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