In medicine, we talk a lot about advance directives, mainly in the context of end-of-life treatment. But, recently, while treating a patient with schizophrenia, I realized how powerful and important that same document could be in caring for someone living with mental illness.
My patient had catatonia, and was gripped by psychosis. He could barely move or speak. He refused treatment, and in suffering from paranoia, also refused food and water. He wouldn’t even let us talk to his family. Soon, his electrolytes were imbalanced, and his kidneys started to malfunction.
Legally, we couldn’t force treatment until he was in danger of hurting himself. It was frustrating. Our patient, in the midst of a mental health crisis, had to develop a physical health crisis for us to do anything. It didn’t have to be that way. A psychiatric advance directive could have helped us treat this man.
As I move forward in my career, I’m realizing that I’ll need to encourage my patients with serious mental illnesses to express their wishes when they are at their best, so we can better assist them at their worst.
“It’s a win, win, win,” Dr. Marvin Swartz, a psychiatrist at Duke University Medical Center who directs the National Resource Center on Psychiatric Advance Directives, told me.
A good PAD can outline everything from what hospital you want to go to to what medications you want to be given for your mental illness. It can provide emergency contact numbers or health care proxies who can consent to treatment, said Swartz. It can even outline how to manage your affairs at home while you are hospitalized.
For patients who often feel a lack of control over their lives because of mental illness, a PAD can empower them to dictate their own health care.
“It’s something that can help patients preserve their autonomy, it can help family members take care of their family members, and it can help providers facilitate care,” Swartz said.
This is exactly why Charlene Lee, of Carrboro, N.C., put one together.
Lee told me she has a PAD because of a hospital visit that left her feeling powerless — she has bipolar disorder. After a particularly tough episode, she stopped communicating with her friends and family, and they called police for a safety check. She was hospitalized, and given benzodiazepines, a class of medications she would have normally denied.
“That decision was made for me,” said Lee. “ I really wasn’t in a frame of mind to say no.”
She added, “I advocate for the PAD because I think that having something in place says I’m serious about my mental health. I’m serious about the decisions that are being made, whether I’m able to make them or someone is making them for me.”
But like other advance directives, state laws on PADs, if they exist, vary. In New York, where I grew up, patients can write a PAD as well as designate a health care proxy. In Virginia, where I went to medical school, patients can create PADs too but they must be signed by two witnesses, who cannot also function as a health care proxy. In Massachusetts, where I’m a second-year resident in psychiatry, patients cannot write their preferences for psychiatric care. They must communicate their wishes to a health care proxy who is given the authority to make all decisions in times of incapacity.
For those states that rely on proxies, the burden falls on the patient to have difficult conversations with their family or friends. And just as people are averse to talking about end of life, said Dr. Keith Humphreys, professor of psychiatry at Stanford University, people are scared of being in a mental health crisis. “There is a human aversion to thinking about those situations and planning ahead.”
Humphreys also suggested that PADs could help people dealing with addiction who may need health care while substance use clouds their judgement.
But even states with PAD laws have put very little effort into implementing them, said Swartz. It’s an oversight that has left patients without the financial and legal resources they need to create these documents. In collaboration with the National Alliance on Mental Illness, Duke is piloting a program to train people to help patients create PADs. Swartz calls it “the equivalent of free tax preparation.”
But Swartz also said as doctors, we need to talk more about these directives. “We need to put this into people’s awareness.”
He trains his residents to use North Carolina’s advance care planning website, a statewide central repository for advance directives.
After talking to these people, I have begun advocating for psychiatric advance directives in my own practice. But it hasn’t always gone well.
I talked to my patient with schizophrenia about designating someone he trusted as his health care proxy, after we had stabilized him. He declined, saying, “I trust no one.”
While I was disappointed, I remained hopeful that he would continue to advance in his mental health recovery. In my discharge summary, I made a note about the value a trusted proxy could bring to his care, and encouraged his future providers to pick up the torch.