by Sara Bybee
Has a medical provider asked you about advance directives?
An advance
directive
is a legal document identifying a medical power of attorney and declaring one’s
medical wishes.
Advance
directives are becoming well recognized as important tools for end-of-life
planning through initiatives such as the Conversation
Project.
MORE INFORMATION: For more information on advance care planning, visit the Utah Commission on Aging.
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Our changing world
Roughly 50% of
Americans aged 85 and older have Alzheimer’s disease and globally, the number
of individuals with dementia is expected to rise from 4.7 million in 2015 to
132 million by the year 2050.
Issues with
memory and thinking contribute to the startling fact that approximately 45-70%
of older adults making end-of-life decisions do NOT have the capacity to make
their own treatment decisions.
While having
individuals complete advance directives is important, these changing demographics
have ushered in a new way of thinking about end-of-life choices.
Inability to make decisions
Unfortunately,
the lack of decisional capacity means that medical decisions are left up to a
patient’s health care agent or surrogate.
While this might not sound so bad, consider this:
✦
1/3 of nursing home patients in the final
stages of dementia are given feeding tubes even though it does not extend the
quantity of life and may cause suffering and infection
✦
1/3 of surrogate decision makers experienced
emotional burden lasting months to years when tasked with making treatment
decisions
How can someone with dementia plan for the end-of-life?
Researchers are turning their attention
to advance care planning specifically designed for dementia patients. This
planning ideally needs to be completed before dementia occurs and cognition is
impacted. While a recent New York Times article highlighted an end-of-life document designed specifically
for this population, the instrument put forth has not been empirically tested
or validated.
A new spin
Researchers at the University of Utah are changing this. Based on their prior research on end-of-life care preferences and values, they have developed an end-of-life instrument to capture preferences and values specific to individuals with dementia and their caregivers. In focus groups, this new instrument was highly supported by both patients and caregivers who stated that they wish they had access to the document earlier. The instrument is currently being examined by content experts and once validated, researchers aim to assess its utility in measuring shifting preferences within the context of disease progression.
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