November 2014 Archives

"If doctors do no other good, they at least prepare their patients early for death, undermining little by little and cutting off their enjoyment of life."

These words from Montaigne are 350 years old, but sadly too often they describe the results of modern medicine, particularly when it is mindlessly applied applied in a needlessly heroic way to the end of life. 

I spend a lot of time going around to different places warning professionals and the public that over diagnosis, over testing, and over treatment are bad for our health.

Recently, I have been witnessing these dangers first hand. As mentioned in my last blog, I have a friend who has lung cancer- the good, slow growing kind. His doctors have been less kind than the cancer. They keep screwing up in ways that seem likely to kill my friend before his cancer does.

The basic problem is that modern medicine consistently violates the ancient advice of Hippocrates- "It is better to know the patient who has the disease than the disease the patient has".

My friend has a small army of very highly specialized doctors all treating lab results in one tiny medical domain while ignoring all the aggressive stuff the other specialists are doing. None of the doctors has a global picture of my friend's treatment and the specific risks and benefits that apply to each new test or treatment.

The result is dangerous medical chaos. Doctors love pictures and get paid a lot for ordering and reading them. Over the years, my friend has been subjected to countless and mostly unnecessary imaging studies with contrast dye that have compromised his kidneys. It seems likely that renal insufficiency will kill him before his lung cancer does. He is also no longer eligible for additional lung cancer treatments because his kidneys flunk protocol requirements. And along the way, he has also been prescribed several unnecessary medications that also hurt the kidneys. Everyone focused on the lung cancer; no one noticed the harm they were doing to the kidneys.

There have also been several close calls because he was prescribed multiple medicines by multiple doctors without coordination and due consideration of their interactions and synergistic harms.

The mistakes were all easily preventable if anyone were minding the store and paying attention to the patient, not the lab tests. In any common sense world, doctors would care about risks and harms and wouldn't always be rushing to order stupid and dangerous tests and treatments.

The recurring mistakes in my friend's care are the rule, not an exception. Medical error is now the third leading cause of death in the US- 440,000 deaths a year caused by hospital mistakes and who knows how many more from outpatient mistakes.

Hippocrates must be spinning in his grave. We have lost track of what should be the most important dictum in medicine, his "First Do No Harm." Too many doctors, too many tests, too many procedures, and no one keeping track. Its a prescription for disaster and the disasters keep happening.

The wise neurologist Nicholas Capozzoli of Annapolis Maryland has this advice for his elderly patients: "If you want to have a long, happy, and healthy life, try to do two things- one, don't fall; two, stay away from doctors."

Unfortunately, certain diseases- like cancer- force us to break rule 2. We need doctors and the powerful treatments they sometimes have to offer.

But we can't trust doctors and hospitals to get it right. I am getting in the habit of joining my friend at his visits to make sure the doctors and nurses don't screw up. You shouldn't need to bring along a doctor to protect you from your doctors.

The system is broken and the incentives are all wrong. And it is not likely to be corrected soon. Too much money is being made by powerful corporations and institutions that profit from the current lack of coordination and sensible regulation. Free market medicine that treats healthcare just like any other business commodity just doesn't work- because it puts profits before patients.

For now, the only protection is a well informed consumer. Read everything about your condition. Ask lots of questions about the rationale, risks, and benefits of every test and treatment. Expect clear and convincing answers. When in doubt, get second and third opinions.

Keep in mind that less is often more.

In my last blog, Fuller Torrey described the dramatic deterioration of our mental health non-system and the resulting torment for the 600,000 severely ill who are either homeless, in prison, or rotating between the two.

There will be general agreement with Dr. Torrey that all of us should feel deeply shamed by this and inspired to do something to reverse it. We can also probably agree that the most important single thing we can do for the severely ill is provide them with decent housing.

Consensus beyond this is more difficult to come by. Dr. Torrey emphasizes the need for easy access to adequate treatment, the value of medication, and the very occasional resort to court ordered treatment for those in imminent danger of otherwise winding up imprisoned or homeless.

The recovery movement comes at this from another perspective, which will be described by Gina Firman Nikkel, PhD, CEO of the Foundation For Excellence in Mental Health Care. I have asked her to indicate where there are differences, but also where she sees possibilities for joint advocacy and for complementary rather than competitive service delivery.

Dr. Nikkel writes:

"The recovery model is a large and inclusive tent with broad areas of common interest, but also many different views on specific points, conditioned by very intense differences in how the mental health system has been experienced. For example, a person who has had negative treatment results, or has been forcibly restrained, or has been treated with disrespect by mental health professionals will have a powerfully negative perspective on the imposition of coercive treatment. In contrast, the family member who has tried unsuccessfully to get their loved one to accept much needed treatment and has helplessly watched them be imprisoned or wandering the streets will view the use of coercion in a radically different way. Everyone, in their own way, wants what's best for people with mental health challenges but risks and benefits are interpreted through a personal lens.

There is wide agreement that whatever model we are using, it is crucial to provide the financial, housing, employment, education, and social supports necessary for an independent and successful life. We clearly don't have anything approaching enough of these. There also consensus that the use of alcohol and street drugs interferes with people getting on with their lives and staying out of jails, prisons and homelessness. For these problems, peer supports that parallel AA and NA are broadly seen as gaps that can be filled by people with 'lived experience.'

It is also hard for anyone to deny the role that trauma and adverse childhood events play as major factors that need far more attention and earlier intervention. This is especially so for children living in troubled families and those who experience 'adverse childhood events.' Again, no matter the model, whether medical or social, a trauma-informed system of care would go a long ways toward healing psychological, social and even physiological wounds.

We can also find great common ground among advocates on the need for much better medical care for people with severe mental health issues, especially since their life expectancy is about 20 years shorter than for the general population. Aside from providing access, it is important to train medical personnel about special medical problems drug complications (especially obesity), poor diet, heavy smoking, and lack of exercise. These are key issues that need more attention as integrated health systems are created and charged with improving the health of all populations.

There is a great divide in terms of whether services are best offered in traditional psychiatric or recovery settings, but there is still plenty of shared concern that services of any kind are not consistently or widely available. There are a number of community mental health systems that find a combination of the two types of programs complementary and not at all contradictory.

Recovery is the goal of whatever supports or treatments or interventions are available, especially if recovery is viewed as a life lived with friends, success in school, work and physical health. Many medically oriented leaders, like Dr. Stephen Marder of UCLA, have been saying this for some time.

Finally, whether spoken or not, there's probably a consensus that fighting with each other is largely a waste of resources and energy. It would be a step in the right direction to acknowledge that significant differences exist but that there is a great deal of common ground. I think there also would be agreement that the best research and science on short term and long term outcomes should become the standards by which many of the disagreements should be judged and resolved to the greatest extent possible."

I am grateful to Dr. Torrey and Dr. Nikkel. It seems clear to me that their common dedication to helping the severely ill far outweighs any specific areas of difference. The point is that one size does not fit all. As the Talmud puts it, "We don't see things as they are, we see things as we are."

My clinical and research experience and reading of the literature convince me that medication is essential for most people with severe and chronic symptoms. It is equally clear that medication is way overused in many people who don't need it. Anyone who inflexibly and ideologically believes that medication is all good or all bad is seeing only one part of the complex picture and is making recommendations that will sometimes be out of place and cause more harm than good.

The controversial question of coercive treatment also has to be understood in context. The drastic reduction in inpatient and outpatient services has made any psychiatric treatment, voluntary or coercive, very hard to get. It is now far harder to get into a hospital than out of one. Coercive treatment has become rare, usually brief, and provided as a means of avoiding the much greater, more degrading, and longer-term coercion that comes with imprisonment.

It made great sense 50 years ago to fight hard against the then common and often unjustified use of psychiatric coercion. But the real fight now is against the much more frequent and much more coercive imprisonment of the severely ill - ten times more of whom are currently in prisons than in hospitals.

The Psychiatric Times is leading what may become a very promising discussion on what can be done to fix our broken heath system. We need to collect the widest possible assortment of suggestions and opinions. Please contribute your ideas and experiences on their website.

For those suffering from severe mental illness, this is the worst of times.

The most dispiriting moments in my entire life have been spent visiting solitary confinement units in state and federal prisons. Many of the inmates have obvious psychiatric symptoms, talking to themselves, screaming and/or pacing agitatedly back and forth; some even smearing excrement all over the walls and on themselves. And walk the streets of any city and you will find multitudes of the mentally ill left homeless to fend as best they can for themselves.

Because of inadequate treatment and housing, the mentally ill are extremely vulnerable to arrest for avoidable nuisance crimes- it is as simple as stealing some food from a store, sleeping on a bench in a public park, or shouting back at voices in the middle of the night. Police have learned that it is a waste of their time to take the person to an emergency room- they will have to hang around for hours after which there is no bed available, no timely outpatient appointment, no housing solution. So their default position has become an arrest- turning someone who should be a patient into a prisoner.It doesn't have to be this way and isn't in other countries with a more developed social conscience and better preserved family units. The tools of effective treatment and decent housing are well known. We just don't provide them with anything approaching adequate funding. Beyond the shameful inhumanity, this is penny wise and pound foolish. Community treatment and housing are far cheaper than prisons.

Over his long career as researcher, clinician, and ardent advocate, E. Fuller Torrey MD has been the most persistent and most effective champion for those with severe mentally illness. If we don't understand the history of how we got into this shameful mess, we won't know how best to save the severely ill from their outrageous fate. Having lived this history, Dr. Torrey is in the best position to explain it for us. He writes:
 "Let's start with fifty years ago. In 1964, 'deinstitutionalization' was well underway with 12 percent of state hospital beds having been closed. There were still 255 public psychiatric beds per 100,000 population. Thorazine was widely available and the staffing of the hospitals had improved markedly since the severe shortages during World War II.

Thirteen states had already passed community mental health legislation and outpatient clinics were increasing rapidly.  Among the existing 1,400 clinics, individuals with psychotic disorders constituted 20 percent of the patients.  Mental health centers such as the Massachusetts Mental Health Center, Fort Logan in Colorado, and San Mateo in California were regarded as models, two years before the first federally funded CMHC would open.  Promising experiments in delivering psychiatric services were underway, such as the Louisville Homecare Project which demonstrated that many individuals with schizophrenia could be cared for at home by visiting public health nurses. Rehabilitation efforts were being led by the Fountain House clubhouse in New York and by programs such as the Fairweather Lodges in California. 

In 1964 almost nothing was being written about seriously mentally ill persons among the homeless or in jails and prisons; existing data suggest they constituted less than 5 percent of both. There had not been a single mass killing associated with a mentally ill person in 15 years, since Howard Unruh had killed 13 in Trenton, New Jersey in 1949.

Fast-forward half a century to 2014.  94% of state mental hospitals of the beds have since been closed, leaving only 11 beds per 100,000 population. A consensus of experts suggested that 50 beds per 100,000 population is the minimum needed. 
And psychiatric outpatient care for individuals with serious mental illness is in very short supply. The federally-funded CMHC program has come and gone, widely regarded as a failure because less than 5 percent of the patients treated had psychotic disorders. Some progress has been made in establishing best practices, such as the continuity of care under Assertive Community Treatment (ACT) teams and the importance of early treatment, but best practices are not widely available. The treatment system is vastly underfunded and not directed toward best practices.

Multiple studies find that approximately one-third of the homeless population have untreated serious mental illness. A 2010 report estimated there are 650,000 homeless persons in the U.S., suggesting that approximately 216,000 are seriously mentally ill. 
A 2014 study reported that 15 percent of state prisoners and 20 percent of jail inmates, which equals 356,000 individuals, are also seriously mentally ill. 

The total number of seriously mentally ill individuals who are homeless and incarcerated is thus about 572,000, which is almost the same as the number of state hospital beds that have been closed. 

 Studies in New York, Indiana and California suggest that individuals with severe mental illness, mostly untreated, are responsible for 10 percent of all homicides. And mass killings by untreated mentally ill individuals occur several times each year. It is thus a remarkable and saddening saga--fifty years of going backward in our treatment of individuals with serious mental illness. Future historians will marvel at it and wonder how we allowed this slide toward barbaric neglect and cruel incarceration. 

All of us who participated in mental illness treatment programs over the past half century must share the blame for this situation; indeed, we should all be ashamed. We can plead good intentions in our defense, but good intentions provide little comfort for those who have suffered because of our errors. 

Darold Treffert, one of the few American psychiatrists who have tried to reverse the downhill course of psychiatric services in the past half century, described it correctly:

"It is not 'freedom' to be wandering the streets, severely mentally ill, deteriorating and getting warmth from a steam grate or food from a garbage can; that's abandonment. And it is not 'liberty' to be in a padded jail cell instead of a hospital, hallucinating and delusional, without treatment because that is all the law will allow."

 Is there any possible way to get this train back on track? First, implementing Tim Murphy's Helping Families in Mental Health Crisis Act (H.R. 3717) would be a good start.  Second, Congress should abolish the IMD (Institution for the Treatment of Mental Disease) exclusion. In fact, I personally believe that the federal government should get out of the mental illness treatment business altogether. They have been in this business since the passage of the CMHC legislation in 1963 and it has been all downhill. Let's give the responsibility - and the federal money--back to the states and then hold the governors accountable for the results.  They cannot do worse than we are doing now. Third, there needs to be further modification of state involuntary treatment laws and increased use of assisted outpatient treatment (AOT) and conditional release so that the small number of seriously mentally ill individuals who need these kind of services can be treated before they end up homeless or incarcerated. These three steps alone would go a long ways toward improving the treatment system."

Thanks Dr. Torrey, for this and for all you are doing and have done to fight for decent treatment and housing for the severely ill. It must be terribly sad and frustrating to devote yourself so wholeheartedly to so righteous a cause and yet not be able to stem the tide of indifference, neglect, and foolish policy. We can all agree with most of Dr. Torrey's positions, but two have stirred considerable controversy, sometimes because they are inherently controversial, sometimes because he states them so categorically.

 The most contentious issues are the value of antipsychotic medication and the occasional necessity of enforced treatment. Dr. Torrey's research and clinical experience has convinced him (as has mine, me) that proper use of medication for acutely psychotic and for recently stabilized individuals is absolutely essential in resolving symptoms and reducing the appreciable risk of relapse. Dr. Torrey and I also believe that quite rarely the coercive risks of applying external constraints to ensure needed medication far outweigh the much greater coercive risks that come when untamed psychosis leads to prison and/or homelessness.

 Opposition to Dr. Torrey comes most heatedly from those who have had a personal experience of 'surviving' psychiatric illness despite what they believed to be a detrimental, coercive psychiatric treatment. Some in this camp categorically oppose all medication and all constraint- believing instead in the universal applicability of recovery models, empowerment, and peer support.

  The seemingly large chasm between these opposing views largely results from the fact that one size cannot possibly fit all. The most enthusiastic supporters of the recovery approach are the people for whom it was optimal and they are entirely right in believing it is the best approach for them. But that doesn't mean it is safe or optimal for others who have more acute, severe, endangering, pervasive, and impairing symptoms which puts them at risk for prison, homelessness, chronicity and a terrible outcome if treatment is not promptly offered.

 It is crucial to find a middle ground that will allow joint advocacy and caring for those most in need. This has been possible with Eleanor Longden of Hearing Voices http://m.huffpost.com/us/entry/4003317 and http://m.huffpost.com/us/entry/4038218 A future blog will hopefully find where there are points of agreement between Dr. Torrey and the Recovery Model. Indeed we should all feel ashamed of the current sorry state of affairs and work together to improve them.