What caregivers need to know about health care advocacy

UB researchers have an important message for caregivers: Do not be afraid to advocate for the rights of your loved ones during care transitions.

A recent study by David M. Jacobs, assistant professor, and Amanda A. Foster, postdoctoral associate, both in the Department of Pharmacy Practice, School of Pharmacy and Pharmaceutical Sciences, brought attention to the need for stronger health care advocacy guidelines.

Foster says interviewees in the study, which was funded by the National Heart, Lung, and Blood Institute, shared similar stories about their interactions within the healthcare system at transitions of care.

“What we are seeing so far from this study is that the health care system has large gaps in communication between patients, their caregivers, and health care team during care transitions,” Foster says.

“This may lead to patient and caregiver frustrations, errors in care, and unnecessary hospital readmissions. The knowledge we gain from this study will be crucial in advocating for systemic change in optimizing health care system communication and processes at the legislative and administrative levels.”

Foster and Jacobs aim to increase awareness of this issue in the months to come, and they also seek to empower caregivers to take action. Below, the study research team shares five tips for advocating for your loved one’s rights within the healthcare system:

1. If you see something, say something. Caregivers know their loved ones best. If you notice a new symptom or the person under your care is acting differently, report it to the health care team immediately.

2. Keep addressing questions to the health care team. While it may feel uncomfortable or out of character, keep asking questions to the health care team until you get the answers you need.

3. Document everything. Be sure to document what you are told by each provider, including new diagnoses, changes in medications, and status of health conditions. This can be helpful in advocating for your loved one and ensuring all members of their health care team are on the same page.  

4. Know before you go. Be sure you and your loved one understand all discharge instructions before you leave the hospital. Make sure that a health care team member reviews the instructions with you. Don’t be afraid to ask questions or raise concerns. Ensure all needs are met before you leave the hospital.

5. Be prepared. Have all legal paperwork regarding your loved one’s medical wishes up-to-date and ready to provide at any time during a hospital stay. Also have a list of medications (name, strength, directions, use, prescriber) and a list of their providers (name, address, phone number, reason for seeing the provider).  

Anyone who has questions about health care advocacy can contact Foster at aafoster@buffalo.edu or 716-645-4774.