Coping With Emotions

Being a Caregiver for a Cancer Patient: Speak Up as a Patient Advocate

Communicating with your loved one's medical team doesn't have to feel rushed or intimidating.

When you are a caregiver for someone living with cancer, you also become a patient advocate. This means that asking tough questions, pushing back on certain treatments and communicating how your loved one is really feeling can become a central part of your caregiving duties. At first, talking with your loved one’s oncologist or other members of their treatment team can seem intimidating. It’s common to run into some communication challenges, especially when you’re already juggling other responsibilities, like updating your loved one’s friends and family on their progress. Once you’re settled in your role as a caregiver, learn how to be an effective patient advocate.

Privacy Concerns

Before you can begin communicating with medical professionals on behalf of your loved one, you must be permitted to do so. Privacy is serious business in all healthcare organizations, and for good reason. Take time to review the Health Insurance Portability and Accountability (HIPAA) Notice of Privacy Practices at the organizations the patient uses. Each organization, like the oncologist’s office, hospital and chemotherapy treatment clinic, will have their own privacy policies. You will need to work with your loved one to gain permission to speak with their providers.

As an approved contact, you can freely communicate with members of the medical team on behalf of your loved one. You can call the oncologist’s office or ask the radiologist questions about a recent scan while your loved one sleeps nearby. Without being an approved contact for each organization or office, you may be denied access to their information. Avoid the frustration this may cause by making sure your loved one signs all the necessary forms.

You can also combat privacy concerns by becoming your loved one’s health care power of attorney. Work with your loved one and your family attorney to make the designation official. Bring copies of the notarized form for the medical offices to file appropriately.

Make the Most of Your Time

Perhaps one of the most frustrating parts of communicating as a patient advocate is the brief amount of time you actually spend with the medical team. While this tends to be more common in a hospital setting, members of your loved one’s medical team are busy folks! In order to reach them, you may have to leave a few voicemails with a friendly nurse or request another visit to discuss an issue more thoroughly.

To make the most of your time with the team, keep a notebook specifically for medical questions, notes and information. If your loved one is in the hospital, stick around until morning rounds so that you can pull out your notebook to jot down what you hear from the doctors. For office visits or questions, you may not have to speak to the doctor directly. The nurses and care staff work hand in hand with the doctor and might be able to give you a quick answer over the phone.

Keep Track of the Details

With so many appointments and developments, it can be hard to keep track of everything your loved one has experienced. To be an efficient patient advocate, make sure to write down any important information you want to report to the medical team. If you keep your concerns written down in your notebook (or typed out on an app on your phone), you’ll remember the key details you need to pass along at the next appointment.

For example, it’d be important to share that your loved one was vomiting at 2 a.m. or that they experienced increased pain at bedtime. These informal records can support you as you push for answers from your loved one’s medical professionals and make you more confident during these interactions.

Life as a patient advocate requires some organization, patience and paperwork. However, it is worth it to be able to support the person you love.

As a patient advocate, help your loved one make informed and thoughtful care choices. UVA Cancer Center offers resources for advance care planning.

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Haley Burress
Haley Burress