Becoming your parent’s advocate: What you need to know
1. Choose one contact person. Naturally, everyone will want to be kept up to speed on your parent’s health. But it will be easier for everyone if there is one person chosen to serve as the “point” person for your parent’s health.
2. Prepare a contact list. Create a list of all the names and contact information for every doctor your parent meets with, including vision and dental. Keep a copy of the list in the emergency folder in your parent’s home (see #5) and make copies for yourself and family members. Get to know your parent’s doctors, staff, caregivers, and social workers. Many older adults have multiple doctors, so it is good to be aware of the treatment given by each.
3. Create a medication list. A simple table works well, with columns such as the name of the medication, dosage, how to take it, who prescribed it and for what, what it looks like, and other “comments.” The list should be updated after each doctor’s visit. The doctor will ask for a current medication list, and this way, you’ll be prepared. Be sure to bring a copy with you each time you accompany your parent to the doctor (and if s/he is going with someone else, have them bring a copy). This is especially useful if your parent sees multiple doctors—chances are they are not on the same electronic records system, so they may be unaware of what the rest of the team is prescribing. You might even want to take a photo of the list and keep it in your phone for easy reference.
4. Get the right paperwork in place. Your parent should have the following documents in place:
Health Care Proxy (aka Durable Power of Attorney for Health Care), which identifies who will make health care decisions if your parent is unable to do so for him or herself. Your parent may choose anyone for this role—a spouse, child, other relatives, friend, or advisor. If it’s you, be sure to discuss your parent’s wishes and be certain you are willing to carry them out. And make sure your parent has named a successor for this role if the original agent isn’t available.
Living Will (aka Advance Health Care Directive), which specifies what actions should be taken for your parent’s health if s/he is no longer able to make those decisions for him or herself. While this is not a legal document, it clearly spells out your parent’s wishes in case of serious illness. This document is sometimes combined with the Health Care Proxy.
HIPAA Form, which allows your provider (or the hospital) to share information about your current health condition with designated family members. Your parent may need to sign a new HIPAA form for each provider or each visit. This form is necessary even if your parent has given the provider verbal permission to discuss his or her care with you.
Do Not Resuscitate (DNR) Form, a binding legal document that states that if your parent suffers cardiac or respiratory arrest, providers should not attempt to revive him or her. DNR orders must be signed by your parent’s physician and health care proxy.
A DNR does not affect other treatments, such as antibiotics, chemotherapy, etc. And keep in mind that Emergency Medical Services (EMS) will only accept a DNR form, not a living will or Advance Directive. Keep the original in a safe place and have copies available where they can be found easily. (If your parent is a frequent visitor to the hospital, you may want to ask them to keep a copy on file there.)
Keep in mind that each state has its requirements for these documents. You might also want to check out org and www.nia.nih.gov/health/advance-care-planning-healthcare-directives for other resources.
5. Create an emergency file. Grab a brightly colored (red or yellow work well) file folder and label it with large letters “Medical Info” or “EMS” and “TAKE ONE.” Attach it to the main door in and out of your parent’s living space. Fill the file with stapled sets of your parent’s current medication list; a contact list of his or her doctors and their phone numbers, the name of your preferred hospital and your contact information; information about any allergies or sensitivities; and a copy of your parent’s DNR form (if s/he has one). This way, if your parent is taken to the hospital by ambulance (or someone other than you), the team will have the information to start treatment right away. This is also important in this age of COVID-19, as you may not be allowed to accompany your parent into the ER. You may also want to include a photocopy of your parent’s ID and insurance cards, just in case they’re not in a position to grab their wallet.
6. Start a notebook. Find a small notebook (3.5″ x 5.5″ works well) that can fit in your purse or pocket and use it to keep notes on each doctor’s visit. Ideally, note the date, the doctor seen, and the reason for the visit. Then, once the exam begins, note your parent’s vitals (blood pressure, heart rate, O2, weight). Take notes on the doctor’s diagnosis (if there is one) and any tests or medications the doctor prescribes. Be sure you understand why they are recommended, what the doctor hopes they will accomplish, any potential side effects, etc. Be sure also to note any in-office treatments received.
The notebook is also a good place to note any symptoms you noticed (or your parent mentioned to you) before the visit if your parent forgets to bring it up during the appointment. Think about any questions you might have and jot those down—we all tend to forget what we wanted to ask during the stress of a doctor’s appointment! Again, these notes can be beneficial if your parent sees more than one physician. It can help you keep track which doctor was seen, when any diagnoses they might have made, and whether another doctor has already ordered the same tests or procedures. Try to find a notebook with a pocket in the back. This can be a great place to keep provider business cards and appointment cards.
7. Sign up for any portals available. Most health systems, practices, and doctors now have patient portals where you can access test results, track appointments, request refills, and even ask questions. If your parent is computer literate, sign him or her up (and get your parent’s login credentials, if it’s OK with them so that you can stay involved). If the Internet is beyond them or not interested, sign up on their behalf and use the tool regularly. Be aware that you might need to sign up for more than one if your parent’s doctors are affiliated with different hospitals.
8. Accompany your parent into the exam room, if possible. If you can’t go in for the actual exam itself, ask to speak to the doctor before or afterward. You’ll want to learn as much as possible about his or her health, to ask questions you (or your parent has but may forget), and share your observations (sometimes, as an “outsider,” you’ll notice things that your parent doesn’t see or has forgotten).
9. Do your research. You may want to go online to research your parent’s health conditions, so you have an idea of what to watch for and can ask better questions on your parent’s behalf. Make sure you’re visiting trusted, validated sites, such as webmd.com, www.medlineplus.gov, www.mayoclinic.org, and sites dedicated to your parents’ condition (The American Cancer Society, the American Heart Association, American Diabetes Association, etc.), and try to stay away from social media.
10. Remember the caregivers. If your parent is hospitalized or in a rehab facility for any length of time and doesn’t mind the attention, consider keeping a bowl of bite-sized candy in his or her room as a thank you to the staff. They’ll be appreciative of the “pick me up” and will have an additional reason to check in on your parent during the day and evening.
Finally, don’t be afraid to speak up. Health care providers are only human, and many are overwhelmed right now. If you have questions or concerns about your parent’s care, be sure to ask. But don’t be afraid to escalate your concerns if you don’t feel you’re getting the answers you and your parent need.
A closing thought…consider writing a thank you note to your parent’s caregiving team once they recover or if they pass on. Health care providers rarely have their efforts acknowledged, and if your parent has worked with a particular medical professional for years, that relationship should be recognized. And, if your parent has passed, their health care team may not be notified if your parent was at home, in a nursing home, or another facility at the time of death. Remember, they really do care about their patients!