Being the primary caregiver to a cancer patient is a long, intense experience both physically and emotionally. The cancer caregiver often experiences all the highs and lows of the patient’s cancer journey and is there to observe every detail, for better or for worse. This makes the caregiver a beacon of information on the patient’s physical and emotional well-being during cancer treatment. Yet, caregivers often express feeling ignored by their loved one’s medical team or excluded from the patient’s treatment planning. Considering that cancer caregivers often play second-fiddle to their loved one with cancer in other areas of life, it is imperative that the caregiver feels included for continued success in their role.
A qualitative study of patients and their caregivers suggests that fostering appropriate involvement of caregivers and family members is an important factor for a strong provider-patient relationship.1 Doctor’s visits can be overwhelming and the patient may forget to ask a question. Caregivers are able to observe external signs of illness and can improve communication with their loved one’s health care team. It is crucial for accurate medical treatment of the patient that the caregiver is given the space to report any observations and to be fully acknowledged by medical personnel.
The caregiver also brings their own issues and concerns into the room with them. The average caregiver is 53 years old and 60 percent of cancer caregivers are caring for someone who is 65 years old or older.2 The caregiver is more than likely dealing with age-related health changes in addition to the physical and emotional demands placed on them through caregiving. Furthermore, while the average caregiver is in good physical health, the impact of their loved one’s diagnosis has an equal, sometimes even greater, emotional impact on the caregiver as the patient. When a caregiver isn’t acknowledged by medical personnel, it also can lead to the caregiver feeling ignored or undervalued. One nationwide study in 2015 found that only 29 percent of caregivers are asked about their own care by medical professionals.2
There are a few simple steps to bridge the gap between the medical team and the caregiver. Acknowledgment of the caregiver is the first and most important step. Being respectful of and being genuinely engaged in discussions of the caregiver’s wellbeing can help the caregiver feel important and needed. Such moments are good opportunities for doctors to assess if the caregiver is experiencing any physical complications from caregiving activities, showing any signs of burnout or emotional distress, or needs help navigating extended time away from work. If any of the aforementioned issues are presented, caregivers can often benefit from a referral to the treatment center’s oncology social worker, a patient navigator, a financial coordinator or to mental health services.
Founded in 1944, CancerCare is the leading national organization providing free, professional support services and information to help people manage the emotional, practical and financial challenges of cancer. Its comprehensive services include counseling and support groups over the phone, online and in-person; educational workshops; publications; and financial and co-payment assistance. All CancerCare services are provided by oncology social workers and world-leading cancer experts. To learn more, visit www.cancercare.org or call 800-813-HOPE (4673).
1 Kimberlin, C., Brushwood, D., Allen, W., Radson, E., & Wilson, D. (2004). Cancer patient and caregiver experiences: Communication and pain management issues. Journal of Pain and Symptom Management, 28(6), 566-578. doi:10.1016/j.jpainsymman.2004.03.005
2 National Alliance for Caregiving (2016). Cancer caregiving in the U.S.: An intense, episodic, and challenging care experience. Self-published. Retrieved from https://www.caregiving.org/wp-content/uploads/2016/06/CancerCaregivingReport_FINAL_June-17-2016.pdf.