I continue to work on the ALS/Hospice Task Force. The task force is a combined effort of the ALS Association (Greater Sacramento and Golden West Chapters) and California Hospice and Palliative Care Association. We are working to create best practices and
education for hospice staff providing care to ALS patients. The task force is
working to assure ALS patients have the appropriate information before entering
and upon receiving hospice care. These best practices will help
hospice team members understand the challenges of ALS and better meet the needs of ALS
patients and their families.
The task force created a survey to gather information from pALS and primary caregivers past or present. Even if you
haven't used hospice, please complete the survey as one of the task force objectives is to better understand the
expectations and perceptions of hospice before it is utilized by pALS. Additionally, I encourage both the pALS and their primary caregiver to complete the survey as sometimes their perspectives are different.
Here is the link to the survey -
I fully understand the demands on your time and appreciate your completion of the survey. Thanks in advance!
