The Emancipated Patient

  

On our last blog post pseudo-Kristen laid the groundwork for what I'm about to say. In a comment there she said:

"I want the same scenario as the cancer patient. I want to say, as someone who is presently competent to make decisions, that this form of intervention was not life saving for me, it was harmful to me personally and drove me further from care. I want to be able to opt out of all forced treatment in case of psychiatric emergency…"

Presently this isn't possible. Although psychiatric advance directives exist, the reaction I've gotten from both doctors and patients is that they are essentially useless. Doctors don't like them because they can lose the ability to give involuntary medications---leading to a patient taking up a hospital bed who can't be treated. Patients don't like them because in many states they can't be used to prevent civil commitment.

This got me thinking. What would happen if advance directives had teeth? What would be the outcome if certain patients, after a certain process, were essentially exempt from ever being subject to involuntary care?

There is an analogous process we can look to in juvenile law. (Forgive the comparison, I'm not implying that psychiatric patients should be or are lesser than adults although I'm sure sometimes it feels that way.)

In juvenile law, if someone can prove that he is living independently of his parents and is not financially dependent on them, or is married and raising a child, he may have himself declared emancipated by a judge. This essentially grants the chronological juvenile the same legal rights as an adult---he can sign contracts, consent or refuse medical treatments, and do other things not otherwise available to children.

Imagine a process by which a psychiatric patient could claim absolute treatment decision rights. He has perfect insight, has a reasonable understanding of what his illness is and what the symptoms are, the effects these symptoms have on his loved ones and employment, and all the possible ramifications of getting sick (yes, even the risk of suicide or criminal acts). Let's temporarily suspend all the obvious objections to this from family, psychiatry, and society in general and assume for the sake of discussion that such a process were magically adopted by the legislature.

Voila. You're free.

What happens next?

Ideally, nothing different. The patient gets better on his own or with the voluntary help of a mental health professional on either an outpatient basis or with a consenting inpatient admission.

Maybe he doesn't get better, but also doesn't want the "help." He struggles along on a daily basis, maybe functional or not-as-functional as he might be. Maybe he doesn't struggle along. He stops eating, stops bathing, stops drinking, loses weight and his family gets worried. He still doesn't want the "help."

Here's the point where everybody really starts getting nervous. The ugly question, the question not to be said out loud by any psychiatrist:

Should a psychiatric patient have the right to let himself die? (I feel a bit sick just writing that.)

At this point let me be clear that my own personal opinion is NO. This is only a theoretical discussion.

Now let's make things even more complicated. I'm going to draw on a real life, actual legal opinion for this hypothetical.

Before our hypothetical patient drew up his motion for emancipation he had to be assessed as competent to file for emancipation. Psychiatric advance directives have a similar requirement. But the Federal Court of Appeals for the state of Vermont has said that this is a violation of the Americans with Disabilities Act since medical patients don't have to prove competence before signing a medical advance directive. In Vermont, a theoretically incompetent person could sign an advance directive refusing all psychiatric care.

Personally I think a formal emancipation process would be better than taking that risk.

I could take this one step further and make the hypothetical even more extreme by pointing out that Vermont also just passed a law allowing physician assisted suicide (what if you want the right to die due to an terminal-if-untreated psychiatric condition?). I think I'll stop here for now. This slope is slippery enough.

Discuss.

What This Shrink Rapper Would Tell Congress

Recently one of our readers posted this comment:

“If any Shrink Rapper ever has the time and inclination it would be interesting to read about what you would do to fix the mental health system, particularly the issue of involuntary hospitalization, if you had unlimited funds and political resources. You've been in the trenches, it would be great to hear your thoughts.”

Simultaneously, over on Peter Earley’s blog I see that he is planning to testify next week before a U.S. house subcommittee regarding issues related to violence and severe mental illness. He is asking for people to contribute responses to six specific questions he expects to be asked. Please go over there and contribute your ideas---this is your chance to make a difference.

Meanwhile, I have my own thoughts about this which may or may not be directly relevant to the six questions, but I want to bring this to the attention of the subcommittee if Mr. Earley would be kind enough to include it. For those of you who want the "bottom line," I've underlined my main ideas.

First, a bit about why I think my experience and ideas are relevant.

As a forensic psychiatrist, I evaluate and treat severely mentally ill people who are or have been violent. I see the rare exceptions, the people who as a result of their disease commit acts that seriously injure or kill others. As a correctional psychiatrist I have also evaluated and treated thousands of prisoners, many of whom also have serious psychiatric disorders.

I will emphasize, as you've already heard from others, that violent offenses due to psychosis are the exception to the rule. Almost all crimes of violence are not committed by people with schizophrenia or other psychotic disorders. Drug and alcohol abuse is the culprit in most violent crimes and we must vigorously address this and do more to provide treatment to people with substance abuse problems at the time that they are willing to accept treatment.

From evaluating insanity acquittees, people who are found not criminally responsible for  their crimes due to mental illness, I’ve learned that one significant systemic problem is the lack of public awareness about psychosis and how to recognize prodromal symptoms. Often the early symptoms get written off as attributable to some other life stressor: the breakup of a relationship, the stress of a young adult's transition to college or some other understandable life event. Sadness, withdrawal from family, loss of interest in hobbies or friendships can be explained in this context. However, as the illness gets worse and the patient's personality changes, there is more recognition that something serious is going on. Friends, neighbors and teachers recognize psychosis only when there is increasing disorganization, inability to complete tasks, or eventual bizarre behavior and unusual statements.

Therefore, my first suggestion to address violence due to mental illness would be to provide better public education to recognize emerging psychosis.

Once the psychotic episode is recognized for what it is, the challenge for families then becomes figuring out what to do. Finding a psychiatrist and getting prompt evaluation and treatment is a tremendous challenge particularly in rural or underserved areas. In southwestern Minnesota where I was raised, there is only one fulltime psychiatrist serving a seven county area of 70,000 people. Our local Baltimore City Detention Center has a higher per capita number of psychiatrists than my hometown. That has to change.

My second recommendation is this: the government needs to provide increased funding for medical education, particularly the training of psychiatrists. There should be additional incentives, beyond Federal public health service commitments, to work in underserved regions or state facilities.

All of my patients are institutionalized but most will return to the community eventually. Insanity acquittees typically are hospitalized for substantially longer than they would have been incarcerated if convicted. The majority of my mentally ill offenders are convicted of misdemeanor property offenses that are drug or alcohol-related, and return to the community within months to a few years. Regardless of the length of confinement, we need better programs to transition patients from a public institution to the community. Insanity acquittees and mentally ill offenders need housing, transportation, educational and vocational programs in addition to addressing their medical and mental health needs. Lack of adequate community services and transition plans are a key factor in unnecessarily prolonged hospitalizations.

Many recent high profile crimes have lead the public to demand looser civil commitment standards and easing of laws for involuntary treatment. In my opinion, this creates an adversarial atmosphere and unnecessarily sets families in opposition to their mentally ill loved ones. People with psychiatric illnesses have legitimate reasons to oppose confinement, and we should examine these reasons thoroughly and address them.

Some public psychiatric hospitals, of the few that remain, are antiquated and dilapidated. We need to improve environmental conditions of these facilities and address the poor ventilation, bad plumbing and faulty infrastructure. The inpatient unit should emphasize treatment plans that respect a patient's educational level, skills and interests rather than focussing solely on disability. Inpatient safety and security are increasing concerns, leading some patients to be strip-searched arbitrarily. We must improve hospital security to protect both patients and staff from physical assault. As a recent story in our local newspaper indicates, concern about violence is not limited to free society and must be addressed within facilities as well.

Finally, we need to reinvigorate collaborative treatment planning through the use of psychiatric advance directives. Make them meaningful and useful. Currently patients don't trust them because they know doctors can override them. Ironically, doctors don't trust advance directives for exactly the same reason---because they can be revoked by patients. We need to update psychiatric advance directive laws to make them binding, effective and safe, then make sure treatment providers are educated about their use.

Thank you for reading this far. We can’t make the system perfect, but I’m sure we can make it better.

Tell Me What To Do

Note: As I was writing this post, Pete Earley reran a post he wrote in 2010 about this identical topic. Spooky! Please go over to his blog and read what he has to say about it here.

Now that states are moving to create registries of involuntarily admitted patients, I think the time has come to reconsider an old idea, specifically the use of of psychiatric advance directives (PADS).

For those who have never heard of this idea, a psychiatric advance directive is a form of durable power of attorney. It's a document that a patient creates which states the kind of treatment the patient would like in the future, if he becomes ill and loses the ability to make treatment decisions. The document may designate a person the patient wants to make decisions on his behalf---a person known as a health care proxy---or may just list the patient's wishes about various things. Here is a partial list of the issues that get addressed in a psychiatric advance directive:

- the choice of hospital the patient would like to be admitted to

- an affirmative statement requesting admission

- the types, frequency and dose of preferred medication

- consent for use of seclusion or restraint

- designation for care of children, property or pets

- person to notify or next of kin designation

- consent for use of electroconvulsive or ECT treatment

Of course, the obvious thing about this list is that there is an assumption that the person is using it to request treatment when ill, but it can also be used to document which treatments, if any, the patient wants to refuse.

But what if a patient uses an advance directive to refuse all treatment? Here likes the conundrum. What if the patient becomes violent or threatens someone else? What if the patient's condition deteriorates to the point that his life is in jeopardy? For example, someone who is catatonic and unable to eat or drink fluids? What if the patient is not dangerous or doing anything violent, but just needs supervision and nursing care (help bathing or dressing or eating) and can't live outside an inpatient unit? Should this person be allowed to stay in a hospital indefinitely (when there is a huge demand for psychiatric bedspace for voluntary patients) when a short course of involuntary medication might make them better enough to live independently, outside a hospital?

And what if the patient wants treatment, but the advance directive dictates a treatment that is experimental, ineffective, or even potentially harmful? Should an advance directive be allowed to contain a patient's request for medical marijuana? In some states, the treating psychiatrist is bound by law to follow the instructions in an advance directive and there are civil penalties for not following them.

Also, in certain cases an advance directive can be overridden by the court if the patient becomes dangerous to other patients. Depending on how the directive is written, it can also be revoked by the patient once he's in the hospital which makes the whole document rather pointless. Finally, many patients and doctors have either never heard of PADS or are not familiar enough with them to use them.

This is why I'm putting up this post now. I think the PADS have potential utility and are certainly better than the outpatient commitment laws that many states have (and that our state is considering). To keep things simple, let's start with the assumption that the patient actually wants to be treated when they are sick but loses the ability to make that decision. (In other words, the patient agrees with the treatment in retrospect---ie. "I didn't like it, but I know it had to be done.")

I'd like our readers to discuss this so we can figure out better ways to make them useful. Have you ever written or used a PAD (from either a psychiatist or patient standpoint)? What worked, what didn't? What would you like to see changed? How could it be improved? Do you have a better idea than a PAD?

If you want more information before commenting, here's a one-stop-shopping site for PAD information.