“…and how are you doing?” I asked, gazing at the patient’s spouse during the history taking. She appeared flabbergasted for a few seconds followed by a drastic change in her facial expression, reflecting the amount of burden she was bearing to cope with her husband’s illness. She is used to playing a supporting role during the physician’s interview, like many caregivers, correcting the dates of procedures, clarifying symptoms and complaints, checking her notebook for facts or medication list, etc. She took her role seriously and was absorbed in it until suddenly, she became the center of attention—something new she never experienced before during physicians’ visits for her sick husband.
I repeated the question to many caregivers afterwards, and they all had varying degrees of surprise and great appreciation for putting their needs and well-being in the picture. The responses were very touching, full of emotions, and sometimes mixed with tears followed by some kind of relief because their struggle had been recognized and acknowledged.
Oncologists are aware of the burden caregivers endure supporting patients with cancer. Caregivers encounter many challenges during the course of their loved ones’ illness including emotional, psychosocial, professional, physical, and financial difficulties.1 However, oncologists themselves rarely address these issues, and typically leave them to other team members, such as social services, patient navigators, or others, to handle.
There are multiple disciplines in health care systems and advocacy organizations that provide support to caregivers directly or indirectly, and many reliable resources and materials are available online to educate them, including a section on ASCO’s patient education website, Cancer.Net. However, these are fragmented resources and do not give the caregiver the proper required support consistently. There is an urgent need to address this issue systematically.
The approach to address the needs of caregiver should be multipronged including, but not limited to, the following items:
- Document “Caregiver Care” in the physician’s management plan. Having this as a mandatory item in the “Assessment and Plan” section of physician encounter notes would bring the issue front and center and would make caregiver care an essential component of every plan of care for patients. This will remind the physician to think about the various aspects of expected support from the caregiver to provide better care to the patient.
- Acknowledge that caregivers are members of the health care delivery unit. They provide care or support to patients around the clock for extended periods of time. It is essential that they are empowered to do the best in their roles. This entails keeping them in the loop and ensuring they have what is needed to do their tasks.
- Identify all relevant resources to support caregivers, including services available at the facility, community, and national level that provide support to caregivers including social services, mental health, advocacy groups, educational materials, financial navigators, support groups, and others.
- Improve communication with caregivers. When should you contact the caregiver, and about what? There should be clear triggers to contact caregivers, with the patient’s prior consent, such as change in the patient’s conditions and care requirements, admission, or discharge. The communication should include checking on the well-being of the caregivers, verifying their understanding of the patient’s conditions and care requirements, and ensuring their ability to perform the necessary tasks or enlist other help if needed.
- Employ technology advancements to support caregivers. With more and more components of a patient’s care moving outside the health care facility, we can use technology to more easily access and capture important information bidirectionally between the patient/caregiver and their health care providers. Wearables are one example of a technology that can be utilized to monitor patient well-being.
- Incorporate caregiver care into clinical practice guidelines. Guidelines may include recommendations for caregiver assessment in a similar way to showing other recommendations for disease evaluation and work-up. Guidelines for caregiver care in general can be provided in addition to guidance for the caregiver to manage the needs for that disease in parallel fashion to patient education.
- Make caregiver care a formal component of care delivery models. For example, the Oncology Medical Home Care Model2 should have clear guidance on how to involve and support the caregiver. Caregiver financial compensation should be considered somehow and reimbursement by third-party payers should be discussed.
I realize it would not be feasible to apply all of the above suggestions at once, but all stakeholders should put in concerted efforts to address these needs.
In summary, providing systematic support to caregivers will minimize their exposure to harms and empower them to better do their job, resulting in providing better support to patients with cancer, an essential step in delivering patient-centered care.
- Kent EE, Rowland JH, Northouse L, et al. Caring for caregivers and patients: Research and clinical priorities for informal cancer caregiving. Cancer. 2016;122:1987-95.
- Woofter K, Kennedy EB, Adelson K, et al. Oncology Medical Home: ASCO and COA Standards. JCO Oncol Pract. 2021;17:475-92.