As a caregiver of someone living with and after cancer, you may be attending medical appointments and dealing with a variety of healthcare professionals who are directly involved in their medical care, known as their Circle of Care. Knowing how to communicate and manage relationships with this team of professionals effectively can help streamline treatments, avoid redundancies, and create a more harmonized treatment experience for the person you are supporting. Here are some suggestions to encourage meaningful communication between you and Circle of Care team members, as well as tips on advocating for the person you support.

Being an Advocate for the Person You Support

Receiving a cancer diagnosis can be overwhelming.  As a caregiver of someone diagnosed with cancer, it may be your desire or responsibility to ensure you become a primary point of contact for a Circle of Care team to allow the person you support to focus on their treatment and recovery. Healthcare professionals within their Circle of Care may even rely on you to share health status updates for the person you support. 

The details of these updates may include:

• Collecting day-to-day symptom, status or treatment information
• Transportation to and from appointments
• Ensuring all lab tests are done and following up (if needed)
• Picking up, preparing, and delivering medications
• Researching certain treatment options and risks
• Managing insurance (if needed)

However, patients and caregivers sometimes do not feel heard by the healthcare team. If you feel that professionals are not valuing you or your loved one’s opinion, you must advocate to ensure they are getting the best possible care.  

Advocating for the person you support may require that you:

• Prepare. Have a list of questions or notes printed off and ready to discuss with the healthcare team. This shows that you are organized and will minimize the chance that you forget what you want to say.
• Be assertive. This can be difficult, but it does not mean being rude or showing aggression. Be respectful and direct, and tell the team that you do not feel valued or heard.
• Mobilize resources. 
  • Ask for a team meeting involving more members of your loved one’s family or friend care team.
  • Enlist a social worker. Social workers are healthcare professionals who specialize in navigating the healthcare system and organizing care delivery with the best possible specialists, always with the patient prioritized.  

Communicating with Healthcare Teams

1. Write down all relevant talking points or things you would like to discuss.  This may include, but is not limited to, documenting new symptoms or changes in behaviour, questions about upcoming procedures, or concerns about prognosis and condition progression.
2. Record the answers (either written or on your phone) or ask if you can use an audio recording device.
3. Be thorough and honest with the healthcare team, and make sure you tell them all the therapies and medications your loved one may be on, so they have a full picture of the health of the patient.
4. Be brief.  Medical professionals are busy, and communicating concisely is important and can allow for more discussion to be had.
5. Gather all medications and put them in a bag to bring to the appointment, including the dosages.  This should include all prescription medication and over-the-counter drugs, such as herbal supplements, vitamins and minerals.
6. Bring insurance information (if applicable).  While many services in Canada are covered, there may be outstanding accessory services that may accept private payment options that insurance may cover fully or partially.  
7. Record any upcoming appointments in your phone or with a calendar.

Caregivers and Patient Privacy

Some laws protect sensitive patient information, the most important of which is the Personal Health Information Protection Act (PHIPA). It applies to almost all healthcare providers in Ontario. 

This law outlines patient’s rights, including:

• How patient information is collected, used and disclosed by their provider
• The right to copy or view patient healthcare records
• How patient information is shared (and with who)

Under PHIPA, caregivers and the healthcare team can share information about a patient as long as the patient has consented to it. Make sure you have a conversation with the person you support before attending any medical appointments and that they understand that they may withdraw this consent at any time.

Summary

Acting as a caregiver for someone living with and after cancer can be challenging. Knowing how to best prepare for discussions with the healthcare team can help manage this stress. Contact us today if you have any questions about how to communicate or manage relationships with any Circle of Care team member involved in fatigue-related care for a person you support.