Economic Value of Caregiving
Rhee et al. (2009) estimated that the value of care provided by families at home in the last year of life ranges between $22,446 and $42,223. However, the National Hospice Study focused only on cancer patients and excluded those with Alzheimer’s disease and other dementias. These illnesses often result in significantly more extended hospital stays, meaning caregiving lasts longer and demands more effort. Kumar et al. (2020) showed that, on average, 2.4 unpaid caregivers support each dementia patient. If the Medicare Hospice Benefit (MHB) had accounted for this reality, the financial cap might well have been higher.
Caregiver Burden and Well-being
The burden on caregivers extends beyond emotional strain. Many report having to take time off work, accept reduced pay, or even lose their jobs altogether (Bijnsdorp et al., 2022). While hospice helps families by offering bereavement support and guiding care, the caregiving role itself can still lead to stress, anxiety, and burnout.
Hospice Benefits and Challenges
Hospice undeniably improves quality of life for patients—managing pain, easing symptoms, and supporting families. However, even with these benefits, caregiving can leave loved ones struggling. Studies point to higher rates of depression and stress among caregivers despite the supports hospice provides (Poltie et al., 2014).
Patient-Centered Care and the Place of Death
Still, I believe in the heart of hospice. Like the 65% of older adults who say they want to die at home, I have seen the comfort it can bring to patients in their final days. Is a home death always ideal, and is a rehospitalization a failure? Not necessarily. However, when we recall the Landmark SUPPORT Study (1995)—which found that 38% of patients spent their last 10 days in the ICU and many died in significant pain—it becomes clear why home remains the better choice for so many. When a crisis does arise, inpatient hospice units or respite care remain essential options (CMS.gov).
Looking Ahead
Moving forward, we need to do more. Employers must provide paid leave so families are not forced to choose between work and care. The Medicare Hospice Benefit cap must also be revisited, particularly to reflect the actual costs of caring for those with dementia and frailty. Moreover, echoing the Hastings Center Report of 1985, caregivers must be ‘committed’—but they should not be left to shoulder this commitment alone.
References
Bijnsdorp, FM,.Van Der Beek , A.J,.Pasman, H. R .W.,Boot, C.R.L.,De Boer, A.H.,Plaiser,I., Onwuteaka-Philipsen,B.D.(2022). Home care for terminally ill patient: the experiences of family caregivers with and without piad work.BMJ Supportive &Palliative Care.https://doi.org/10.1136/bmjspcare-2019-001949.
CMS.gov.n.d.https://www.cms.gov/medicare/payment/fee-for-service-providers/hospice.
Kumar,V,.Ankuda,C.,Aldrigde,M.,Husain,M,.Ornstein,JKA.(2020).Family with caregivers at end of life and hospice use:A National Study of medicare beneficiaries.JAGS.https://doi.org/10.1111/jgs.16648.
Poltie,C,.Burch,K A,.Thomas, SA,.(2014).Informal caregiving of Hospice patients.The Journal of Palliative Medicine.https://10.1089/jpm.2013.0196.
Rhee,Y,.Degenholtz,HB.,Sasso, Anthony T Lo.,Emaanuel ,LL.,(2009).Estimating the quantity and econimic value of family caregiving for community dwelling older persons in the last yera of life.https://doi.org/02390.x
The SUPPORT Principal investigators.(1995).A control trial to help improve care for seriously ill hospitalize patients.JAMA.Volume 274, No.20.