|
Mentally ill
can control care with directives
(November
2007 Issue)
By Nan Shnitzler
These days, people writing a will are encouraged by their attorneys
to make health care provisions in the event they become incapacitated.
But such advance directives can also serve consumers of mental health
care as psychiatric advance directives (PADs).
PADs are legal documents that declare preferences for care during
a mental health crisis and/or appoint an agent or proxy to ensure
preferences are carried out and make decisions for the patient if
necessary.
While the federal Patient Self Determination Act of 1990 required
hospitals and caregivers to have advance directive policies in place,
states govern how they are implemented. Twenty-five states have
enacted specific PAD statutes. For the others, like the six New
England states, mental health instructions can be included in medical
advance directives.
Legally, there are pros and cons to both approaches, yet grey areas
abound. For example, civil commitment will invalidate any PAD, but
whether PADs can trump a process for involuntary treatment is not
clear, says Center for Public Representation Attorney Robert Fleischner,
J.D.
The primary difference between states with and without PAD statutes
is in "PAD states" doctors can override provisions they deem not
medically appropriate, says Eric Elbogen, Ph.D., MLS, a forensic
psychologist at University of North Carolina and co-director of
the federally funded National Resource Center on Psychiatric Advance
Directives (www.nrc-pad.org).
It's a thorny distinction. In a 2001 federal court case, a plaintiff
at Vermont State Hospital was injected with anti-psychotic drugs
against her expressed wishes. She sued and won based on the Americans
with Disabilities Act that the state couldn't discriminate against
people with psychiatric disabilities with respect to treatment preferences.
Yet Vermont does not have a separate PAD statute. Revocability is
another tricky issue. In most PAD states, the statutes cannot be
revoked if the principal loses decisional capacity. Elbogen says
the prohibition is based on a false assumption, that in a crisis,
people change preferences, contrary to recent research, he says.
In Massachusetts, a non-PAD state, a person can revoke an advance
directive any time, which can also be problematic. Northampton-based
Fleischner had a client with bipolar illness who in manic phase
would go off his medication with disastrous results. The client
knew he had this history and knew it was a problem. So he wrote
his PAD to say his agent should force him to take his medication.
But his refusal would instantly revoke the directive.
So Fleischner used what's known as a Ulysses clause, which essentially
tells the agent to ignore the principal and go to court to enforce
the PAD.
PADs are triggered when a physician determines loss of decisional
capacity, the ability to understand, evaluate or communicate treatment
decisions. A principal is assumed competent when a PAD is written.
"PADs are among the first laws ever meant to improve self-determination
of people with mental illness. Every other law has been about controlling
them," Elbogen says.
On the other hand, having a doctor confirm competency in a PAD
could give it more teeth. Just as in a will, an oddball provision
is more likely to be carried out if an expert confirmed the decedent
was of sound mind.
While the legal issues might seem daunting, in practice they rarely
emerge, Elbogen says. Larger looming barriers are lack of awareness
and assistance.
A 2006 Duke University study showed that participants with one-on-one
facilitation were 20 times more likely to complete a PAD than those
who received literature only, says Elbogen, one of the researchers.
The results were consistent with a national survey, so the demand
is there, Elbogen says. Further, no study participants refused all
medication and not one PAD provision was medically inappropriate
out of thousands of preferences.
The PAD process itself can be clinically beneficial when a patient
and clinician collaborate. It can improve the therapeutic bond,
contribute to patient autonomy and help prevent crises to begin
with.
Elbogen likens it to a "psychiatric resume" that can improve clinical-decision
making in a crisis. That is, if the PAD makes it into circulation.
Ideally, people keep copies of their advance directives on their
person and with their agent, doctors and likely hospitals and they
file them with the U.S. Living Will Registry that electronically
stores and securely distributes them to health care providers.
The reality is that hospitals unfamiliar with PADs throw them away.
Or PADs don't make it to treatment providers before patients are
discharged. Or, no one reads them. Elbogen likens it to a message
in a bottle floating at sea.
In that case, the patient, agent, attorney team needs to get assertive,
says Xenia Williams, MS, LCMHC, a recovered psychiatric patient
now working in a Vermont crisis center who was co-plaintiff in a
healthcare agent enforcement action. Patients must be specific in
the PAD about the treatment they want and don't want and in what
circumstances. The agent should be knowledgeable about the patient
and the health care system to best advocate for wishes to be respected.
A patient-friendly lawyer must be willing to stand behind the PAD
and the law that enabled it.
Without those three things, a patient is unlikely to prevail, Williams
says.
And that's why, despite the pitfalls, Elbogen and his colleagues
think the PAD statute is the better option. In the 25 states with
PAD statutes, every mental health department is aware of the option
and must communicate it to clinicians and providers.
"The advantage in those states is that with specific guidance and
clinician help, people are filling them out," Elbogen says.
|
