Back in the 90’s when I was a
hospice volunteer and didn’t know it, I began helping a gay man who had AIDS. I
didn’t know him well, but he had little family support. At that time, people
with AIDS all over the country were dying quickly. I remember that a nurse
taught him a system using pennies to help him keep track of the many
medications he had to take around the clock. With great determination, he relied on that system because he lived alone and knew his life depended on it.
Today, many patients still need more concrete
ways to manage their medications at home safely. Not knowing how to do this may be what
stands between patients’ tranquility and end-of-life pain and distress. When
low-literacy patients leave a healthcare facility with only text directions,
they may misinterpret or be confused by homecare directions they were given.
Visual aides such as pictographs can be literal lifesavers for them. Aides have
proven to be very effective, especially in explaining directions in sequence requiring
multiple actions. Even those with high level reading skills may get confused
about text-only directions.
In a study
assessing family caregivers in managing medications for home hospice patients, survey responses from 98 hospice providers who
were mostly nurses reported 68% rated ensuring proper medication management as
most important in hospice care delivery. But 33% reported frequent encounters
of caregivers with problems managing medications.
To help caregivers manage
medications, three approaches emerged:
1) Teaching them
more about the medication to increase knowledge
2) Simplifying the
management process
3) Counseling to
overcome attitudinal barriers.
As many as 47% of these
hospice providers stated they would benefit greatly from additional resources
to help caregivers.
Frances
Shani Parker, Author
Becoming Dead Right: A Hospice Volunteer
in Urban Nursing Homes is available in paperback and e-book
editions in America and other countries at online and offline booksellers.
