Submitted by Cassie Deacon, MSW Candidate, San Diego State University.
Today’s medical system is a labyrinth of changing policies, procedures and information. Therefore, it is crucial to understand rights and options for yourself and your loved ones. By asking questions, knowing your rights as a patient and as a primary caregiver, individuals can effectively advocate for the best treatment options possible. To empower patients and caregivers, Senate Bill 675 (SB 675) and campaigns such as AARP’s Caregiver Advise, Record, Enable (CARE) Act have achieved a movement, that legislates the inclusion of caregivers in medical decisions in 18 states and this legislation has been introduced in an additional 15 states.
The CARE Act mandates hospitals to involve a designated family caregiver(s) during hospitalization and discharge planning in the hopes that the patient’s overall health will improve and reduce chances of readmissions. Research shows that as many as 40% of patients 65 and older experience medication errors after leaving the hospital and 18% of Medicare patients, discharged from the hospital are readmitted within 30 days . Besides the health consequences to the patients and their families, readmissions cost taxpayers 15 to 20 billion dollars nationally per year.
These concerns were originally highlighted in a 2012 survey completed by AARP that found 46% of caregivers perform medical tasks, such as giving injections, without training or guidance from medical professionals. With proper advocacy and legislation like SB 675 and CARE Act patients and caregivers receive necessary instructions, training and follow-up support to care for their loved ones at home or assist in discharge planning to custodial care or residential care facility, if needed.
It is very important to familiarize yourself regarding patients’ rights within hospitals and options that are available to you and your family members. Below are useful resources to provide additional information on patient advocacy, discharge planning and advocating for yourself as a patient or a caregiver.
Hospital Discharge Planning: A guide for Families and Caregivers- https://www.caregiver.org/hospital-discharge-planning-guide-families-and-caregivers
Caregiver Advise, Record, Enable (CARE) Act: AARP-https://www.youtube.com/watchv=GvxzkQXy_Rg&index=11&list=PLErIJrtiGWSzApcdW0WyMv2oJu2G3JrVB
Webinar: How Managed Long-Term Services Help Family Caregivers: AAPR- http://www.aarp.org/ppi/info-2016/family-caregivers-and-managed-ltss.html
Tips to Multigenerational Approach to Care: Center for Integrated Health Solutions-https://integrationedge.readz.com/tips-to-help-staff-take-a-multi-generational-appro
Advance Health Care Directives-https://oag.ca.gov/sites/all/files/agweb/pdfs/consumers/ProbateCodeAdvancedHealthCareDirectiveForm-fillable.pdf
Alper, E., O’Malley, T. A., Greenwald, J., Aronson, M. D., & Park, L. (2014). Hospital discharge and readmission. Retrieved February, 1, 2015.
AARP. (2015, December 2). New State Law to Help Family Caregivers. Retrieved May 01, 2017, from http://www.aarp.org/politics-society/advocacy/caregiving-advocacy/info-2014/aarp-creates-model-state-bill.html
Gorman, A. (2016, January 06). Hospitals Required To Keep Caregivers In The Loop. Retrieved May 02, 2017, from http://khn.org/news/hospitals-required-to-keep-caregivers-in-the-loop/
Levine, C. (2009). Hospital Discharge Planning: A Guide for Families and Caregivers. Retrieved April 29, 2017, from https://www.caregiver.org/hospital-discharge-planning-guide-families-and-caregivers
- 675, 494 Cong., (2015) (enacted)
Welcome to the Care Redesign Guide. (2017). Retrieved May 1, 2017, from http://www.careredesignguide.org/