Hearing the Voices of Older Adults

Elevating Care Preferences to Improve Outcomes and Equity

The Challenge: Are Older Adults’ Preferences Being Heard?

Too often, the voices of older adults are not fully heard when it comes to their health care. This is especially true for people of color, those with limited incomes, and individuals managing complex health needs. When care preferences are overlooked, older adults are more likely to face stressful hospital visits, higher medical costs, and a loss of trust in the healthcare system.

Our research shows that listening to and honoring patient preferences not only improves health and quality of life but also reduces avoidable costs and helps close the gap in health disparities.  Put another way, it pays to listen!

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Key Findings

Quantitative Highlights

1. Ignoring patient preferences led to:

  • Increased odds of above-average inpatient costs (which make up 43% of total Medicare costs)
  • Added $1,189 in two-year Medicare spending per person—equaling $38 billion in excess costs from 2014–2020

2. Older Black and Hispanic adults were significantly less likely to have preferences honored and more likely to receive high-cost, low-value care.

Qualitative Insights

Both providers and older adults agree that:

  1. A collaborative decision-making process which aligns care plans with individuals’ values/preferences is ideal
  2. Health outcomes are more likely to be achieved when providers and older adults work together to produce better health

Research Approach: Mixed Methods, National Scope

This multi-method study sheds light on how honoring care preferences—or failing to—impacts older adults’ health and equity.
It draws on:

Quantitative Analysis (2012–2021)

  • Data Sources: Medicare/Medicaid claims linked to National Health and Aging Trends Study (NHATS) and Health and Retirement Study (HRS).
  • Focus: Relationship between patients feeling listened to and healthcare utilization/cost, and disparities by race, income, and care needs.

Provider Focus Groups (4 focus groups, N=28)

  • Included range of provider types (doctors nurses, physician assistants)
  • Identified barriers to honoring preferences: time constraints, administrative complexity, communication hurdles

Older Adult Focus Groups (4 focus groups, N=29)

  • Included diverse voices of older adults of color
  • Captured direct experiences with the healthcare system and systemic obstacles to being heard

Reports

Older Adults’ Perceptions on Whether and How Care Preferences are Heard, Respected, and Incorporated into Care: A Focus Group Analysis

Read the report  

Providers’ Perspectives on Identifying Ways to Mitigate Obstacles and Improve Opportunities for Assuring Patients’ Care Preferences are Heard and Taken into Account – Focus Group Results

Read the report  

Tracking Progress on Person-Centered Care: What Does It Really Cost Us to Ignore Patient Preferences? Results from Health and Retirement Study

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What Does it Cost To Ignore Patient Preferences: Results from NHATs End-of-Life Claims Analysis

Read the report  

Listening to What Older Adults Want in Their Care

At the LeadingAge LTSS Center @UMass Boston, we study what matters most to older adults. Two foundational reports, supported by The SCAN Foundation, show why taking people’s care preferences into account isn’t optional—it’s essential.

  • Tracking Progress on Person-Centered Care (2021): Found that one in three older adults say their care preferences are rarely or never considered, with even higher rates among people of color and those with low incomes.
  • Why It Matters (2022): Showed that when preferences are ignored, older adults skip preventive care, face worse health outcomes, and drive higher health costs. Having a trusted source of care makes a big difference.

Our research makes clear: a health system that truly listens not only improves lives but also reduces inequities and unnecessary costs.

Person-Centered Care: Why Taking Individuals’ Care Preferences into Account Matters

Read the report  

Tracking Progress on Person-Centered Care for Older Adults: How Are We Doing?

Read the report  

Why It Matters: Advancing Health Equity and Value-Based Care

Respecting care preferences is not only the right thing to do—it’s a smart investment.

  • Promotes preventive care and better outcomes
  • Reduces high-cost, avoidable services like emergency room visits and hospitalizations
  • Narrows disparities across racial, ethnic, and socioeconomic groups
  • Aligns with policy priorities focused on value-based, equitable care

Why It Matters to LeadingAge Members

This research offers actionable insights for long-term services and supports (LTSS) providers:

  • Makes the business case for taking the time to listen to consumers and take account of their care preferences.
  • Centers listening, engagement, and trust in care delivery
  • Provides tools to strengthen patient-provider relationships

Honoring care preferences is not just compassionate care—it is essential for health equity, better health outcomes, and smarter spending. The LeadingAge LTSS Center @UMass Boston invites providers and policymakers to use this research to make care truly responsive to older adults’ voices.

Videos

graphic with text that reads Three Questions with Claire Wickersham
graphic with text that reads Three Questions with Jane Taveres
graphic with text that reads Three Questions with Alheli M. Herrera

Project Team and Partners

This project was conducted by the LeadingAge LTSS Center @UMass Boston, with support from:

Research Team:

The SCAN Foundation

How to Use This Research

  • Train staff in shared decision-making, cultural humility, and communication
  • Redesign workflows to prioritize and document patient preferences
  • Advocate for reforms that ease administrative burdens and support social determinants of health
  • Build continuity of care through stable, trusting provider relationships

Who Should Use This Research

  • Healthcare providers and administrators integrating shared decision-making
  • Policy leaders advancing high-value, equitable models of care
  • Advocates and researchers focused on culturally responsive, person-centered care
  • LTSS and LeadingAge members committed to improving outcomes for diverse older adults