Communication between Caregivers and Providers

“Millions of family members and friends play major roles in coordinating care on behalf of cancer patients…. You may be asking, ‘What can I, a caregiver, do to make sure I am heard?” - Ranak Trivedi, PhD

Millions of family members and friends play major roles in coordinating care on behalf of cancer patients, attending clinic visits, managing the treatment regimens, taking patients for their chemotherapy and radiation appointments, and providing all types of support at home. They also take on advocacy roles on behalf of the patients especially around managing symptom side effects and ensuring that patients are getting comfort care that they need.

AARP recently surveyed 267 physicians and 133 nurse practitioners to examine their perceptions of caregivers, and the results are heartening. Ninety-seven percent of respondents noted that caregivers play important roles in patient care, 86% reported a strong interest in working with caregivers, and 75% were confident in their ability to work with caregivers. Yet, studies by my team and others find that caregivers across all chronic and serious illnesses feel marginalized by their clinical care teams. Caregivers and patients both note that even when they have documented HIPAA release forms, many care team members balk at sharing important medical information with caregivers unless patients are also present.

So, what gives? Well, providers in the AARP survey also shared many barriers to working with caregivers. These included communicating with multiple caregivers, not being aware who the caregiver was, confusion when caregiving roles fluctuated, finding it time consuming to engage caregivers, and inability to reach the caregiver. I speculate that the focus on patients as individuals throughout medical training leaves many clinicians ill-equipped to navigate patient’s social systems, especially when the caregiver is not an “obvious” person such as a significant other. Certainly, there are many kind, generous clinicians who engage caregivers and even provide them with needed emotional support. Simply put, our systems are not built to systematically, thoughtfully, and efficiently engage caregivers.

You may be wondering: What can I, a caregiver, do to make sure I am heard? Here are some general strategies you can try. First, where possible, have your loved one who is the patient sign a HIPAA waiver that allows you to access all their medical information. This gives you the legal right to become involved in all aspects of care.

Second, make sure that the patient additionally has informed the care team of your role. This will have to be repeated with new care teams, and especially if you are a long-distance caregiver who may not be accompanying patients to their visits.

Third, come prepared when communicating with the care team. Make a written list of your questions/concerns, and write down the answers as they are discussed. It is also a good idea to email the care team a summary of your conversation (if that is possible) to clear up any miscommunication. Both my parents are smart and medically savvy, yet there are gaps when I ask them specific questions after my mother’s oncology visits. Talking directly with her oncologist has frequently clarified information for me.

Fourth, prioritize questions/concerns that providers can address. Think to yourself, is this the right person who can help me? For instance, if you are emotionally overwhelmed as a caregiver, instead of talking with the oncologist, maybe you can ask to speak with a mental health provider within the oncology practice.

Finally, try and try again! The old adage that the “squeaky wheel gets the oil” applies, and sometimes you have to ask the same question of various people until you get the right answer. I have seen this repeatedly in my mother’s treatment, especially when managing advanced cancer where the treatment options and outcomes are more complex. Do not shy away from advocating for your need or those of your loved one.

I hope that these tips are helpful when you communicate with providers.

Until next time,