Being an Advocate for Your Loved One

“As an advocate and a caretaker for my parents when they were diagnosed with cancer, I quickly learned the importance of keeping detailed notes and important paperwork with me at all times. Without a moment’s notice, I found myself needing to recite a list of complicated medication names, which were ever changing, along with dosage instructions and allergy information to a member of our healthcare team. Having documentation on hand to support your position can be an invaluable asset.”

Meg, Daughter of Cancer Patients

Having an advocate throughout diagnosis and treatment can be invaluable to a cancer patient. In this role, you share the responsibility for many things to help diffuse the burden that comes with all the medical discussions, personal obligations, and new tasks facing your loved one.

It is important, however, to discuss your role with your loved one and within the family to ensure agreement on the best way for you to help. This gives your loved one the most appropriate support for his/her situation and personality while minimizing your stress. The following list can help with that discussion.

These suggestions have been compiled with the assistance of our special contributor, Jeannie Moore, Patient Support Manager with the Colon Cancer Alliance. You may also find helpful resources in our Getting Help section.

Help maintain medical records

A cancer patient will interact with a variety of healthcare professionals, many requiring similar information. Setting up a three-ring binder with a dividing system that works for your loved one keeps this information easily accessible and saves time in preparing for each healthcare interaction. Examples of what might get stored in this binder include copies of the following:

  • Insurance cards and contacts
  • Medical team contacts/business cards
  • Legal documents (Advance Medical Directives, Durable Power of Attorney)
  • Calendar with healthcare appointments
  • Medical history
  • Medications
  • Lab test results
  • Medical imaging (CT scans, MRIs)

Ensure legal documents are in place

While it may seem unnecessary, as well as a stressful topic to bring up, ensuring certain legal documents are in place early avoids additional stress and complications should your loved one face a difficult medical situation. These documents include Advance Medical Directives, which identify treatment and care preferences should your loved one be unable to make those decisions, and a Durable Power of Attorney for Healthcare, which identifies who will make decisions on your loved one’s behalf should he/she be unable to do so. Our Getting Help page links to more information in this area.

Let the healthcare team know your role and how to reach you

It is important for members of the healthcare team (doctor, surgeon, social worker, etc.) to know that you will be participating not just as a family member or friend but also as an advocate. This may make you feel more comfortable with your role in future conversations and helps ensure you are included in important discussions.

Prepare for doctor visits

Assisting your loved in preparing for an appointment with a medical professional will help the appointment be productive and focused, particularly during critical discussions about prognosis and treatment. The key preparation steps are updating your medical notebook and organizing questions for the doctor. Our Checklist for Talking with Your Doctor guides you and your loved one with this step.

Participate in appointments

Having someone else listening, taking notes and asking questions can help your loved one process critical information. Here are some considerations for the appointment. (Be sure to agree with your loved one on your role in the appointment beforehand.)

  • Take notes so you can discuss the information shared after the appointment.
  • Help communicate information about your loved one’s physical and mental well-being.
  • Ask questions about anything you don’t understand, and speak up if you don’t feel comfortable with an answer to a question.
  • Make sure you understand potential side effects of treatments being considered.
  • Clarify whether your loved one needs to make a decision immediately or whether there is time to consider the options.
  • Learn how to get in touch with the medical team again as needed.

Recognize the contributions of the medical team

Separate your stress about the situation from those trying to help your loved one, taking the time to build good rapport with these experts on whom your loved one depends.

Communicate with friends and family

Dealing with a cancer diagnosis and the subsequent decisions can be exhausting. Well-meaning friends and family may want updates, but this may task your loved one with additional stress. Conversely, it is not uncommon for friends and family to go back to “life as usual” after the initial diagnosis, leaving your loved one feeling isolated. Follow the lead of your loved one to see how you can help engage his/her support network. This could be by making phone calls, setting up a group email list and sending updates, or using Internet tools like Facebook, Twitter or Caring Bridge for people to follow your loved one’s progress.