Cancer caregivers: 3 tips for communicating with your loved one’s care team
By Nicole Brudos Ferrara
People who care for someone with cancer, also known as cancer caregivers, take on many roles. One of those roles is communicating with the cancer care team.
Joan Griffin, Ph.D., a healthcare delivery researcher at Mayo Clinic, says her studies have revealed that healthcare professionals have great respect for caregivers. "When we survey physicians and other care providers, they tell us caregivers are essential," she says. "Caregivers provide an extra set of ears for hearing instructions, and they provide history that a patient may not remember or be willing to share. They are allies in delivering — and receiving — challenging information. And they help physicians understand what kind of care patients will get at home."
Dr. Griffin's research has also revealed how healthcare professionals want caregivers to communicate with them. Here are her tips for communicating with your loved one's care team:
1. Establish boundaries with your loved one.
People undergoing cancer treatment will likely need a caregiver to communicate on their behalf at some point. Dr. Griffin says this can be particularly challenging if you care for a parent. "There's a different set of dynamics when an adult child is caring for mom or dad. They may not want you in their medical record or want you to know their medical history. It’s important to understand where the boundaries are," she says.
Dr. Griffin recommends asking your loved one these questions:
- Do they want to give you access to their electronic health record and their online patient portal?
- When do they want you to communicate on their behalf?
- How do they want you to communicate with the care team? By phone? Through the portal?
- Do they have a living will or another advance directive that provides instructions regarding medical care preferences if they cannot make decisions for themselves? If not, what should you be aware of if they are having surgery or will be incapacitated for a certain period?
- If they have asked you not to participate in parts of their care and they suddenly become incapacitated, what do they want you to do on their behalf?
"Having those conversations early is helpful," says Dr. Griffin. "Anticipating what's to come and creating contingency plans will make things less stressful when communicating on behalf of the patient becomes necessary. Knowing how to anticipate any of those things is hard when you're going through cancer treatment."
2. Explain your role to the care team.
Everyone providing care for your loved one needs to understand your role. The first time you go to an appointment as a caregiver, explain your relationship to the patient.
"Let the care team know why you're there and what you feel comfortable doing — and what you need from them," says Dr. Griffin. "If you're uncomfortable doing wound care or helping with bodily functions, let them know so they can find someone to help."
Dr. Griffin also recommends talking to your loved one's primary healthcare professional before treatment starts. "Ask the patient's primary care provider what the communication pattern is going to be between the oncology team and the primary care provider," says Dr. Griffin. This will help you understand your role in passing information between the primary healthcare professional and the cancer care team.
If your loved one has asked that you not have access to certain information or parts of their care, share that with the care team. "That's where a critical conversation comes in with the clinical team. For example: 'This is my dad. And he doesn't want me involved in these parts of his care. And I'm respecting that.' If the clinical care team knows that, they'll respect it as well," says Dr. Griffin.
3. Do your homework and remember: The patient comes first.
Before you participate in an appointment with your loved one, Dr. Griffin recommends writing a list of concerns and questions you want to discuss with the care team. "Do your homework and assess how the patient is doing so you can come prepared to advocate for them. If the patient isn't doing well, share the details with the care team so they can adjust the care plan or help manage the changes," she says. "It's critical to have those conversations, especially if you're managing complex medications."
Remember that the care team is focused on the patient's needs. It's best to save your personal health concerns for a separate appointment with your primary healthcare professional. "If caregivers start bringing things up about their health, it can be difficult for providers. They tell me, 'I'm not comfortable providing medical advice to people who are not my patients,'" says Dr. Griffin. These ethical concerns are related to the Health Insurance Portability and Accountability Act (HIPAA), which protects patient health information.
The exception to this rule: When your health concerns affect your ability to care for your loved one. If this is the case, tell your loved one's care team so they can help you find support.
Healthcare professionals also feel the pressure of time. "Providers tell me that the patient needs to be the focal point of the interaction," says Dr. Griffin. "They have a lot of education to pass on to the patient. They feel anything that distracts attention from the patient is doing the patient a disservice."
If you're concerned about your health, see your primary healthcare professional. If you need a trusted healthcare professional, review your insurance policy to find out which professionals are covered and make an appointment as soon as possible. "Taking care of your own health needs will make you a better caregiver," says Dr. Griffin.
Read these articles to learn more about being a caregiver for someone with cancer:
- "What to expect when caring for someone with cancer"
- "Caregiver stress: Tips for taking care of yourself"
Join the Caregivers Support Group on Mayo Clinic Connect.
Find clinical trials for caregivers at Mayo Clinic.
Also, visit these websites to find resources for caregivers: