Into the Fold: How to Include the Family Caregiver in the Care Team

Rita and Luna joined their dad, Miguel, at his weekly check-up with their local oncologist. They had just returned from a trip to see a specialized oncologist, Dr. Caletta, several hours away to pursue additional help for Miguel’s sarcoma. Their home oncologist had worked in tandem with additional providers during Miguel’s cancer treatment.

They had just gotten settled in the exam room when Miguel’s oncologist stepped in and pulled up a chair close to the family. She said, “Dr. Caletta let me know you have decided to enter hospice. We can get those wheels in motion today.”

Rita was the first to speak, saying, “We have no idea what you are talking about.”

When Family Caregivers Don’t Understand, Communication is Challenging

Family caregivers (family members or friends of the patient) have enormous communication responsibilities and health literacy needs as they participate in patient decision-making, assist with hospital discharge instructions, and contribute to care planning with provider teams.

Caregivers perceive a positive relationship and report better care experiences when communication with providers is transparent and includes an understanding of the patient’s prognosis. However, information about the disease, tests, treatment, and status of the patient is continually reported as the highest unmet need among caregivers.

Inadequate communication between providers and caregivers impedes the caregiver’s ability to act as a liaison between the patient and provider and has been shown to negatively impact caregiver quality of life, contribute to caregiver stress, and cause additional suffering. Communication difficulties are compounded by a lack of information for caregivers about their role.

In the above example, Miguel and his daughters were alarmed to hear that hospice had been discussed without including them. They later learned that Dr. Caletta and their home oncologist discussed hospice, but this had not been relayed to Miguel or his daughters.

The impact of leaving the patient and family out of the communication loop was significant. Both Rita and Luna felt a loss of trust with Dr. Caletta, but most intensely with their longtime home oncologist. In addition, they were left supporting their dad in this confusing situation. A great deal of repair would now be required for them to feel good about hospice care, putting Miguel at risk for delayed hospice services and benefits.

Improving Your Partnership with Family Caregivers

Consider implementing these practice tips as you seek to include the family caregiver in the care team:

  • Ask the family caregiver(s) how their own stress level is on a scale of 1 through 10 (1 being the least stressed, and 10 being most stressed).
  • Invite the family caregiver(s) to share how they see things going in the next month for the patient and for the family.
  • Express to the caregiver(s) that they are vital to the team and that their concerns and hopes are important.
  • Integrate the caregiver(s) concerns in your discussion with the patient and caregiver.
  • Listen to the caregiver (this means be quiet—silence is powerful!)

Imagine how different the experience of Miguel’s daughters might have been if they had been included in the conversations with oncologists. For some providers, it might be a paradigm shift to place the caregiver in the center of the care effort, along with the team and the patient. But evidence shows that integrating the caregiver is beneficial to the patient, to the caregiver, and to the provider team.

Palliative and hospice care must prioritize the clinical practice of communication. Partner and team up with the caregiver and use the communication tools in our 5-part series of caregiver courses on MedBridge to facilitate that effort.