The social worker discovered he once received benefits.  So he had to get a statement from Social Security.  Social Security noticed he was receiving veterans benefits.  Next stop, the Veteran's Administration.  But the counselor there said they were a PTSD program and didn't take walk-ins.  He sent them a mile away to the Federal Building.  His file was in another state, so they had to get it transferred.  Meanwhile, the file was on computer, and said he was getting 50 cents a month, which was going to the hospital. (They could look up the information, but couldn't give him a copy until the file was received in a few days.)  Craig said, "He's homeless and needs medication right now."  So he was sent to the VA hospital, then to the outpatient clinic in the bowels of the hospital.  Several kind strangers helped Craig find the way.  To get help at the outpatient clinic, Karl had to be admitted through ER, where they determined his illness was not service-related.  The waiting list for outpatient treatment was six months, and he might not get in, because he had been hospitalized only once.  The social worker suggested they try the clinic where they had started the day.  By now it was 6:30 and the clinic was closed.  They covered miles that day.  Karl spent the night in a homeless shelter, still not able to remember Craig's name.

That's where I will end the saga, though it is still several days from completion.  Small wonder that 83% of psychiatrists want a national health insurance plan, a higher proportion than any other specialty.  So many of their patients are homeless.

And I thought I was having a hard time.  I have boatloads of people to help, support and advocate for me.  My salary is continued while I fill out applications.  I have a roof over my head and continued health insurance.  Most of all I have Helen, who asked me all the repetitive questions over several days, monitored my capacity, and terminated the work each day, usually after twenty minutes when I was getting overwhelmed.  My phone has been set to mute the disability company whose questions put me over the edge.  She screens my messages.  This process turned me into a pill-popping wreck last fall, and though my memory is not what it used to be, I do know my helper's name.

Rush, the system works well for you.  But not for the rest of us who live in the United States of America.

I commend to your reading Souls in the Hands of a Tender God by Craig Rennebohm with David Paul.  Craig uses his stories to help us see the face of Christ in these abandoned ones, and to frame his theology of God and what it means to be a human being in the sight of God.  We cannot make the journey alone.  None of us.  We are made for life together, made for community.  Those of us blessed with health and wealth may be tempted to forget that.  We may want to believe that we are self-made and assume that we have succeeded through our individual merits alone...  Illness - and especially mental illness - confronts us with the unavoidable truth of our frailty and finitude.  Illness underscores our fundamental dependence on the love and help of others...

Craig describes the work that his community is doing, "companioning" people who are mentally ill.  Companionship can be described in terms of four practices: offering hospitality, walking side by side, listening, and accompaniment.  Let's consider these in detail...

And he tells the astounding story of a very different kind of system in Geel, Belgium.  I will tell you about the miracle of Geel next week.  There is a different way to do this.

The image is from http://mentalhealthchaplain.org