Better Ending | Central MA Partnership to Improve Care at the End of Life


SODIUM (Snapshot Of Dying In an Urban Milieu) STUDY

What was the SODIUM Study?

In 2005, the Better Ending Partnership conducted a study to determine what factors are important to dying patients and how effectively these are achieved by our healthcare community. More than 900 next of kin of the decedents were surveyed to ask them to provide insights into their recently departed loved one’s attitudes about their care.

The purpose was to generate data that would pinpoint deficiencies in existing care delivery for dying patients. Subjects were randomly selected from the 3,045 death certificates for the year 2004 recorded in the Worcester City Clerk’s office. The number of respondents was 373, or a response rate of 41.4 percent.

The survey contained decedent demographic data as well as 27 questions based on the eight domains of dying described in guidelines by the National Consensus Project for Quality Palliative Care. Three to four criteria/questions were designed to describe each domain. Participants were asked to rate the importance of each question to the decedent on a scale of “very, fairly important, not important, and don’t know.” They were also asked to rate how well each of the criteria (always, usually, sometimes, or never) were achieved in the care of their loved ones.

SODIUM Study Findings:

  1. People in Worcester are not dying in the setting of their choice. (10 percent at home, 5 percent in hospice residence, 25 percent in nursing home, and 60 percent in hospital vs. 73 percent who prefer to spend their last days at “home”). The Partnership would like to understand why this is so, and whether this wish can be accommodated to a greater degree.

  2. Hospice services are underutilized – only 22 percent of respondents said their loved ones had hospice care in their final days. (In Massachusetts for 2004, hospice utilization was 27.5 percent.) In the community survey 78 percent of those who said they had heard about hospice said they would want to have it if they had a terminal illness.

  3. Pain management needs improvement – it is unacceptable to have pain well-controlled only 80 percent of the time (for those for whom it is important). Other symptom management needs show similar deficiencies and also need to be addressed.

  4. Having a health care proxy and/or DNR order is associated with greater satisfaction of the care provided and should continue to be encouraged.

  5. Poor communication between health care providers and patients and families is particularly evident in the additional comments made by the survey respondents, and is an overarching problem that needs to be addressed at all levels and venues of care.

With these findings in mind the Partnership turned its attention to how we can improve end-of-life care within our health care institutions. The aim is both to help make the dying process easier for patients and their loved ones and also to support care providers who face everyday concerns and challenges as they provide this care.

Information on this web site was compiled by the former Better Ending Partnership
and is now maintained as a community service by UMass Memorial Health Care.