How to Be an Advocate for a Loved One with Mesothelioma

When it comes to being a patient advocate, it can mean different things to different people, but the goal remains the same—to make sure the patient’s voice is heard.

If a loved one has recently been diagnosed with mesothelioma, an aggressive form of cancer, you realize that this is a very challenging, stressful, emotional and frightening time for them.  Often, the diagnosis comes at the later stages of the disease; therefore, the patient is focused on their health and treatment options.  You may assume, or be asked to take on, the role of advocate for your loved one.  Having a better understanding of what this entails will allow you to be a great support system in many ways.

Roles of a Patient Advocate

When you assist your loved one as a patient advocate, there are many roles that come with the title:  Researcher & Information Gatherer, Record Keeper, Communicator, Caregiver, and Supporter.  Learning a little more about these roles will better prepare you to take on these tasks.

Researcher & Information Gatherer – In order to be prepared to speak on behalf of your loved one, you must be informed.  This involves researching and gathering as much information as possible about mesothelioma, treatment options, your loved one’s specific diagnosis, and their legal rights to file a claim.  You want to learn as much as you can on your own to lessen the burden for your loved one.

Record Keeper – As your loved one’s advocate, you are basically another set of eyes and ears during doctor appointments, medical treatments, and meetings with lawyers.  In addition, you have a greater understanding of the patient’s health on a regular, if not daily basis.  It is important to pay attention to details and keep records on everything from appointments to treatments to symptoms.  Having this detailed information helps the doctors provide a better care plan for your loved one.

Communicator – Whether you are speaking for your loved one or listening for details, you want to ensure they receive the best care possible.  Be prepared to speak up and ask the questions that need answered.  Your loved one will appreciate the support in such a difficult time.  Identify the best ways to work and communicate with their medical team, which will ultimately impact their plan for treatment.  In this role, you may also need to communicate with insurance companies to ensure their treatment has the proper coverage.

Caregiver – The role of caregiver is often the most important and “given” task, but possibly overlooked.  As a patient advocate, you may assist your loved one with medications, trips to the doctors, meal preparation, their overall daily health needs, etc.  You are the one they turn to when needing care.

Supporter – Being an advocate for your loved, you often provide emotional, physical, psychological and, sometimes, financial support.  You offer a sense of comfort and stability.

Supporting a loved one diagnosed with mesothelioma can be stressful and tiring, but the positive impact it has on the patient makes it worthwhile.