Caring for Caregivers—A New Integrative Care Path for Advanced Lung Cancer Patients and Their Caregivers

Two million new cancer cases are projected for the United States in 2020, with higher deaths from lung than breast, prostate, colorectal, and brain cancers combined. ¹ Patients with advanced lung cancer face significant health and treatment burdens while navigating the health care system. Palliative care is recommended and sought during earlier courses of advanced diagnosis, and is designed to alleviate patients' suffering and burden, while improving their quality of life. ^2,3 Patients with advanced lung cancer often depend not only on end-of-life palliative care but also on their caregivers for critical support during their cancer journey. The cumulative burden on caregivers is well documented, with detrimental effects on caregiver quality of life and psychologic distress over time. ⁴ Evidence shows that the more time caregivers devote to caring, without reprieve or support for their own wellness, the higher the chance they will experience burden, burnout, and decreased well-being that may compromise the quality of care given to patients. ^{4 –10} Neglecting the caregiver role may be deleterious to patients. Broadening disease management, by embedding health and wellness coaching (HWC) into an integrated palliative care approach for caregivers of advanced lung cancer patients, may address this challenge. As hospital systems are not formally implementing caregiver programs, ¹¹ strategies to implement such programs into real-world hospital settings are necessary. Translating the concept of caregiver interventions and studying the implementation process in a clinical context is a critical next step. ^11,12

HWC is an established modality to improve well-being by facilitating behavior change through partnerships between patients and clinicians, and “dialogue, goal-setting and accountability.” ¹³ However, there is a lack of clarity around HWC interventions and the role of coaches in clinical care. Further research on the implementation of HWC interventions for caregivers of palliative cancer care patients is called for. ¹⁴ For these programs to be successfully implemented, the authors propose dissemination of HWC as a valid adjunct treatment ¹³ in palliative care settings through presentations, pamphlets, and workshops for clinical partners. Dissemination of definitions, terminology, role delineation, and certification of coaches could limit confusion clinicians have over the role and value of HWC and may encourage clinical partners to adopt HWC for caregivers in palliative cancer care settings. ^14,15 The authors are proposing to study the implementation process for a novel scalable HWC care model that is integrated within palliative care services. This innovative model departs from the usual palliative care support by offering a wider focus over time, to reduce the caregiving burden and enhance caregivers' well-being. Caregiver HWC can be delivered in person or remotely to form part of the clinical responsibilities of the integrated palliative care team, as an adjunct to care plans for patients. Training palliative care staff in the tenets of HWC could enable them to identify the most common caregiver-centric burdens, providing the necessary support and resources to caregivers to encourage continuing efforts to support palliative care patients. Supported caregivers could lead to better patient-reported quality of care outcomes and a shift in the informal cost to the health care system of caregiving.