Not Meant to Be

March 13, 2014

I don’t believe in the phrase “it was meant to be” or “this is all happening for a reason” because I can’t believe that people are meant to be hurt.  I can’t believe that children are meant to starve to death or women abused.  I do think that when something happens, even though it’s not meant to be, we have an opportunity to create change.

If you follow me on twitter you will see that I’ve been tweeting a lot about my experience with St. David’s HealthCare.  I have never seen or experienced so many medical errors and medical record errors in one person’s case.  What astonishes me aren’t the individual errors alone but the number of errors – a true systems failure where there were inexcusable errors at every single point of care.  Honestly, it is amazing that I am physically okay considering the errors made – the potential that I could have died.  But the mental recovery is ongoing as I process my personal experience and consider how to use the opportunity to ask for change in the medical system.

As I write my story with great personal detail the pages accumulate to nearly 30 pages.  I recount that in my stay from February 17-21, 2014 I had a doctor who nearly sent me home with an infection that perhaps could have left me in sepsis, I was left in my room bleeding because my IV fell out, and another doctor sent me home with a prescription for a medicine I am allergic to (which Target pharmacy filled though they should have known my allergy).  I recount having to return to the ER for readmission on February 22, 2014 and having to beg – nearly screaming – for a phone the hallway to contact a friend and patient advocate – Allison Peacock – to come help me, medications not being administered at the right time or in the right dose – or for that matter the correct medication at all, and providers falsifying records.  I recount since then the errors I’ve found in my medical records and then caught a serious HIPAA violation where the hospital sent me someone else’s records.  All told, I am astounded beyond belief at all that has gone wrong in the past month – quite literally my worst nightmare.  None of it was meant to be.

But beyond my personal story is the story for change that needs to occur.  This was a failure, as I said, at every level.  As I process my experience, I am hoping to find the strength to write on the broader scale about the overarching issues that affected my care and that affect many patients entering the healthcare system.  These include:

  • Access to medical care: Many states chose not to expand Medicaid, thus leaving many low income individuals such as myself uninsured and do not qualify for Obamacare.  Texas was one of those states. I am only qualified to receive care in an emergency situation (by the grace of EMTALA).
  • Hospitalists: I once wrote how I had mixed feelings about hospitalists. My feelings are no longer mixed, I do believe their presence decreases quality of care and increases risks to patients.
  • Continuity and coordination of care: How there  was no continuity or coordination of care between multiple ER doctors, multiple Hospitalists, a surgeon, an anesthesiologist, nurses, specialists, pharmacists, and other providers.
  • Health IT: Why was the Meditech system not properly flagging my allergy to the doctor? Are there usability issues? Was there a rush to implement a system to get money under the Meaningful Use program?
  • Hospital readmissions: Medicare is keeping a close eye on readmission rates. But it’s not just the reason for readmission that matters, it is also the process of readmission. When I returned to the ER, no one in the hospital realized I’d been discharged less than 24 hours before and all of my information was lost.
  • Recognizing and addressing mental health issues in the hospital: Most patients are anxious upon coming into an ER, some of us panic when the care goes so badly – yet providers are not equipped to deal with these issues at any level.
  • Hospital acquired infections: from MRSA to C. diff. to ESBL to even the flu – what protocols are being implemented for patient safety and how effective are they?

Nothing will take away what happened to me.  There is no litigation to file, no cause of action to sue someone.  Apologies, though appreciated, will only amount to so much before they seem empty.  Still, good can come from this if, at every level, responsibility can be taken to make true change.

This was not meant to be. This does not have to be the story of another patient.


Many thanks to the ePatients who have been supporting me throughout: Regina Holliday, Scott Strange, Carly Medosch, and Allison Peacock.

Many more thanks to my mother, a pharmacist in Colorado, who realized the doctor prescribed me a medication I’m allergic to and stopped me from taking it. (The hospital and pharmacy should be thanking her too.)

My Abuser Found Me Online

October 27, 2013

Abuse is a serious worldwide health and human rights issue.  According to the World Health Organization 35% of women worldwide have experienced either physical and/or sexual violence.  This of course does not include abuse towards children or men.  It does not include emotional abuse.  And in our age of technology, it does not include an ever more prevalent issue of abuse through the internet.

Almost 13 years after leaving my abuser, last night he found me and contacted me through Google+.  I found myself feeling the victim again.

When I left my abuser, I hid.  I hid where I lived and what I did.  I hid my online presence.  I did not want to be “googleable.”  I would frequently check to make sure I wasn’t easily searchable. But as my voice grew stronger and my professional and personal life took me in new directions, I didn’t want to hide anymore.  I knew I had something to say as an ePatient, as a defender of health as a human right.  I wasn’t willing to hide.

The flip side of this exposure means I cannot hide from even my abuser.  Thus the abuse in a sense continues, the emotional abuse perpetrated through a simple hangout request.  It’s a trap, not a peace offering.  It is typical of the cycle of abuse and (forgive my generalization) a narcissistic personality disorder that will never recognize the pain he inflicted – the years of nightmares and questioning my fault, the years of looking over my shoulder.

In a moment, my safety is shattered, as is wont to happen in an age where disappearing and blocking are not an option.

What could I do?  I’ve found few resources on this subject.  There are articles on cyber bullying and cyber stalking.  They offer tips to change your email address or contact system administrators.  Knowing the policies of social media, rarely do they respond to requests to block abusers using their sites.  I have tried, I have seen others try.  They may say they will “look into it” but they do not take the claim seriously.

However, I cannot and will not allow my abuser to have the power to make me change my life because of his sickness.  I will not change my email or my blog or my twitter account in an attempt to escape.  I have already escaped him and though he will try to bring me back, I am stronger than him.

What else then can be done?  I suggest the same as when experiencing physical or sexual abuse.  If you feel uncomfortable in any way when an abuser contacts you, call local law enforcement.  You may be able to obtain a protective (“restraining”) order depending on the laws in that county/state.   Unfortunately, that will do little to really prevent the abuser from finding you online.  But the report is important.  The record is important. But you will have a record of the abusers actions that could later be used against them in a criminal case if the harassment continues.  I recommend keeping any correspondence.  File it away in a folder so that you needn’t see it before you and be reminded again and again.

Most importantly, as I know I must do, reach out for help.  The Office of Women’s Health of the Health and Human Services Department offers a wealth of information by state on violence against women.  As does the National Center for Victims of Crime. Call a hotline like the National Domestic Violence Hotline at 800-799-SAFE (7233). Talk to the nearest women’s shelter.  Talk to your friends.  Talk to healthcare providers you trust – a doctor, a therapist.  Find a support group.  Learn about abuse and how to protect yourself.

The abuse I experienced may have happened years ago.  I may have left physically, but the effects remain.  Last night when I saw those messages pop up in my email, I panicked.  I felt the weight of those years of pain rush over me again.  I felt my safety ripped away as if I’d been literally grabbed and hit again.  But I will not change who I am in response.  I will not back down.  I will not hide and stop fighting for health as a human right to ensure that all who suffer the consequences of any type of abuse will find and have access to the help they need.   I will be strong.

I know my abuser is reading this right now.  And so I issue this warning:

You are a sick sick man.  If you contact me again, I will again involve law enforcement.  I will not let you continue to abuse me.


Askimo TV Interviews on Health Law and Policy

March 30, 2013

I was recently asked to give a series of expert interviews for Askimo on various subjects in health law and policy.  Askimo provides three main services:  it is a free library of 4-10 minute interviews with experts from around the globe, speaking on issues about which they are most knowledgeable. It could be a tax law or a medical disease — knowledge that is practical and can help in daily life.

“I like knowledge,” said David Butnaro, owner of Askimo, based in Tel Aviv, Israel, and soon to have an office in Maryland.  He describes Askimo as “a cross between Wikipedia and TED.”  Currently, the platform has close to 3,000 videos in its library in languages ranging from English to Hebrew to French; 60 percent are in English.

I really enjoyed this opportunity to translate complicated health law and policy subjects and introduce some new ideas like ePatients (I hope I did all ePatients justice) to the world.  Who knows how this knowledge will impact someone’s life.

Below are links to these interviews.

Note – I look forward to the Supreme Court’s decision in FTC v. Actavis after oral arguments this Monday, March 25, 2013, exploring the legality of Pay-For-Delay Settlements.

I also look forward to the Supreme Court’s Decision in Myriad Genetics which will discusses the patentability of the BRCA-1 and-2 genes and the processes to test for them as discussed in “Genetic Patenting” above.

Forming Nebular Health Tech in Austin

March 22, 2013

I want to repost this post from the new Nebular Health Tech group founded today in Austin, TX.  As you can tell from this blog, Health IT is incredibly important to me as a human rights advocate, an ePatient, a lawyer, and an activist.

Here is the story about forming Nebular Health Tech in Austin:

While other posts may be more innovation news oriented (guest posts welcome!), I wanted to start with a post about the formation of Nebular Health Tech – what this group is about, who we are, what we’ll do, how we can make a difference in health and healthcare.

What Nebular Health Tech is About:

Nebular Health Tech formed after an explosion of ideas and people coming together in Austin for the development of ideas and solutions around Health IT.  Starting in April 2011, I started cold calling and hitting the ground to meet as many people as I could interested in health in any way – payors, designers, developers, marketers, providers, patients, etc.  At the same time, I formed a Health 2.0 Austin chapter to gather us together to connect and foster innovation.  We started holding monthly meetings – our first presented by DocBookMD and Visible Health in the summer of 2011.  We had fun social gatherings around town.  In October 2011, we held a code-a-thon.  By then the listserv had grown to almost 400 people.

But Austin’s group needed a new direction – something truly unique to our community.  Austin needed a place where limits could be broken and new ideas could spark.  After a few months of hibernation and personal loss, I thought and others told me that we needed to gather again, we needed to reignite – it was too important not to.  And so the idea of Nebular Health Tech began.

As I started to think how we could rekindle, I thought first of a phoenix – rising anew from the ashes.  I then came across the Phoenix Cluster, a nebula having been dormant for possibly billions of years but now know to be one of the most active nebulae forming about 740 new stars per year.

And, I thought how perfect this image fit our community – the phoenix, star creation by joining forces, the wonders of space that have for all time sparked imaginations and led to some of the most important innovations.  We may feel nebulous, but we can come together to form something amazing and world changing. This is who we are and what we can be.

Who We Are:

Nebular Health Tech is everyone.  We are patients, providers, entrepreneurs, hospital administrators, policy makers, hackers & coders, pharmacists, insurance companies/payors, UI/UX’ers, reporters, social media experts, startups, engineers, quantified self’ers, VC’s & Angel Investors, caregivers, mental health providers, teachers, gamers, students, marketers and most importantly

All who want to break boundaries and change the world.

Nebular is founded on the values of innovation, inclusiveness, mutual support, and openness.  The group only works if we are all coming together to create momentum for change.

What We’ll Do:

Nebular will continue the traditions started in 2011 with monthly meetings, social gatherings, and events.  Our first event will be at projekt202 as we discuss how their Interaction designers collaborated with providers to change the principles of user-centered design.  Our next event will feature Regina Holliday and the film about her mural “73 Cents.”  And as these are planned, we’ll send out emails and use social media to invite everyone to join us. (follow us on Twitter @NebularHlthTech).

From there, who knows? We can organize events and meetings however we want.  Nebular welcomes ideas to gather and discuss health IT, for all of our healthcare innovators to make connections, to encourage making solutions for health and healthcare, and perhaps to work with community leaders to create an incubator/accelerator to carry those solutions forward.  We’ll support any ideas and initiatives to bolster the health IT community in Austin.  We can hold other events, partner and team up with other organizations, and just enjoy each other’s company.

How We Can Make a Difference:

There’s no telling what we can do once we get the momentum going.  Our collective talents, knowledge, passion, and personal experiences can help us create stars.  As nebulae, we and the impact we have on the world will be boundless.  I hope you will join us.

The molecules of your body are the same molecules that make up the nebulae that burn inside the stars themselves.  We are star stuff. - Victor Tenbaum

Affordable Mental Health Care in America

February 9, 2012

Access to and affordability of mental health services is dismal in this country.  In continuing the discussion about affordability of health care in America, below I discuss issues of access specifically in regards to mental health care in light of the Mental Health Parity Act (MHPA) and the Affordable Care Act (ACA).  While these laws have made some small progress to improving access to of mental health care in the private insurance realm, many still are unable to receive the treatment they need.  In truth, I do not think w will see a meaningful increase in access mental health care because even in light of these policy changes, it remains unaffordable.

Changes to Cost:

Before the MHPA of 2008, private insurance could set different coverage limits on mental health services.  The MHPA changed this, requiring insurers to cover mental health like medical/surgical benefits.  But it still allows an employer to restrict the extent and scope of this coverage.  I think most people assume this parity means mental health services that are covered are as extensive as medical/surgical coverage, but really it means that the copays, coinsurance, and deductibles, and lifetime & annual limits for services are the same.

By 2014, the Affordable Care Act prohibits insurance plans from imposing annual dollar limits on the amount of coverage an individual may receive – this would apply to both medical/surgical coverage and mental health coverage because of parity.  Before, an insurance plan could stop paying on your benefits after your total medical costs were over $500,000 that year, if that were the limit they chose.  This includes all medical, surgical and mental health benefits.  This is a problem if you have a serious mental illness and are hospitalized several times or need intensive inpatient treatment (which they may or may not cover) and you need prescriptions for your mental health or have comorbid/coexisting conditions like type 2 diabetes or cancer.  That limit could be reached fairly easily, leaving an individual to pay the rest of the expenses out of pocket.  But as of September 1st last year, they must cover at least up to $1.25 million.  Next year that will be raised to $2 million.  And by January 1, 2014 they cannot have any limits.  So no matter what care you need, medical, surgical, mental health, you will only pay your premium, copays, deductibles, and coinsurance amounts.

Expanding Services Covered:

The services covered under an insurance plan – i.e. which providers you can see, what diagnoses/illnesses are covered, how many visits they’ll pay for – still varies by insurance policy.  Each state has its own rules on what insurance plans must offer.  Thus, unless codified, insurance policies do not have to offer coverage for mental health services that they do not want to cover.  In Texas, the legislature has debated whether insurance plans must cover treatment for eating disorders.  Currently, insurers do not have to consider that a “serious mental illness” and thus do not have to offer coverage for an insured seeking treatment for that condition.  Thus, even if you have some mental health coverage, it may not treat the conditions for which you need help.

Under the ACA, individual and small group insurance plans must cover certain “essential health benefits” (EHBs).  These are meant to be a comprehensive set of services and include “mental health and substance use disorder services, including behavioural health treatment” coverage.  However, EHBs are not yet defined and there is a lot of controversy as the rules and regulations are developed. As of now, the Department of Health and Human Services is primarily leaving it up to the states to decide what counts as an EHB.  So while mental health must be covered in small group or individual plans, at what level or which conditions depends on where you live.  However, mental health coverage for these plans should be similar to large group insurance plans which will be used as benchmarks.

Regardless, even if insurance does cover mental health illnesses that a particular individual person suffers from, many mental health providers will not accept private health insurance, rendering coverage fairly meaningless.  Certainly, insurers have to have to be contracted with therapists in your area. They have to provide “network adequacy” meaning that you should be able to find a mental health provider that will take your insurance and they can give you a list of those providers.  But because few providers take insurance, the ones that will take your insurance may be backed up, their schedules full.  Now, an insured can request a “special exception” or “in-network exception,” but this is a bit complicated and frustrating at times.

Removing Pre-existing Condition Exclusions:

Currently, insurers can refuse coverage for pre-existing conditions, including mental health illness.  They can deny coverage if the condition was documented or if a reasonable person would have known they had an illness.  This created an interesting situation for individuals filling out intake forms for their health care providers or what health care providers might put in their notes in terms of what documentation exists to show you knew you had a pre-existing condition.

Many group plans do not have pre-existing condition exclusions (partly because the risk is spread out among a larger population).  But when someone loses a job or leaves for a smaller employer or self-employment, they may lose that coverage (if they can afford it, and the employer keeps providing insurance, the former employee can stay on the insurance plan by paying the premium out of pocket, which gives them 18 more months of coverage).

When losing health insurance, the insurance company must send you a certificate of creditable coverage.  Creditable coverage generally means that you were insured within the previous 60 days.  With the certificate, you may avoid limits on pre-existing conditions when you apply for insurance again.  But creditable coverage only lasts those 60 days.  So if you applied for insurance on day 61, insurance companies can exclude your pre-existing conditions.

As part of the ACA, by 2014 an insurance plan cannot consider refuse to cover pre-existing conditions including mental health conditions.  Already, under the ACA, insurers cannot limit or deny coverage for pre-existing conditions for children.  This will be expanded to adults in the next few years.  Additionally, in 2014, insurance plans cannot charge higher premiums, put lifetime limits on coverage for key benefits, or deny coverage because of a mistake on an application.

Until 2014, individuals with pre-existing conditions who cannot afford insurance or whose employer does not provide insurance can get coverage through their state’s Pre-Existing Condition Insurance Plan (PCIP).  Some states also have high risk pools, but PCIP is much more affordable.  The drawback being that you have to have no insurance coverage at all for 6 months prior to applying for PCIP and for high risk pools as well.  PCIP will only last until 2014 when insurance plans can no longer deny or limit coverage for pre-existing exclusions.

Do current policies increase access to mental health care? 

Theoretically, considering mental health parity and the elimination of annual dollar limits on coverage, coverage for EHPs, and insurance plans no longer restricting coverage of pre-existing conditions, yes.  But this won’t happen for two more years really.  And ACA does not change what exactly insurance plans will cover – other than the obscure EHBs.  Nor does the ACA require mental health care providers to accept health insurance, so finding a therapist who treats your condition (if it is covered) is contracted with your insurer can be a huge barrier to access.  The ACA does not put limits on premiums, co-pays, co-insurance, or deductibles.  Premium increases (the amount they change from year to year) must be reviewed and are limited.  But premiums can still be really high.  More “affordable” plans, mean higher deductibles, co-pays, and co-insurance.  And these monetary barriers do not just effect your ability to see a medical or mental health care provider but also your ability to afford medications as prescribed by those providers.  In addition, we must consider whether there are even enough medical or mental health care providers to even address and treat mental health conditions.  So even if the ACA provides slightly better access, that access can be limited if there aren’t enough providers to help everyone.

Though policy changes are making small positive changes in addressing mental health care in America, is there really increased access to mental health care? No.

Help the Homeless

January 6, 2012

We are all one step away from  homelessness.  The security we have in our jobs, homes, and family can disappear in the blink of an eye.  Homelessness does not just happen to those who made “bad” choices in their lives, people on drugs or convicts.  Homelessness can happen to those who lose their jobs or affected by natural disasters.  Homelessness affects those with mental illness who cannot find the services they need.  Homelessness affects those leaving abusive situations.  Homelessness affects our children who are neglected or rejected because of their sexual orientation.  Homelessness affects those who served our country and fought for our freedoms.

The homeless are our neighbors, our peers, our friends forgotten.  The homeless are us. 

While no count of the homeless is quite accurate:

  • There are 730,000 people experiencing homelessness on any given night in the United States.[1]
  • Of that number, 238,110 are people in families, and
  • 404,957 are individuals.
  • 17 percent of the homeless population is considered chronically homeless and
  • 12 percent of the homeless population – 67,000 – are veterans.[2]
  • 3 million people, 1.3 million of them children, are likely to experience homelessness in a given year.[3]

What might keep someone homeless?  It’s not a lack of will to pull oneself out of such a situation.  Who among us would choose to remain homeless?  Such circumstances are embarrassing and degrading.  We must understand why our neighbors are homeless in order to help them.  Many factors are involved – finding affordable housing, finding a job, physical ailments or mental health issues and no services to address them.  According to the US Department of Housing and Urban Development (HUD) a family with one full-time worker earning minimum wage cannot afford rent for a 2-bedroom home anywhere in the US.  In other words, a single mom or dad with 2 kids cannot afford a home even if they are working full-time.  Imagine if those kids needed medical attention or they were laid off?  What then?

Why discuss homelessness on a health blog, because homelessness and health or inextricably linked.  About half of the homeless have suffer from mental health issues – many are schizophrenic.  Almost half of the homeless have addiction issues.  Yet they do not have access to treatment for these issues.  Those who are homeless often cannot seek treatment for physical illnesses like HIV/AIDS or diabetes (type 1 or 2) or afford medications to treat them. And even if they were to get the medication, where would they keep it?  How could they refrigerate their insulin or safely keep the needles to inject it with? And if they cannot help themselves, they often end up in emergency rooms.  According to a report in the New England Journal of Medicine, homeless people spent an average of four days longer per hospital visit than comparable non-homeless people. This extra cost, approximately $2,414 per hospitalization, is attributable to homelessness.[4]  A study of hospital admissions of homeless people in Hawaii revealed that 1,751 adults were responsible for 564 hospitalizations and $4 million in admission costs. Their rate of psychiatric hospitalization was over 100 times higher than their non-homeless cohort. The researchers conducting the study estimate that the excess cost for treating these homeless individuals was $3.5 million or about $2,000 per person.[5]

How can we help our fellow men, women and children when they need us the most?  One way to do so is to participate in the HUD point-in-time counts.  At the end of January, communities canvass their cities to determine who is homeless in order to receive funds for services and programs to address needs and end homelessness including health services. 

On January 22, 2012 Austin Involved is helping out Ending Community Homelessness Coalition (ECHO) with their Point-In-Time Count in Travis County.  As part of the count, ECHO is providing (with the help of Austin Involved) socks and travel sized toiletries.  And I plan to bring along some candy – which is ever so meaningful to the hungry and those on drugs (do not judge them for being on drugs, they still deserve to eat) or who may be in detox.  Those wanting to join us please RSVP at  Those wanting to help the homeless in their communities – contact one of your local homeless service organizations.

Other ways to help:

  • Donate to local clothing closets those that will give your donations away for free (remember when you have nothing, even a $1 at Goodwill can be too expensive) like – Lisa’s Hope Chest here in Austin.  Donate:
    • Household goods
    • Books
    • Stuffed Animals
    • Computers
    • Toiletries
    • Clothing – not just a t-shirt but socks and underwear too
    • Old phones (these can help the abused call 911 for help)
    • Carry candy in your car or purse and hand it out to those panhandling on the street.  Food helps.
    • Contribute to food drives and pantries
    • Don’t judge – Listen to the stories of those who need our help, you never know who you’ll meet or what you’ll learn.  Smile and wish them a good day.  Let them know they are loved.

“Souls which have fallen to the bottom of all possible misfortune, unhappy men lost in the lowest of those limbos at which no one any longer looks, the reproved of the law, feel the whole weight of this human society, so formidable for him who is without, so frightful for him who is beneath, resting upon their heads” – Victor Hugo, Les Miserables.

Let us recognize and help these souls.  Let us allay their fright.  Let us relieve our neighbors from the burdens that would keep them homeless and in despair.


For more information visit:

The Stress of Life Changes

September 3, 2011

We must always change, renew, rejuvenate ourselves; otherwise we harden – Johann Wolfgang von Goethe

Change is, of course, a constant.  In my life, I’ve just changed apartments and jobs (which is why I’ve been absent).  Two very stressful life changing events, particularly in the hottest Austin summer.  Though not the most stressful, these changes are certainly notable in a year of many personal changes.

Thomas Holmes & Richard Rahe examined the medical records of over 5,000 medical patients as a way to determine whether stressful events might cause illnesses and created the Social Readjustment Rating Scale (SRRS).  The Scale lists 43 life events, each assigned a value in “life changing units” chosen to reflect the relative amount of stress the event causes.  By adding up the life changing units for each event experienced in the past year one can predict how stress affects health.

Life event

Life change units

Death of a spouse 100
Divorce 73
Marital separation 65
Imprisonment 63
Death of a close family member 63
Personal injury or illness 53
Marriage 50
Dismissal from work 47
Marital reconciliation 45
Retirement 45
Change in health of family member 44
Pregnancy 40
Sexual difficulties 39
Gain a new family member 39
Business readjustment 39
Change in financial state 38
Death of a close friend 37
Change to different line of work 36
Change in frequency of arguments 35
Major mortgage 32
Foreclosure of mortgage or loan 30
Change in responsibilities at work 29
Child leaving home 29
Trouble with in-laws 29
Outstanding personal achievement 28
Spouse starts or stops work 26
Begin or end school 26
Change in living conditions 25
Revision of personal habits 24
Trouble with boss 23
Change in working hours or conditions 20
Change in residence 20
Change in schools 20
Change in recreation 19
Change in church activities 19
Change in social activities 18
Minor mortgage or loan 17
Change in sleeping habits 16
Change in number of family reunions 15
Change in eating habits 15
Vacation 13
Christmas 12
Minor violation of law 11

A total score of 300 or more correlates with an 80% of becoming ill in the near future.  A score between 151 and 299 correlates with a 50% chance of becoming ill in the near future.  And a score of 150 or below correlates with a 30% chance of becoming ill in the near future.

Stress of course can be good and bad.  Even the happiest of events – marriage, the birth of a child, outstanding personal achievements, vacations and holidays – are all accompanied by stress.  And this stress has a serious effect on our health.

The body responds to stress by releasing cathecholamines (including epinephrine/adrenaline and norepinephrine/noradrenaline) in the sympathetic nervous system and stress hormones in the hypothalamic-pituitary-adrenal axis like glucocorticoids (including cortisol).  These changes can make blood pressure, heart rate, and blood sugar levels go up.

Stress can lead to health problems including:

  • Physical pain, like headaches
  • Mental health disorders, like depression and anxiety
  • Memory impairment
  • Sleep problems
  • Digestive problems
  • Obesity
  • Heart disease
  • High blood pressure
  • Acne, eczema and other skin problems
  • Changes to the immune system

Interestingly, stress affects people of varying socioeconomic statuses differently. As explained by a brief by the Robert Wood Johnson Foundation, How Social Factors Shape Health: The Role of Health -

People with greater socioeconomic advantage—with more education, higher incomes and/or greater wealth, for example—may be more likely to experience stress in ways that actually have beneficial effects on their health; this can occur when their own sense of being able to successfully meet and resolve the challenges they encounter is reinforced. In contrast, those with less education and lower incomes typically face more frequent and numerous stressors in many aspects of their lives, while at the same time having more limited social and material resources for coping.

So what can one do to manage stress?  Unfortunately, you cannot always predict stressful life events or stop them from happening.  So the best thing to do, take care of yourself.  Eating healthy, getting plenty of rest and exercising regularly can help ease stress and help you be able to deal with stressors as they arise.  Practicing relaxation techniques like mediation and prayer, learning deep breathing exercises, and talking to others like a friend or counselor can also help.  Internalizing the stress, not talking about it or releasing it via exercise or talking can only increase your chances that it will compromise your health.

This year has brought me many changes both good and bad.  My score on the SRRS is pretty darn high; meaning I need to take care of myself.  After all this moving a pedicure was needed for relaxation.  And Reading (I recommend Cutting for Stone) and going to bed early this week have kept my strength up and my mind sane.  Even with this stressful event behind me, I know many stressors are ahead.

I hope if you are finding your life changing for the better or worse, you will take care of yourself.

All changes, even the most longed for, have their melancholy; for what we leave behind us is a part of ourselves; we must die to one life before we can enter another – Anatole France

The Downside of Up – It may not always be good to “smile tho’ your heart is aching”

June 11, 2011

Smile tho’ your heart is aching,
Smile even tho’ it’s breaking,
When there are clouds in the sky
You’ll get by,

If you smile
thro’ your fear and sorrow,
Smile and maybe tomorrow,
You’ll see the sun come shin-ing thro’ for you…

(Music by Charles “Charlie” Chaplin — Lyrics by John Turner and Geoffrey Parsons)

“Smile though your heart is aching” is a lovely song.  But smiling may not be the best.  There is an downside to up, as well as an upside to down.  Happiness may make people worse off in some ways, pessimism can have it’s pluses, negative thinking can be positive and positive thinking can be negative.  Even sadness and apathy marking a state of depression can be beneficial.

I already wrote about studies that show the happiest places on earth having the highest suicide rates.  Countries including Denmark and Sweden, often ranked high on measures of happiness and life satisfaction, have relatively high suicide rates.  Perhaps, researchers speculate, this is because being around happy people make an unhappy person feel worse.  The point is, being surrounded by happy people or trying to force yourself to be happy won’t prevent suicide.  Suicide is serious and much more pervasive than we like to acknowledge.

Positivity, happiness, optimism and the like have benefits – maybe.  All the studies done on the links between health, wealth, longevity and positive thinking/optimism do not tell us which causes which.  Maybe being healthier makes you more positive instead of being positivity increasing health.

People who strive for happiness may end up worse off than when they started.  There are too many self help/motivational books to count that encourage us to  strive for happiness, give us tools to find happiness, and tell us our life will be infinitely better when we reach our goal.  The tools provided might be helpful but the goal to be happy is not.  For instance, learning to be more mindful of the good things in life can be beneficial.  But when there’s an expectation that happiness will result from these endeavors, you may just end up disappointed.  When people don’t end up as happy as they’d expected, their feeling of failure can make them feel even worse.

Happiness may have other down sides.  A study of children followed from the 1920′s to old age found that those who died younger were rated as highly cheerful.   Then there are the studies that show people who feel extreme amounts of happiness  may not think as creatively and may take more risks like driving to fast, substance abuse, and other detrimental behaviours.  Additionally, those who are extremely happy may not be as successful as others financially and educationally.

Being too happy prohibits us to feel the appropriate emotions.  Our society promotes happiness above all else.  We don’t approve of other emotions like sadness, fear, or anger.   Those are emotions to be dealt with in private.  We are told to “put on a happy face” and “smile though our heart is aching”  but this means we do not allow ourselves to express how we really feel.  Carl Rogers might say that smiling in the face of our true emotions simply masks who we really are.  Removing these masks will allow us to live more fully.  Negative emotions are just as important as positive emotions and should not be ignored or hidden.

Being positive can “keep us from seeing reality with the necessary clarity,” according to Martin Seligman who established the field of positive psychology.  If your sunny outlook is through rose coloured glasses, you can’t see the whole truth and therefore may not be prepared for what’s next.

Those who fret over upcoming stressors like big tests or job interviews may overestimate their likelihood of failure.  But it’s this pessimism that allows them to be better prepared.  Furthermore, these individuals may may use their low expectations to cope with their anxiety so that it does not become debilitating. And these low expectations may help them negotiate risky situations.  When forced to “cheer up” pessimists perform worse on tasks.

Pessimists may even be less prone to depression than optimists when faced with a negative life event like the death of a friend.  Perhaps because pessimists had spent more time bracing themselves mentally for the future difficult possibilities. (see Isaacowitz,Derek M, with M.E.P. Seligman. “Is Pessimistic Explanatory Style a Risk Factor for Depressive Mood among Community-Dwelling Older Adults?.” Behaviour Research and Therapy 39. (2001): 255-272.)

Conversely to popular beliefs, positive affirmations can have a negative effect on those with low-self esteem.  Asking those with low-self esteem to repeat phrases over and over like “I am good enough” or “I am smart enough” or “I am a beautiful person inside and out” leave them worse off.  These statements may only remind them of how often they have fallen short of their life goals.

Being optimistic may also not be all it’s cracked up to be.  Optimism may be irrational.  Most people are more optimistic than realistic – believing (perhaps like teenagers who think they’re invincible) that they won’t be like their peers and face hardships like being diagnosed with cancer or getting a divorce and that things will be better for them – they’ll live longer and their children will be more gifted and talented.  Optimism is resilient and persists throughout our life but it can lead to disastrous miscalculations.  Optimism can hinder our ability to focus on how we can avoid defeat or heartache thus proving ineffective as a protective mechanism to learn from our experiences.

Another study finds that visualizing success may be counterproductive.  By imagining that we’ve achieved a goal, our brains stop trying.  Instead of working harder to reach our goals, by visualizing success we trigger a relaxation response that mimics how we would feel if we actually reach the goal.  In other words, our brains start to get comfy and slack off.  In the study, participants told to visualize attaining goals throughout the course of a week ended up attaining fewer goals than their peers and were found to be less energetic.  Instead, the researchers suggest we shouldn’t visualize success, we should visualize the obstacles before us and the setbacks we might face to prepare us for what’s next and help us reach our goals

Finally, depression may have positive side-effects.  A recent study found that depressed individuals perform better than their non-depressed peers in decision making tasks.  In the study, participants played a computer game in which they could earn money by hiring an applicant in a simulated job search.  The game assigned each applicant a monetary value and presented applicants one at a time in random order.  The participants had to decide when to stop and select the current applicant.  Turns out, healthy participants searched through few candidates while depressed participants searched more thoroughly and made choices that resulted in higher payoffs.  Thus, depression may actually promote analytical reasoning and persistence.

To be fair, happiness, positive thinking, and optimism have their benefits.  But maybe it isn’t always the best to -

You’ve got to accentuate the positive
Eliminate the negative
And latch on to the affirmative

(By Johnny Mercer and Harold Arlen)

Because there is a downside to up.

The Cruelty of Restraints

May 29, 2011

All persons with a mental illness… shall be treated with humanity and respect for the inherent dignity of the human person. – UN Resolution 46/119[1]

Restraints (here to also incorporate seclusion) are CRUEL.

I’m not talking about restraints like handcuffs used to apprehend a criminal or seatbelt restraints to keep you safe in a car accident.  Here, I mean to discuss the restraints many hospitals, nursing homes and other institutions still use on the mentally ill, disabled, and elderly.

Restraints are archaic, do not work, are not safe for patients or staff, and psychologically damage patients – stripping them of all dignity and the right to be involved in their own treatment while retraumatizing and punishing many.  Restraints are supposed to be used in emergencies to protect the person restrained or those around them.  However, even if used “correctly” and with good intention, the use of restraints is still cruel and a violation of human rights.

Physical (or “protective”) restraints are defined by the Food and Drug Administration as:

device[s], including but not limited to a wristlet, anklet, vest, mitt, straight jacket, body/limb holder, or other type of strap that is intended for medical purposes and that limits the patient’s movements to the extent necessary for treatment, examination, or protection of the patient or others.” [2]

They can include leg and arm restraints, hand mitts, lap cushions and lap trays that cannot be removed, waist/belt restraints, pelvic restraints, and vest/chest/jacket restraints among others.

The use of restraints is archaic – harkening back to times when people did not have any idea how to treat the mentally ill.  Used in asylums and on mentally ill treated like criminals, restraints were thought of as treatment to subdue those thought to be out of control.  In other countries, these out-dated notions remain, restraining those thought to be “criminals, crazy and dangerously aggressive people.”[3] In some places shackles and stocks are still used.

Dr. Philippe Pinel at the Salpêtrière, 1795 by Robert Fleury. Pinel ordering the removal of chains from patients at the Paris Asylum for insane women.

In 1797, Philippe Pinel, “physician of the infirmeries” at Bicêtre Hospital in France (then an asylum) and Governor Jean-Baptiste Pussin, freed the mentally ill (then regarded as insane) from strait jackets (though unfortunately still keeping them in iron shackles).  Even they were concerned with a more compassionate approach to treating those with mental illness, knowing that restraint was inhumane. How can it be that after centuries of knowing that restraints are not humane, we continue to use them?

Today, restraints are used for the elderly and disabled under the justification that they will prevent injuries to persons who are at risk of accidental falls.  Restraints are used for mentally ill and the disabled to “protect” and pacify patients.  In this context, physical restraints would theoretically be used to allow a doctor to treat an individual uncooperative with treatment measures deemed necessary.  In truth, they are used more as a means to control patients when staff are ill-equipped (because of lack of mental health training, staff shortages, or other reasons) to work with patients in severe distress.

Commonly accepted practice hold that restraints should not be used as the first line of intervention.[4]  According to the Department of Justice (DOJ), “standards dictate that restraints be employed only in the face of imminent risk of harm, when less restrictive interventions have proven unsuccessful and never as a punishment.”[5]  Yet patients are often restrained for trivial reasons such as an elderly person refusing to move to another dining table. [6]  Many nurses don’t know how to recognize when to properly use restraints such as for a potentially violent situation.[7]  They even don’t know that there are alternatives to restraints or that restraints can kill.[8]

Laws exist to protect individuals from restraints.  The Nursing Home Reform Act specifically states the following requirements for those in institutions:

(A) Specified rights: A skilled nursing facility must protect and promote the rights of each resident, including each of the following rights: …

(ii) Free from restraints The right to be free from physical or mental abuse, corporal punishment, involuntary seclusion, and any physical or chemical restraints imposed for purposes of discipline or convenience and not required to treat the resident’s medical symptoms. Restraints may only be imposed—

(I) to ensure the physical safety of the resident or other residents, and

(II) only upon the written order of a physician that specifies the duration and circumstances under which the restraints are to be used (except in emergency circumstances specified by the Secretary until such an order could reasonably be obtained). [9]

Nursing homes accepting Medicare or Medicaid payments must care for residents “in such a manner and in such an environment as will promote maintenance or enhancement of the quality of life of each resident.”[10]  Yet, in applying restraints, residents’ feel socially isolated, fearful, demoralized, humiliated, angry, uncomfortable, and confused – feelings that remain months or years after restraint removal.[11]

Courts have found that institutionalized persons have a legal right to “freedom from bodily restraint”[12]  The American Medical Association likewise states that “All individuals have a fundamental right to be free from unreasonable bodily restraint.”[13]  The AMA emphasizes the need for informed consent and restraints should not be punitive or used for convenience or used because of inadequate staffing.  Still restraints are used, and they are used liberally and inappropriately to certain cruelty.

[R]estraints – with their inherent physical force, chemical or physical bodily immobilization and isolation – do not alleviate human suffering. They do not change behavior. And they do not help people with serious mental illness better manage the thoughts and emotions that can trigger behaviors that can injure them or others. [R]estraints are safety measures of last resort. They can serve to retraumatize people who already have had far too much trauma in their lives. – Charles Curie, Administrator of Substance Abuse and Mental Health Services Administration [14]

Restraints do not keep people safe.[15]  In fact, each year approximately 150 deaths occur nationally due to restraints.[16]  Beyond deaths, restraints can cause pressure sores, higher rates of infections, higher rates of falls, contractures, incontinence, bone demineralization, and increase aggression in both patients and staff among other effects.[17]  Restraints do not protect the elderly from falls or fall-related injuries.[18]  Staff are also hurt by restraints with studies showing that for every 100 mental health aides, 26 injuries were reported.[19]  Not to forget that restraining patients has a psychological impact on nurses.[20]  Thus, Restraints do not ensure physical safety, and there is no reason to ever use them for as it is a violation of legal rights.

Abuse has widely been documented about the use of restraints.  In 1998, the Hartford Courant published a series of investigations on the use of restraints, confirming 142 deaths during or shortly after restraint or seclusion in mental health or mental retardation facilities (noting that many deaths may not have been reported).[21]  They found that the aides who execute most restraints were the least trained and lowest paid in their field.[22]  They also found that because of poor oversight and legal recourse, few were punished for their misuse of restraints.[23]

Following this report, the National Alliance on Mental Illness (NAMI) started tracking reports of restraints and seclusion abuse, producing a report of 58 such incidents in only 2 years including the following disturbing incidents:

  • A Man asking for something to help him sleep and was placed in seclusion with no bathroom, left to defecate in his clothing
  • A Man admitted to psych ward involuntarily through ER after calling 911 for help was given antipsychotic drugs despite lack of consent and denied sleep medication even thought it was prescribed. He became agitated and hit an exit sign at which point staff told him that if he would go into seclusion room he would not be restrained. He cooperated but was still put into restraints in seclusion for 12-14 hours; during which time his charts showed he was calm and cooperative
  • A 12 year old boy died at a wilderness camp when placed face down in a physical restraint.
  • A 9 year old girl was left in a “time-out” room for three hours where she screamed, when the girl did not quiet down she was then placed in a therapeutic hold, and then given four shots of a sedative.  The parents had no idea.
  • A 44 year old professional woman sought voluntary treatment for bipolar disorder and was placed in 4 point restraints
  • A man was kept in seclusion and sometimes in restraints for 10 days, because staff said that he “needed to sleep” instead of pacing at night and that he was not acting “appropriately.”
  • A 28 year old woman voluntarily committed for treatment of conditions related to child abuse including rape was put in restraints with padlocks.
  • A woman was given medications for 3 days until she was found “semi-comatose on the floor.” They placed her in restraints and stopped all meds and she woke up 3 days later unable to talk. She continued in the hospital for 3 weeks without counseling or rehabilitation.
  • A 9 year old boy died after two hospital workers pinned him to the floor during a violent struggle.
  • A 16 year old girl died while in restraints from a heart condition.

Most of those reported were in hospitals, residential facilities, or mental health institutions.  These likewise happen to the elderly as evidenced by several court cases.

In Saunders v. Beverly Enterprises, a 56-year-old terminal cancer patient, a known smoker, was admitted to the defendant’s nursing home with orders for bed rest and restraint as needed.[24]  He was restrained 24 hours a day.[25]  He later obtained a lighter and tried to “burn himself free from the restraints, setting himself on fire.”[26]  Two weeks later, the hospitalized man died from second and third degree burns to his torso and neck.[27]

An 84-year-old resident who had been restrained in her bed with a vest-type restraint was found hanging from the side of her bed strangled.[28]

Then there is the 2008 report by the DOJ on the conditions in Texas’s State Schools for the Developmentally Disabled finding a failure to provide freedom from unnecessary or inappropriate restraints.[29]  From January through September 2008, a total of 10,143 restraints were applied to 751 Facility residents.[30]  The year before on resident’s shin bone was broken while forced into restraint after the resident did not answer what he wanted to eat and became agitated when staff touched him.[31]  That same year a teenage resident of one Facility died while being held in six-point restraints.[32]

These examples are a few of the many sad tales of restraint abuse.  Yet still these restraints are used frequently upon our most vulnerable – mentally ill, elderly, and disabled – those most in need of compassion and help.  In 2008, a 26 year-old woman was placed in restraints for asking to discuss with her doctor the need to take a certain medication.  The doctor never discussed the matter with the patient and she was put in 4-point restraints with an NG tube forced down her esophagus.  She was left in this state for hours while nurses laughed at her in the hallway.

Regrettably, those who are restrained are seldom listened to.  Their experiences are ignored even when these restraints are used “appropriately” (restraints are never appropriate but as deemed acceptable under today’s standards).  Few studies have addressed how it feels for a person to be restrained.  I recently came across an article by Tania Strout – Perspectives on the experience of being physically restrained: An integrative review of the qualitative literature.  She found that restraints had a negative psychological impact, retraumatized those restrained, and were perceived as unethical.  Common themes in the restrainees’ perceptions arose, including:

  • Humiliation
  • Demoralization
  • Dehumization
  • Degradation
  • Embarrassment
  • Violation of personal integrity
  • Vulnerability
  • Imbalance of power with the restrained feeling powerless
  • Restraints used as a means of punishment and control
  • Retraumitization inducing flashbacks, nightmares, and anxiety related to prior abuse experiences
  • Increased distress even after the restraints were removed
  • Increased anxiety, fear, and anger, helplessness
  • Lack of concern and empathy[33]

She additionally found that there were perceptions of

  • Lack of communication prior to restraint
  • Being for refusing treatment, following staff directions, or loss of control
  • That many were just trying to defend themselves[34]

How sad it is to hear these accounts by those restrained – particularly when alternatives exist.

If worried about falls, institutions can work to identify each individual’s risk factors for falling and target their interventions accordingly such as addressing medication side effects, observing residents, facilitating safe mobility and transfer, rehabilitative programs, etc.  Institutions can implement exercise programs to improve strength and balance.

For others with mental illness or disability, institutions should focus on communication between staff and patients.  This alone could abate many circumstances which may escalate because of misunderstanding and leave a person feeling defensive and scared. As with those in nursing homes, mentally ill or disabled should have more individualized treatment assessing and recognizing triggers that may make someone more agitated, being aware of early warning signs and symptoms, implementing crisis plans and post crisis plans. Proper education for staff including doctors, nurses, and assistants in all areas of care from emergency rooms to residential treatment centers should focus on helping providers understand mental disorders and disabilities.  Of course increased staffing would also help to ensure more individual attention on each person and eliminate the use of restraints as a means of control.

The Substance Abuse and Mental Health Administration states that eliminating the use of restraints requires:

  • An adequate number of qualified staff to meet patient treatment needs
  • Staff training, especially in verbal crisis management, including de-escalation techniques
  • Active treatment
  • Active risk assessment and risk-based treatment planning
  • An environment of care that promotes patient comfort, dignity, privacy, and personal choice
  • An emphasis on recovery for the mentally ill [35]

Most cannot imagine the horror of being restrained – the degradation, humiliation and pain of restraints.  These methods are as cruel as use of frontal lobotomies or electro-shock therapy.  They are torture for the patient and ultimately result in incredible physical and mental harm, harm which they are ironically meant to prevent.  Still they are used under ridiculous justifications.  Perhaps people do not understand the seriousness and think the call to end restraint use as an overreaction to a few bad examples.  As the author of One Flew Over the Cuckoo’s Nest (most remembered for its portrayal of a mental hospital/ward and damning the use of frontal lobotomies) stated regarding his book and play, “And to those who think it is fictionally exaggerated I only say try it first and see.” [36]

It is no exaggeration to state that restraints are cruel punishment for the most vulnerable.  If you think otherwise try it first and see.


See also:

GAO reports,

SAMHSA website on Seclusion and Restraint

Mental Health America’s Position Statement 24: Seclusion and Restraints

Child Welfare League of America

The World Health Organization Q&A: How can the human rights of people with mental disorders be promoted and protected?

One final note – Apologies for the dismal citations!

[1] United Nations General Assembly Resolution 46/119: The protection of persons with mental illness and the improvement of mental health care., accessed 5/29/11.

[2] 21 CFR Section 880.6760

[3] Minas, H. and Diatri, H., Pasung: Physical restraint and confinement of the mentally ill in the community. International Journal of Mental Health Systems (2008); 2: 8. accessed 5/29/11.

[4] Redl, F. & Wineman, D. (1952). Controls from Within: Techniques for the Treatment of The Aggressive Child. New York: The Free Press.;

[5] Report by the US Department of Justice regarding statewide CRIPA investigation of the Texas State Schools and Centers.  December 1, 2008., accessed 5/29/11.

[6] US Department of Health and Human Services, Substance Abuse and Mental Health Services Administration, Center for Mental Health Services, Summary Report, A National Call to Action: Eliminating the Use of Seclusion and Restraint, May 5, 2003., accessed on 5/29/11.

[7] Supra, note 6.

[8] Id.

[9] 42 USC 13951-3(c)(1)(A)(ii).

[10] Id. & 1396r(b)(1)(A) (Supp. IV 1998) [Medicaid]; 42 C.F.R. 483.15 (1999) (featuring slightly different language — “A facility must care for its residents in a manner and in an environment that promotes maintenance or enhancement of each resident’s quality of life.”)

[11] Kathy A. Gorski, Myths & Facts … About Physical Restraints and the Elderly, 25 Nursing 25 (1995).

[12] Savidge v. Fincannon, 836 F.2d 898, 906 (5th Cir. 1988) (finding that Youngberg v. Romeo, 457 U.S. 307 (1982) recognized that an institutionalized person “has a liberty interest in ‘personal security’ as well as a right to ‘freedom from bodily restraint.’”)

[13] American Medical Association Code of Medical Ethics, Opinion 8.17: Use of Restraints. Adopted June 1989., accessed on 5/29/11

[14] Conversation with Charles Curie, SAMHSA Administrator (2002). See also Curie, C. “SAMHSA’s Commitment to Eliminating the Use of Seclusion and Restraint.” Psychiatric Services 59(9):1139-1141 (2005)., accessed on 5/29/11.

[15] Braun, J. and Capezuti, E., Article: The Legal and medical aspects of physical restraints and bed siderails and their relationship to falls and fall-related injuries in nursing homes.  4 DePaul J. Health Care L. 1 (Fall, 2000).  (noting that no clinical study demonstrates that any intervention, including restraints, unequivocally prevents falls or fall-related injuries, that “one-half of all falls occur among restrained [residents]” and “serious injury rates are higher in facilities that use restraints”).

[16] Supra, note 6.

[17] Perspectives on the experience of being physically restrained: An integrative review of the qualitative literature. 19 International Journal of Mental Health Nursing 416-427 (2010).; Braun, J. and Capezuti, E., Article: The Legal and medical aspects of physical restraints and bed siderails and their relationship to falls and fall-related injuries in nursing homes.  4 DePaul J. Health Care L. 1 (Fall 2000).

[18] Perspectives on the experience of being physically restrained: An integrative review of the qualitative literature. 19 International Journal of Mental Health Nursing 416-427 (2010).

[19] Supra, note 6.

[20] Supra, note 18.

[21] Weiss, E. et. Al. Hundreds of the nation’s most vulnerable have been killed by the system intended to care for them.  Series: Deadly Restraint, A five-part series.  Hartford Courant A. 1, October 11, 1998.

[22] Id.

[23] Id.

[24] Saunders v. Beverly Enters., No. 89C-10930 (Marion Cty. Ct. Or. filed Mar. 18, 1991).

[25] Id.

[26] Id.

[27] Id.

[28] Green, W. & Pollack, E., Nursing Home is Liable in Restraint Case, Wall St. J., Mar. 26, 1990, at B5.

[29] Supra, note 5.

[30] Id.

[31] Id.

[32] Id.

[33] Supra, note 18.

[34] Id.

[35] Supra, note 6.

[36] Kesey, K. letter to New York Times, January 7, 1964., accessed on 5/29/11.

How Managed Care Caused Mental Health Care Crisis

May 25, 2011

Please read this post on entitled How Managed Care Caused Mental Health Care Crisis.

Here are a few points the author, Dr. Northrop makes:

[M]ental health benefits are now commonly “managed,” such that patients may be restricted to doctors in the insurance company’s network, and doctors who want to be in the network must accept drastically-reduced fees.  Anti-trust laws prohibit health care providers in private practice from organizing to negotiate more equitable fees, so the drastically lower rates are “take it or leave it.”…

…A psychologist working with managed care today receives a total fee about equal to what [the author] charged in 1987.  Adjusted for inflation, per session fees have declined 47% over that period of time….

…Mental health has proved especially vulnerable to the ravages of managed care because its patients tend not to be assertive about their right to treatment and because the subjective nature of emotional distress makes it easier to deny or restrict, by way of pre-approvals and treatment reviews, than many medical conditions whose symptoms can be documented with blood tests or x-rays….

…Prospective patients have more trouble finding therapists with time to see them or who will accept fees that barely cover taxes and operating costs.

I whole heartedly agree with this post by Dr. Northrop.  Unfortunately, our current system is set up to deny mental health treatment.  Those most in need have a hard time finding providers and often can’t afford them – even if they have insurance. Many mental health providers have left the managed care system (and rightly so).  The administrative burden coupled with the low reimbursements provide a disincentive for providers to accept any insurance plan.  And as stated above, anti-trust laws don’t allow these providers to come together and demand higher reimbursement rates.

This only hurts the patients who can’t find help and end up in hospitals or dead.  Patients who are already suffering from serious illnesses have no where to go in a system like this.  A system that is likely to get worse under the new Accountable Care Organizations to be developed.

As a community we need to advocate for higher payments for these providers.  And for patients, we need to find ways to get them care.

If a patient has insurance but cannot find a provider on their plan that is accepting patients or treats their specific illness, there is the ability to ask the insurance company for a special exception (or in-network exception – this may have a different term depending on the insurance provider).  Insurance plans must include enough providers in their network to cover their insureds.  For instance, a plan must have a hospital in the network, oncologists, radiologists, etc. and they must contract with enough of them for all the people on the plan (this is called network adequacy).  If they do not have enough or a certain provider, they have to allow the insured to see a provider outside their network and pay reasonable billed charges (not just the charges they are willing to pay). Simply ask “I would like to request an in-network exception based on the fact that there are no contracted providers where I live who treat or are willing to accept patients with [mental illness]“

Of course, you still have to prove that the treatment is necessary and you may have to follow up with the insurance company to make sure they are giving the right reimbursement.  Be your own advocate as best you can, keep asking to talk to managers and supervisors about your coverage if you are told no at lower levels.  This is one little secret they don’t want you to know and don’t want you to use.

We cannot let conglomerate insurance companies (reporting their 3rd year of record profits) deny our right to mental health.


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