Post-traumatic stress disorder can develop after individuals experience an event that goes beyond their usual stressors, affecting a broad range of people. It is associated with exposure to death or threatened death, including a sudden, catastrophic event due to a medical incident. A cancer diagnosis’s significant psychological stressors can affect not only patients, but their caregivers as well.

As many as 49% of patients with cancer are at risk for clinically significant levels of anxiety and 38% are at risk for clinically significant levels of depression, according to data collected through the Cancer Support Community’s (CSC’s) cancer experience registry. Additionally, nearly half of caregivers have anxiety levels that are substantially higher than the national average and one-third face substantially higher fatigue and depression levels. Nationally, the rates for levels of anxiety and depression are 19.1% of U.S. adults aged 18 and older and 8.4% of U.S. adults aged 18 and older, respectively.

Early and regular integration of palliative care (PC) improves patient and caregiver outcomes in symptom management, quality of life, psychosocial health, communication, shared decision-making, overall satisfaction—and even survival. Health systems also benefit through reduced emergency department visits, hospitalizations, and intensive care stays; increased completion of advanced directives; and improved quality of end-of-life care. Both the Centers for Medicare and Medicaid Services’ (CMS’s) Oncology Care Model and many oncology organizations, including ONS, support the approach for patients with cancer.

Cancer caregivers are silent and sometimes forgotten victims of the COVID-19 coronavirus pandemic. Its impact on patients with cancer and healthcare providers is widely discussed, but it also affects caregiver responsibilities and burden.

Finding comfort among loved ones at home can be conducive to healing in all of its dimensions for patients with cancer. For patients in home care, many aspects of treatment and day-to-day medical care are done by loved ones or family members. In the United States, nearly 4.6 million at-home caregivers are tending to patients with cancer. Although many at-home caregivers embrace the responsibility, managing successful oncology care can be a complex burden for family members—many of whom are likely unprepared for the stressors of cancer care.  

In coffee shops around the country, between clicking cups and grinding coffee beans, former second lady of the United States, Jill Biden, EdD, is quietly gathering small groups of oncology nurses, care coordinators, social workers, and family members who support patients with cancer to discuss the obstacles facing caregivers throughout the cancer journey. As part of the Biden Cancer Initiative’s (BCI’s) continued work to improve oncology care, this coterie of caregivers is heralding the trials and triumphs that come with addressing the physical, social, emotional, and spiritual needs of patients with cancer.

Family members are often the first people to step into the caregiver role when a loved one gets sick. However, studies show that caregivers face unintended burdens and potential consequence as a result of the support and care they give to loved ones.

Phil is a 63-year-old man who is admitted to the inpatient oncology unit for severe pain resulting from metastatic small cell lung cancer. His wife and two daughters are at his bedside. Earlier in the day, the medical oncologist discussed additional treatment options or hospice care. Phil decided on comfort care with the hope of getting his pain managed and going home on hospice.