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.
14 brutal years. All misdiagnoses because of severe brain damages. Forced electric shock. 1000 years lost
No brain agonizing pain. Never wake or sleep. Was never psychiatric unfortunately but was a human being and mother even though last psychiatrist at N.Y. Presbyterian hospital westchester told family member she is subhuman and has no life. Lies about delusions ect. Cant really open eyes. Paiinnn no memories. Crushed head
30 electrical lobotomies in ny in 21st century. Require home hospice care and a lot of screaming and moaning. Mute and unable to walk would have been fine but not like this. Ouch.
Recently I was hospitalized for suicidal thoughts. I stopped eating and drinking because I wanted to die of dehydration. I was given IV fluids due to passing out a few times. It really helped me physically and mentally. My doctor would have had to go to court to intervene had it not been for the PAD I completed last Fall which stated I could be given artificial nutrition and hydration if I quit oral intake due to psychiatric illness. I didn’t even remember that part of my PAD but am sure glad I put it in there as it speeded up necessary treatment. Every person with a serious mental illness needs to do what they can to formulate PADs that are legal in their state.
We have got so used to saying things like “she has bipolar disorder” and “he has schizophrenia,” etc., that we forget that these are labels that are derived from a highly disputed checklist. We need to remember that there are no brain differences between people with these conditions and normal people (and this is why there are no objective tests done to “detect” them). Also, ALL symptoms listed in DSM (used in the labeling process) are normally distributed in the population – that is, they happen as a continuum in the population [reference: Understanding Psychosis and Schizophrenia (2017) by the British Psychological Society Division of Clinical Psychology]. It is just that as a result of specific life experiences, some people sometimes have extreme readings in some of the symptoms. These people are the ones who receive labels and are often told that these are life-long conditions, taking away all hope from an individual. Labels also contribute to stigma as well as negative expectations that lead to negative outcomes through “nocebo effects” (i.e., opposite of placebo effects).
If doctors really want to have a label, they should have some type of a coding system that can be used by doctors only to record an individual’s level of stress, the level anxiety, etc., so that the progress of the patient can be systematically monitored.
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