Lack of Caregiver Support Adversely Impacts Hospice Utilization

A lack of sufficient family caregiver support can have a negative impact on whether or not a patient receives hospice care. New research shows that patients who are faced with end-of-life decisions may be less likely to choose hospice unless they have a network of friends or family who can serve as home caregivers.

The study examined the records of more than 1,800 Medicare decedents who had a primary diagnosis of dementia or cancer using data from the National Health and Aging Trends Study from the years between 2011 and 2017. The trends study data is linked to Medicare claims.

“We know that patients who have more intense care needs often have larger networks of caregivers giving care to them and also receive more hours of care,” Vedika Kumar, medical doctor candidate at Ichan School of Medicine at Mt. Sinai in New York and lead author of the study. “The relationship can go in a number of directions. For example, some patients who have larger care networks may have more involved family members who might facilitate enrollment in hospice. Some qualitative papers in the past have found that decision making, especially in the end of life, often involves more than one decision maker and sometimes up to three people who, all in concert with a doctor, make the decision to transition a patient into hospice.”


Hospice utilization in the United States topped 50% among Medicare decedents during 2018, according to the U.S. Centers for Disease Control & Prevention. Cancer is the most frequent diagnosis among hospice patients, though many patients have multiple comorbidities. In 2017, more than 30% of hospice patients were diagnosed with cancer.

Dementia was the third-highest diagnosis, representing 15.6% of Medicare decedents who received hospice during 2017.

The researchers in the Mt. Sinai study concluded that family caregiver network size was positively associated with hospice utilization among the cancer population. Patients who had cancer who had more family support in terms of number of unpaid caregivers, were more likely to enter hospice care, Kumar told Hospice News. Cancer patients who have less family support in terms of hours or numbers of caregivers are less likely to enter hospice.


The Medicare Hospice Benefit does allow for some home health aide services for patients who have less family support in the home. However, Kumar said, the median length of time per week that aides spend with patients is 80 minutes, which is insufficient to meet the needs of many seriously ill patients.

“Perhaps we need to think about expanding this access to home health aides for people who don’t have family support, because as we found in this study, especially in our dementia subpopulation, patients often required almost 40 hours of unpaid care a week, which is roughly a full time job,” Kumar told Hospice News.

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