End-of-Life Care in California: You Don't Always Get What You Want

Dartmouth Atlas of Health Care

Trends in end-of-life care show that not only does the care given vary widely from region to region and hospital to hospital, but also patients often don't get the care they prefer. What can be done?

April 2013


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Californians frequently do not get the kind of care that they want at the end of their lives. This report documents research on end-of-life care for Medicare beneficiaries, and analyzes it in light of what is known about Californians' preferences for care as they approach death. The research found sharp variation that cannot be explained by differences among patients in age, sex, or race.

In general, the overall intensity of the care rose; dying patients in the hospital had many more physician visits on average, and they spent more days in an intensive care unit (ICU). Highlights from the findings include the following:

  • Deaths in hospitals. From 2003 to 2010, the percentage of chronically ill patients dying in hospitals declined in every region in the state. However, the percentage of patients who spent time in the ICU just before they died increased in slightly over half of the regions.
  • Intensity of care. Over the same period, other indicators of the intensity of care increased, including a rise in the average number of ICU days in the last six months of life and the number of physician visits.
  • California vs. nation. Compared to the country as a whole, California had a higher percentage of patients dying in the hospital, more ICU days, and a higher percentage of deaths that included a stay in the ICU.
  • Variation. There were wide variations in end-of-life care from 2003 to 2010 across regions and hospitals. For example, some regions saw rapid increases in the average number of ICU days for patients at the end of life, while others saw no change or significant decreases.
  • Hospice use. The use of hospice care for dying patients increased from 2003 to 2010 across the state and at most hospitals, part of a long-term national trend. During this time span, California added fewer hospice days, adjusted for population, than the nation as a whole.

The report includes maps, figures, and tables depicting end-of-life care by region and by hospital in California.

The complete report is available as a Document Download.

Reader Comments

All too often, written instructions via an Advance Directive are ignored at crunch-time. I know of countless instances where caregivers (family, medical POAs) were ignored by clinical staff who pulled out all the stops on extraordinary measures to "save" someone who would only get hours or days from said measures. Clinicians need as much training on this as patients and family do. Here's a link to a patient thought leader on this issue ...

This is an important report; it's stunning how among both the general public and providers, there are still a lot of misperception about palliative and end-of-life care. Fro more on this topic, the UCSF School of Nursing online publication - Science of Caring - has run a number of pieces that speak to better ways to get people the palliative care they need and deserve.