Ask Dr. Jill: What is a Mental Health Proxy?

Dear Dr. Jill,

I lost my adult sister to suicide. Though we knew she was struggling with a mental health condition, she lived in another state, and we depended on her own reporting of how she was doing. Was she really getting help? Was she taking her medication? and so forth.

In retrospect, we feel it would have been helpful to have a pre-arranged partnership authorized by her, whereby we could have talked directly to her doctor, her employer, etc. Do such arrangements exist?

Thanks,
Steve

 

Dear Steve,

I’m sorry to hear about your sister’s death by suicide. My thoughts are with you.

As you suggest, when people are in the middle of a mental health crisis or experiencing increased suicide risk, it would be helpful if they had a support network already in place and authorized to help them navigate their care. There are a few ways for a person to share their health information with family or friends and engage them as a support team so they can assist, especially in a crisis.

In all cases, it is up to the person to have conversations with those they would like to involve in their care. If the person is not aware there are options to engage others in their care, friends, families and the health care team can let them know these opportunities exist by saying something like, “I’m here to help you in any way I can. Did you know you can give doctors permission for me to be involved in your mental health care? If you don’t give them permission, they won’t be able to talk to me and I won’t be able to make sure you have the care plan you would want.”

While not legal advice, since I’m a psychologist not a lawyer, below are some ways family and friends can support a person’s mental health care:

A simple way a person undergoing care can include others in the conversation is by providing consent for health care providers to share information with a family member, friend, neighbor or co-worker. Under HIPAA (the federal law that protects health care records from being shared without the patient’s consent), a health care provider cannot share information with you unless the patient agrees to it.  A signed, written consent form will allow you to know what is happening with their care. Almost all health care providers have such forms.

In addition, there are vehicles called “advance directives” that can be used to help a family member stay involved in the event that a person loses the capacity to make health care decisions. One of these advance directives is called a “mental health care” or simply “health care proxy.” It allows an individual to authorize another person to make care and treatment decisions if they are unable to make those decisions due to mental incapacity. Generally, a doctor will have to make the determination that a person is mentally incapacitated (in rare cases this requires a legal process). The patient can appoint one or more individuals to make care decisions as necessary. The patient can fill out the form or give verbal instructions to their health care proxy as to the kind of care they want. A health care proxy is designed to assure that the individual’s wishes are honored as to the kind of care they receive, even if they are unable to make decisions at that time. With everyone on board, having a mental health proxy can improve communication with family, doctors, and the professionals involved in treatment.

There are other kinds of mental health advanced directives that allow a person to detail the specifics of their care, who can be involved, where it is provided, and what form it will take. The patient can spell out a specific plan for care that would be organized and put into action in the event they lack capacity. A mental health advanced directive can also address issues like contacting an employer, dealing with belongings, taking care of pets, etc. in the case of incapacity. Such a plan is best developed with those trusted individuals who understand the person’s mental health condition, and would be comfortable carrying out the plan. It can help for the person whose health is in question to include their doctor and mental health professional, as they provide treatment.

Both types of advanced directives are legal documents that must be witnessed and, typically, notarized. Each state has different requirements, depending on what path the patient takes. It is helpful to consult legal counsel in your state. It is also helpful if each person involved, including family, friends, doctors and other professionals, have a copy of the plan in advance, and understand the individual’s expectations. Having an advocate in place can play an important role in managing and optimizing one’s mental health.

For some individuals who lack capacity, guardianship can be pursued, which would allow a person’s financial assets to be appropriately guarded.  Generally, however, guardians cannot make treatment decisions.

Steve, thank you so much for your question. Please keep in mind that without your sister’s willingness to have entered into such a partnership with you and your family, nothing could have been done or shared. Her clinical care team could not have shared information without permission. Family and friends can reach out to the health care team and leave messages noting concerns, but the team cannot even acknowledge that they are seeing her or that they received the message. A person’s right to make their own health care decisions, and to share or not share information, is tightly guarded by the law. It can be very frustrating for family members who feel shut out. Talking with other families who are living with the same concerns and experiences can help.

Many people who have lost a loved one to suicide look back in retrospect and wonder if they could have done more. Wishing you could have done more sometimes translates into feeling guilt and it’s important to remember that wanting to do more does not mean you could have done more. Please be sure to reach out to others for support. You are making a positive difference by sharing your experience with others.

For those who would like to learn more about mental health advanced directives, there are many places that offer free information and authorization forms, as well as support, including:

Mental Health America

National Alliance on Mental Illness

American Psychiatric Association

Thank you,

Dr. Jill