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.