End-of-life care is becoming more patient-directed, new study shows

A new study published in the Annals of the American Thoracic Society suggests an encouraging shift towards greater patient-directed care in the United States. 

Researchers analyzed data from more than 10 million Medicare beneficiaries age 65 and older who were admitted to an intensive care unit (ICU) between 2011 and 2023. They found that over time, more ICU patients were being discharged to hospice — from 5.6% of patients in 2011 up to 6.8% over a decade later.

During that same time period, rates of death in the hospital and within 30 days of ICU admission remained stable, indicating that the rise in hospice referrals was not simply due to more patients dying. 

Instead, hospitals appear to be transitioning more people to comfort-focused care. Increases in do-not-resuscitate (DNR) orders and the use of palliative care during this time also indicate that conversations about goals of care and quality of life are likely happening more often.

Staying in the ICU is one of the most intensive and costly forms of medical care. While it is essential at times, for older adults and those with low chances of recovery, ICU stays can come at the expense of quality of life. As researcher Anica Law, MD, MS, notes, “invasive and prolonged life support can be hard on patients, families, and the health care system.”

Receiving intensive treatment in the hospital also does not align with most people’s wishes for their end-of-life experience. 

When asked about priorities at the end of life, living as long as possible was the lowest on the list. Nearly two-thirds of adults in the United States also expressed a preference for dying at home rather than in a hospital.

This new research suggests that the care people receive in their final months, weeks, and days of life is improving — and increasingly aligning with their wishes and goals. 

While much work remains to continue improving end-of-life care and equity, we’re encouraged by this progress and honored to be part of the shift toward greater patient-directed care.

Findings like these underscore why we work to change culture, policy, and clinical practice at the same time. When both individuals and clinicians are more informed about end-of-life care options and supported in making informed decisions, care is more likely to reflect patient wishes and priorities. 

Through advocacy, litigation, policy change, community education, and engagement with healthcare systems and professionals, we’re working every day to ensure that you are in charge of your care.You can join this growing movement by volunteering, donating, raising your voice in advocacy, attending an upcoming event, and sharing free end-of-life resources with your loved ones.