Thoughts on team work in ALS
Team work in ALS
M. L. Del Bene, MS, RN, NP-P
In my clinical experience in working with ALS patients and their families,
it has become increasingly clear that team work is not only a requirement
for the professional ALS multidisciplinary team members but also that
of the patient and their family. This seems like a simple statement.
Patients frequently share their thoughts on what it is like to be “cared
for” while living with ALS. Care is not limited to only the physical
aspect of day-to-day living but also involves the emotional and spiritual
care patients request and need to flourish. The challenges of living
with ALS are ever evolving and each individual with ALS is presented
with choices that need to be made regularly. Choices that patients make
an impact not only their life and the quality of life but also that of
their families.
The Center’s ALS team approach to decision making for patients
is to provide as much education regarding specific medical and social
issues that arise with ALS as possible. The challenge for the Team is
to first, understand our feelings about such choices, second, to present
unbiased information to the patient and their care team, and third, to
assist them in achieving a thoughtful and comprehensive decision that
continues to meet the needs of the patient, the family and their life
together.
The balance that needs to be either achieved, and/or maintained in this
decision making process is not always easily reached. The underlying
issue of insurance coverage and financial costs not only for medical
care but general family needs are intricate details that need to be incorporated
into the equation and addressed.
|