The Silenced Voice of the Caregiver

Stephanie Jackson, DNP, MSN, RN, AOCNS, BMTCN

A 75-year-old woman was recently diagnosed with stage III lung cancer. She has a history of interstitial lung disease, exposure to secondhand smoke, hypertension, and hyperlipidemia. After receiving her diagnosed workup, the nurse navigator reviews the plan for radiation and chemotherapy. To ensure oversight of her first cycle of chemotherapy, she is admitted to the hospital and discharged following recovery of her nadir. During her hospital stay, the medical team noticed her cognitive deficit manifested as repetitive questions, an inability to process information, and short-term memory loss. She is scheduled to receive follow-up in the outpatient clinic in 2 days, but she does not arrive to her appointment. The infusion nurse calls the patient to see why she missed her appointment, and the patient informs the nurse that she was never told that she had an appointment. The infusion nurse asked whether her family could assist with bringing her to future appointments, but the patient stated that she had no family to assist. Several weeks later, the patient’s daughter contacted the physician to inform him that she has noticed unusual behavior and would be accompanying her mom for all future appointments.

According to the International Agency for Research on Cancer, there were more than 18 million new cancer cases in 2018.¹ This terminal illness led to an estimated death rate of 9.6 million and has been clarified as a one of the leading causes of morbidity.² Given the complexity of care required for patients with cancer, caregivers are an essential component to the management of disease. The role of the caregiver is often occupied by a family member or an individual who is closely connected with the patient. Their responsibilities may vary from living with the patient to providing emotional support, financial assistance, transportation to/from appointments, or assistance with navigating the health care system.3 Caregivers may also be responsible for the prevention of isolation through assisting the patient with remaining connected to their communities and additional family. As the severity of the disease advances and they progress toward end of life, the involvement of caregivers may increase dramatically.³

To date, there has been limited research on the impact of caregiving on the caregiver’s health. The current care delivery models focus on the patient, which leads to inadequate assessment and engagement by the caregivers.⁴ When there is delayed recognition of the caregiver’s experience, this can lead to burnout and extreme burdens. In 2019, a cross-sectional descriptive study was conducted in the oncology department using purposeful sampling to explore the experiences and burnout levels among caregivers of those caring for patients with cancer.4 The common themes identified from the study included the following: children were the most common caregivers, mild burden was the most commonly described by caregivers, loss of hope and frustration were experienced by many caregivers, and lack of social activities and leisure time were perceived by caregivers.

By comparison, an additional cross-sectional study was conducted in Iran to evaluate the prevalence of burden, depression, and anxiety among caregivers of patients with cancer.⁵ The measurements used to evaluate these variables included the Beck Depression Inventory, Beck Anxiety Inventory, and Zarit Burden Interview. The sample size included 300 caregivers, including 167 men and 133 women. The significant demographic variables included caregivers who were related to the patients, married, and self-employed. The themes identified in the results concluded that 46% of the caregivers were severely depressed, 53% experienced anxiety, and 30% had severe burden.

Financial toxicity is another common variable experienced by the caregivers of patients with cancer. In 2019, a cross-sectional observational study was conducted on 100 dyad patients and their caregivers.⁶ This study sought to evaluate the financial toxicity experienced, factors that contributed to this phenomenon, and the impact of financial toxicity on patient outcomes. The common diagnoses included in the convenience sampling included breast, gynecological, lung, gastrointestinal, skin, and genitourinary cancer. The 2 factors associated with lower financial toxicity included older patient age and higher annual income. Nonadherence to medications were associated with significant treatment expenses and financial toxicity among caregivers. Lifestyle-altering behaviors among caregivers included withdrawal from accounts and less spending on leisure activities due to a decline in the patient’s income.

As the cost of cancer treatments continues to rise, so does the burden of affordability for patients and their families. The lack of full coverage among health insurance also contributes to the burden of out-of-pocket cost and rising co-pays.⁷ Two strategies that have proven to be effective in reducing unnecessary tests include communication and cost transparency. In 2019, a qualitative study was conducted on oncology providers, patients, and caregivers to explore their preferred method of discussing the cost of cancer care.⁸ Phone interviews were conducted and analyzed using a thematic analysis. The 4 themes identified included the benefits, potential adverse effects, delivery, and timing of cost information.

For oncology nurses, it is important to advocate for patients and families through ongoing assessments for caregiver burden, financial toxicity, and effective communication that lead to poor decision-making. According to Haverfield et al, the benefits of sharing cost information result in decreased financial spending on treatments and preparation for patients. However, the potential adverse effects that nurses must be aware of is the influence patients may feel regarding the provider’s influence on the treatments selected. The teach-back method can be used to assess a patient’s understanding of the information provided by the medical team and address any information that may be unclear. Social workers are vital to assisting with the cost information and sharing the availability of resources to assist with out-of-pocket expenses. Finally, cost information should not be delivered at the time of diagnosis; this can be done after treatment and after the patient has had time to discuss their prognosis with the medical team. Addressing cost at the time of diagnosis can lead to patient depression, which can lead to ineffective coping.

In conclusion, the daughter began to accompany her mom to all appointments and became durable power of attorney. The mother was diagnosed with degenerative cognitive disorder and required oversight by a caregiver for all personal and medical care. A year later, after continuous failed treatments, the decision was made to transition to hospice. The patient passed peacefully several weeks later with her daughter and grandchildren by her side.

References

1. International Agency for Research on Cancer. Global Cancer Observatory. Accessed April 30, 2024. https://gco.iarc.fr
2. Cancer. World Health Organization. Accessed May 1, 2024. https://www.who.int/health-topics/cancer#tab=tab_1
3. Engebretson A, Matrisian L, Thompson C. Pancreatic cancer: patient and caregiver perceptions on diagnosis, psychological impact, and importance of support. Pancreatology. 2015;15(6):701-707. doi:10.1016/j.pan.2015.05.471
4. Onyeneho CA, Ilesanmi RE. Burden of care and perceived psycho-social outcomes among family caregivers of patients living with cancer. Asia Pac J Oncol Nurs. 2021;8(3):330-336. doi:10.4103/2347-5625.308678
5. Karimi Moghaddam Z, Rostami M, Zeraatchi A, Mohammadi Bytamar J, Saed O, Zenozian S. Caregiving burden, depression, and anxiety among family caregivers of patients with cancer: an investigation of patient and caregiver factors. Front Psychol. 2023;14:1059605. doi:10.3389/fpsyg.2023.1059605
6. Sadigh G, Switchenko J, Weaver KE, et al. Correlates of financial toxicity in adult cancer patients and their informal caregivers. Support Care Cancer. 2022;30(1):217-225. doi:10.1007/s00520-021-06424-1
7. Finkelstein EA, Tangka FK, Trogdon JG, Sabatino SA, Richardson LC. The personal financial burden of cancer for the working-aged population. Am J Manag Care. 2009;15(11):801-806.
8. Haverfield MC, Singer AE, Gray C, Shelley A, Nash A, Lorenz KA. Implementing routine communication about costs of cancer treatment: perspectives of providers, patients, and caregivers. Support Care Cancer. 2020;28(9):4255-4262. doi:10.1007/s00520-019-05274-2