How to Be an Effective Patient Advocate For A Loved One
We know from our conversations with federal employees that many serve as patient advocates for their loved ones during times of accident or illness. This can be a stressful time for both the patient and the advocate. We’ve pulled together some tips to help you more easily navigate the role.
- When possible, it’s best to have the patient sign a Health Insurance Portability and Accountability Act (HIPAA) release naming you as someone their medical professionals can share information with. Many doctors and medical facilities have their own forms, but you might be able to use a general one prepared and notarized for use at different facilities (check with your medical providers in advance). Be sure to keep your own copies too. Making health care decisions on behalf of a patient is different from just receiving information and will require a legal health care proxy or durable medical power of attorney.
- If the patient will be in the hospital or other overnight facility (such as a rehabilitation center), be sure to help them pack items that will support their physical and emotional well-being while they are there. Things like family photos, their toothbrush or favorite hand cream, books and magazines, and the all-important mobile phone charger can help keep their mood up. Check out this list on what to pack from Caring Bridge and this one from US News and World Report.
- While coordination of care is improving with new technologies across medical practices and pharmacies, it’s helpful to keep an up-to-date list of all medications your loved one is taking with dosages noted, as well as all doctors’ names and contact information to make sure all medical providers and pharmacists have the most up-to-date information. Keep copies of the patient’s insurance cards also in case they are needed for doctor’s appointments or filling prescriptions.
- Keeping good notes is an important part of supporting your loved one. Helping track their symptoms, how they are feeling, and being able to describe those accurately can improve diagnosis and treatment. Likewise, preparing your questions for when a medical professional visits or calls can make these conversations more productive for you and your loved one. Take notes on what you learn to refer back to as needed. Medical professionals are often busy treating a number of patients, but it’s ok for you to politely but firmly ask for information to be repeated so you can accurately write it down. Ask for pros and cons of specific treatments if they are not immediately offered, and ask for clarification on timing for when decisions need to be made (while keeping in mind that medicine is not an exact science). Check out these tips from LifeHack on other ways to make the most of a doctor’s visit.
- In a busy hospital setting it’s a good idea to check in with the admission team on a reasonable timeframe for updates. You might ask: “Could I please have an update each afternoon? If I don’t hear anything by 5pm can I call and check in?” If the physician is not available and you need to speak with someone more urgently, check in with the nurse or nursing supervisor for your patient.
- Try to speak with your loved one about their wishes for treatment and procedures in advance, in case they are unable to contribute to those conversations later. This can also help reduce conflict with other loved ones so everyone is clear about the patient’s wishes.
- The COVID-19 pandemic has placed limits on visits to patients in hospitals, nursing homes, and other care facilities, as well as other constraints for patients who are quarantined, which may make following some of the above suggestions more difficult. Check out this article in the Chicago Tribune and this broadcast from Boston Public Radio for additional information.
FEEA is providing financial assistance to federal employees who have leave without pay due to being sick and/or quarantined due to COVID-19, or for those caring for an immediate family member sick with the virus. Learn more at feea.org/coronavirus-help. FEEA is also offering bridge grants to the surviving spouse or child of feds who have passed away due to COVID-19 and to feds who lose a spouse or child due to the virus. Email us at email@example.com for more information.
There is also a regularly updated resource page at feea.org/coronavirus that covers topics specific to feds, as well as things like stress management and educational resources for kids home from school.
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