# Family Burden and Expenditures in Hospice

> **NIH NIH R01** · ICAHN SCHOOL OF MEDICINE AT MOUNT SINAI · 2021 · $336,818

## Abstract

Site of care in the last phase in life has shifted dramatically in the last two decades from
institutional to community settings. The proportion of decedents dying in the hospital declined
from 51% in 1999 to 37% in 2015 and the proportion of decedents dying at home increased
from 22% in 1999 to 30% in 2015. Caring for those with serious illness in the home setting are
more than 65 million informal caregivers, an estimated 29% of the adult population, who often
experience adverse physical and psychological effects due to their caregiving role.
 Hospices support patients with serious illness and their caregivers through interdisciplinary
care focused on pain and symptom management with the goal of enabling individuals to remain
at home at the end of life. Use of hospice has risen in the past two decades from 10% to almost
50% of decedents concurrent with the rise in home death. Use of hospice is considered to be an
indicator of high quality end-of-life care, and many studies have demonstrated it is cost-saving
to the Medicare program. Yet how hospice impacts the financial burden of serious illness on
patients and families is unknown. Existing studies of hospice enrollment focus exclusively on
formal cost savings to the Medicare program or managed care programs without consideration
of costs to families. It is not known if hospice use shifts economic burden onto families through
higher out-of-pocket spending and informal care costs that may be required to care for patients
at home. Second, although studies demonstrate strong associations between both patient
characteristics (e.g., cancer diagnosis) and hospice characteristics (e.g., for-profit ownership)
and Medicare costs, evidence on equivalent determinants of family spending (out of pocket
costs and informal caregiving) are unknown. Third, our team's prior work has examined
numerous aspects of continuity of hospice care including the impact of transitions after hospice
enrollment (e.g., an emergency department visits, hospital admissions, or hospice
disenrollment) on costs to Medicare. We have not evaluated the impact of transitions on family
out-of-pocket spending or informal care.
 To address these questions, we will create a novel population-based dataset by linking the
1999-2017 Medicare Current Beneficiary Survey, a nationally representative panel survey of
Medicare beneficiaries, to Medicare administrative and cost data and regional characteristics.
Findings from this study will provide the foundation for policy solutions and innovative
interventions to improve outcomes for families whose caregiving is an integral component of
hospice care and an indispensable support to our formal healthcare system.

## Key facts

- **NIH application ID:** 10146860
- **Project number:** 5R01NR018462-03
- **Recipient organization:** ICAHN SCHOOL OF MEDICINE AT MOUNT SINAI
- **Principal Investigator:** MELISSA Diane ALDRIDGE
- **Activity code:** R01 (R01, R21, SBIR, etc.)
- **Funding institute:** NIH
- **Fiscal year:** 2021
- **Award amount:** $336,818
- **Award type:** 5
- **Project period:** 2019-05-16 → 2023-04-30

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/10146860

## Citation

> US National Institutes of Health, RePORTER application 10146860, Family Burden and Expenditures in Hospice (5R01NR018462-03). Retrieved via AI Analytics 2026-06-11 from https://api.ai-analytics.org/grant/nih/10146860. Licensed CC0.

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