How to Talk to Your Loved One’s Care Team
One of the most crucial steps in caring for someone with schizophrenia is maintaining regular communication with their care team, says Frank Chen, MD, chief medical officer at Houston Behavioral Healthcare Hospital.
This can be challenging, especially if your loved one is resistant to treatment or prefers you not to be involved.
“There can be a lot of denial about the diagnosis and uncertainty about how to interact with the healthcare team,” Chen explains, drawing from personal experience. His own brother was diagnosed with schizophrenia at the age of 26.
How to Stay in the Loop
Here are some steps you can take to stay informed about your loved one’s care:
Organize the necessary paperwork: Encourage your loved one to complete an information release form from their healthcare provider, which will allow the provider to discuss their medical care with you. They can also appoint you as their healthcare proxy, enabling you to make decisions on their behalf if they become incapacitated, such as during a psychotic episode. Their doctor might assist in persuading them to sign these forms. If they refuse, there are still ways to stay involved in their care, says Dr. Frank Chen.
Attend appointments with them: Your loved one might appreciate your presence during appointments with their doctor or mental health provider, whether you join them in the room or wait outside. Either way, it’s beneficial to be there, according to Dawn Velligan, PhD, a psychologist specializing in schizophrenia at UT Health San Antonio.
“Oftentimes, if a patient is alone at a medical appointment, they’ll just tell the doctor that they are doing fine, and there won’t be any changes made to their treatment plan,” Velligan explains.
However, if you’re present, you can provide the healthcare provider with important updates on:
- How your loved one is responding to medications
- Their daily functioning
- Any concerns you have about their safety
It’s helpful to come prepared with a list of questions or topics to discuss with the provider, advises Dr. Dawn Velligan. These could include:
- Any physical or mental symptoms your loved one with schizophrenia has experienced
- Their response to current medications, including any side effects
- Whether they’ve improved or worsened since the last appointment
- Any other observations you’ve made
While your loved one should do most of the talking, make sure your questions or concerns are addressed.
Keep communication open between appointments. If your loved one experiences side effects, refuses medication, or their symptoms worsen, inform their doctor. You can call the office, or send an email or message through an online patient portal. This is possible even if your loved one hasn’t given consent for you to be involved in their care.
“Even if the provider legally cannot speak to you, you can still provide them with information,” says Sarah Fogel, a licensed clinical social worker in Fairfield, CT.
If you have permission to communicate with the provider but are having trouble getting responses, be persistent, advises Dr. Frank Chen.
“This happened to me with my brother’s care, even though the providers knew I was his sibling and also a psychiatrist,” he says. “It’s crucial that they hear from you, especially if your loved one is decompensating and not making the best decisions at the moment.”
If Your Loved One Goes to a Hospital
If your loved one with schizophrenia is hospitalized, either voluntarily or through involuntary commitment, it’s important to be involved, says Sarah Fogel. If possible, try to be present when they’re admitted to the ER to provide the hospital with information about their care.
If you learn about the admission after the fact and don’t have permission to speak directly with the medical staff, Fogel suggests dropping off a letter for the care team at the hospital. The letter should include your concerns and any relevant medical information, such as a list of current medications. This information can assist the medical team in assessing your loved one and developing an appropriate treatment plan.
If you’re legally authorized to participate in their care, provide the medical staff with a complete medical history. Additionally, if there have been changes in their symptoms since hospitalization, make sure to update the doctors.
“Families often focus on how patients were doing at home before hospitalization, but that may not always be helpful,” says Dr. Hossam Guirgis from The Ohio State University Wexner Medical Center. “We need to know how they’re doing now compared to before to evaluate the effectiveness of the treatment we’re providing.”
