How Care Partners Can Advocate Without Overstepping

In the second half of our National Patient Advocacy Day conversation, Melissa Malinoski, PA-C, physician assistant at Samaritas, turns to two areas that often come up for people supporting a loved one with schizophrenia: how to advocate effectively during medical appointments and how to protect one's own well-being while doing so. Both, she said, are core to sustainable, effective caregiving.

What does it look like for a care partner to effectively advocate during a treatment conversation with an HCP, without overstepping or speaking over the patient?

MM: Nearly 9 in 10 caregivers who support a loved one living with schizophrenia rank discussing treatment options with health care providers [HCPs] as one of the top ways they provide support. A care partner can be a valuable advocate for their loved ones, as they can see and provide insight into what is happening between appointments. Care partners may notice behavioral, symptom or daily routine changes that a patient may not remember to bring up to the HCP. Care partners can fill in informational gaps, take notes, make sure concerns don’t get missed, or ask questions the patient may not think to ask. Bringing their insights and perspectives to an appointment gives the HCP information we may not otherwise have, and is important in providing care.

However, it’s critical that as providers, we hear from and really listen to our patients first. Care partners should not speak for their loved one or make decisions for them. The most effective care partners help make sure HCPs have a fuller picture so the patient can be part of making the best treatment decision for themselves.

What advice would you give a care partner who wants to understand a medication's potential benefits and side effects, but doesn't know what questions to ask?

MM: You don’t have to know all of the medical terminology to ask good questions. With 13% of care partners saying that understanding the potential benefits and side effects of their loved one’s medication is a challenge, I would encourage care partners to go into an appointment prepared to ask questions about what the medication could mean for their loved one’s everyday life. Examples of questions include: What are we hoping this medication will help with? What are the most common side effects? What should we expect when they start a new medication? Are there side effects that should prompt us to call an HCP? How will we know whether the medication is working?

I think the answers to these questions matter when deciding whether a medication is going to work for someone long term. So if an answer raises a concern or could influence that decision, that should naturally lead to the next question. I also encourage care partners to do some research outside of the appointment, including reviewing information on the medication manufacturer’s website or connecting with patient advocacy organizations for additional resources. All of this can help care partners come back to the HCP with more specific questions. The goal is to identify potential barriers that could make treatment harder for a patient, so we can ensure that those concerns are addressed before making a decision.

Supporting a loved one with a serious mental illness can be all-consuming. What does sustainable self-care look like for a care partner in this role?

MM: Care partners can play a significant role in someone’s treatment journey, but they cannot support their loved one if they do not have support for themselves, too. Caring for someone with schizophrenia can affect a care partner’s own finances, career and personal well-being, and 40% say their caregiving responsibilities negatively impact their stress levels. This data is a reminder that care partners need to make their own well-being a priority and that self-care should be treated as an integral part of caregiving and not an afterthought.

Self-care can look like leaning on other family members or trusted friends, keeping up with their own relationships and routines, and protecting parts of their life that are not centered around being a care partner, such as activities and hobbies that they enjoy. It may also mean setting boundaries and being clear about what is and is not theirs to manage. I also encourage care partners to consider joining a caregiver support group or connecting with organizations like the National Alliance on Mental Illness or Mental Health America for additional support.

Treatment works best when there is a broader support system around the patient. A care partner should be part of that system, not the entire system. Care partners taking care of themselves is what helps them keep showing up in a sustainable way for their loved one.