Many patients would be unable to remain in their homes without family support, leading to costly hospitalizations and nursing home admissions, but these caregivers often need education on how to care for their loved ones at the end-of-life, a well as lessons self-care and how to cope with loss, stress, and grief.
Hospice providers adhere to an interdisciplinary, patient-centered care model that supports family members and loved ones in addition to the patients themselves. Care and training for the caregiver, who may be called upon to reposition bed-bound patients, administer medications or oxygen, assist with toileting and hygiene, change wound dressings and other forms of care, helps ensure they are able to continue supporting homebound patients.
“With this kind of support for caregivers, the health systems and hospices will begin to realize financial benefits in cost savings, said Roy Remer, interim executive director for the California-based Zen Hospice Project. “For instance, they should be able to see a decrease in after hours calls and a decrease in emergency department visits because the capacity of the family caregiver to meet and hold the experience of the one they are caring for increases.”
Hospices reach caregivers in a variety of ways. Most do some initial disease-specific training when the patient is admitted, covering basic needs and essential tasks, the use of any medical equipment the patient is using, as well as when and how to contact hospice professionals, the trajectory of the patient’s disease, and the dying process. An increasing number are offering online programs through webinars, videos, and even social media platforms.
Cleveland-based Hospice of the Western Reserve created a comprehensive caregiver’s guidebook, which includes details about hospice care, medical information, disease-specific information and coping mechanisms.
A rising number are going beyond the technical aspects to help caregivers address their own needs as well as the patient’s. The strain of caregiving can put family members at increased risk of depression, anxiety, fatigue, and can exacerbate their own existing health conditions, particularly when the caregiver is also elderly, frail, or ailing.
The Zen Hospice Project offers 12 training modules for caregivers focused on mindfulness practices, cultivating compassion, death awareness, and self-care. Death awareness training, sometimes called death intelligence, focuses on helping caregivers achieve a level of comfort with conversations about death and loss.
“Caregivers need practices that allow them to build emotional resilience,” Remer told Hospice News. “So many come to us at varying levels of distress in the role. They haven’t received any kind of preparation for the demands of the role. Self care can help ensure they care stay in the caregiver role for as long as possible”