Photo Credit: National Partnership for Healthcare and Hospice Innovation (NPHI)
In the best of times, employees leave the stresses of their jobs and unwind at home. What if home brings its own though? For employees providing home care, and particularly hospice home care, there is little reprieve from mental and emotional strain. This National Hospice and Palliative Care Month, we are discussing the challenges of giving this care to a loved one and what employers can do to ease that burden on employees providing it.
The decision to become a caregiver for a terminally ill family member is one born out of love. It is a responsibility taken to provide a loved one with the comfort, affection, dignity, and quality of life they need in their final days. Hospice is not purely a time of sorrow. There are moments of connection, laughter, lessons learned, and loved shared. It’s also a time of stress, anxiety, and grief. The variance and rapid swinging of emotions during this tense and difficult time are taxing, and the people providing this care should be met with understanding by their inner circle, workplace, and larger community.
While many would choose to leave work entirely to focus on their ailing loved ones, they are often unable to walk away from work entirely. For home care in general, AARP found that, “more than one in five Americans (21.3 percent) are caregivers, having provided care to an adult or child with special needs at some time in the past 12 months. This totals an estimated 53.0 million adults in the United States.” Over half of these caregivers are also working. Regarding hospice care, there are approximately 1.5 million who receive it, and each patient likely has more informal caregivers in addition to their primary caregiver. A majority of these adults have to juggle part-time or full-time work on top of their caregiving duties as well.
Hospice caregivers do have some federal legal protections. The Job Accommodation Network notes that, per the Equal Employment Opportunity Commission, “caregivers of individuals with disabilities do have non-discrimination protections under the ‘association’ provision of title I of the ADA.” Moreover, workers may be entitled to unpaid, job-protected leave under the Family and Medical Leave Act. However, this is just the legal baseline.
There are plenty of ways that employers can step in to support their employees who are providing hospice care at home. Below are some of our recommendations.
Offer Flexible Scheduling and Paid Leave
When a loved one’s hours are numbered, the most valuable commodity an employer can offer is time. Offering flexible scheduling and paid leave is not only morally right, it also shows real returns in the workplace. According to AARP’s 2020 report, “when caregivers have particular benefits at work, they are less likely to stop working altogether. Just 6 percent of caregivers with paid sick days and 6 percent of those with unpaid family leave stop working entirely.” Employees do not forget the lack of support they were shown in their time of need, nor would they forget the compassion and support if provided to them. Acting in the employee best interests fosters loyalty, connection, and retention throughout the workplace.
Incorporate Sensitivity Training to Managers and Supervisory Staff
Only half of employed caregivers (who are not self-employed) say that their employer knows about their caregiving role. This could be due to a wide range of factors including a discomfort talking about illness or a fear that their challenges won’t be understood. Consider incorporating lessons/trainings on anticipatory grief (a type of grief where death is expected and approaching) and mourning could be beneficial in shaping workplace culture and helping supervisory staff provide affected employees with the tone, messaging, and accommodations they need. Consider Ahead’s “Anticipatory Grief in the Workplace: A Leader’s Guide to Supporting Teams” and Cruse’s “Anticipatory Grief: ‘The Long Goodbye’” as starting points.
Prioritize Mental Health
Caregivers, through their nature of their role, experience an understandably wide array of emotions that can be hard to manage on their own. While employers do not need to be experts on mental health, they should be able to provide their employees access to grief-informed mental health specialists. This can be through comprehensive mental health benefits, directing an employee to a caregiver employee resource group, or connect them with the Hospice Foundation of America, National Alliance for Caregiving, or the National Partnership for Healthcare and Hospice Innovation (NPHI) to find local caregiver coalitions and/or build community online.
Make Caregiving Policy Inclusive for Chosen Family as Well
Federal protections for caregivers apply to those caregiving for a child, spouse, parent or next of kin. However, so many people care for those outside of this “traditional” dynamic. Unmarried partners or other chosen family members (often a dynamic sought out by LGBTQI+ people) have varying levels of protections at state and local levels across the country. Companies can do their part to expand their policy’s language to be more inclusive of leave for families of all kinds and to respect all forms of grief.
Challenge the Caregiver Gender Gap
As an organization fighting for gender equity in the workplace, we recognize that caregiving is disproportionately taken on by women. For women, this is furthering a lifetime of disproportionate, unpaid labor at home. For men, the National Institute of Health finds that, “male spousal or adult-child caregivers were more likely to be socially isolated over time than their female counterparts.” Encouraging a culture that promotes men and women sharing the responsibility of care equally benefits everyone. This includes disseminating educational materials about male caregivers during this month and having gender neutral leave policy language.
Caregiving for a hospice patient is a generous, loving, important thing to do. It’s only right that those who shoulder this responsibility on are respected and supported by all corners of their community. We hope to see employers rise to the occasion to support all employees who offer so much to those in need.
RALIANCE is a trusted adviser for organizations committed to building cultures that are safe, equitable, and respectful. RALIANCE offers unparalleled expertise in serving survivors of sexual harassment, misconduct, and abuse which drives our mission to help organizations across sectors create inclusive environments for all. Visit our website or our grant page for more information.