Being a Healthcare Advocate for Your Parent
In the fast paced arena of healthcare settings, the soft-spoken, overwhelmed and confused are often passed over and left to fend for themselves. A strong advocate can be the difference between getting better and getting worse.
As your loved one ages, you may find yourself having questions about their diagnoses or conditions. You may also notice that attending doctor appointments with them gives you the tools you need to encourage better habits or choices. Depending on their physical or cognitive needs, your involvement in their medical care can vary from minimal to significant. Here is what you need to know about being a healthcare advocate for your parent.
Why Advocating is Important
Advocating for a senior can look differently depending on their abilities or challenges. In any case, your input or guidance can be the variable that leads to a more accurate diagnosis or treatment plan. You can provide reminders for follow up appointments, as well as help your loved one detect new symptoms or ask questions to assist in gauging pain. As an advocate, you can also inform the physician about any new concerns that your loved one may gloss over or omit altogether. Your input can give a more honest evaluation of routines at home, concerns, or questions.
For a senior who is relatively independent, your involvement in advocacy is more likely to happen outside of the physician office. You can best advocate for, and support, your loved one by being a sounding board for any questions or concerns they may have.
For example, you may help by looking up side effects of a new medication after hearing that your family member mentions that they have been feeling “light-headed” lately. Or, you could encourage more open communication with the physician’s office if you hear about symptoms that are new or concerning.
You can help by pointing out any concerns during your conversations and by suggesting that they talk to their doctor about any issues at their next appointment. Or, you can assist by writing down a list of questions to ask at their next appointment and sending the list along with a notepad and pen for them to write down the answers. You can also encourage honesty, helping your loved one write down symptoms or worries they have been experiencing in the past few months.
Your help can extend past physician visits as well. Seniors can struggle communicating with various members of their healthcare team, including physical or occupational therapists. Be sure they are bringing back instructions for any exercises to practice at home in between sessions.
Finally, for seniors who are mostly independent, your advocacy role includes asking a lot of questions. When you inquire about their health or symptoms or follow up instructions, you are gathering information for yourself as well as giving them something to think about. Asking questions like, “how are you supposed to be feeling by tomorrow” after an emergency room visit can prompt your loved one to look at any discharge paperwork for warning signs to be aware of. Similarly, inquiring about when to schedule a follow up appointment with a specialist can gently remind your loved one to call and get that appointment on their calendar.
Some seniors need a bit more help communicating their needs to physicians or other members of their healthcare team. In these cases, you may find it most beneficial to attend important medical appointments together. This way, you can voice your concerns, as well as your observations, to the physician or therapist. Further, you can get answers to questions your loved one may have but doesn’t ask (due to confusion or embarrassment) and give honest feedback about symptoms you observe.
In these cases, it is wise to head into the appointment with a notebook to write down any information. Forgetting instructions is common at a regularly scheduled appointment, and even more common during crisis situations like an emergency room visit. Have a notebook that is specifically for notes or questions related to your loved one and keep it with you when you attend appointments.
You may also find yourself in a role of coordinating care tasks on behalf of your loved one. This can include setting doctor appointments and scheduling transportation. If you are in a care coordination role, keep yourself organized by adding a separate calendar to your phone that is specifically for your loved one’s appointments. Set reminders to follow up per any instructions, and to keep you on track for setting regular appointments like semiannual dental checkups.
If your loved one is living with Alzheimer’s Disease or another form of dementia, you may find that you need to provide maximum assistance when it comes to healthcare. This situation could also occur if other physical conditions or deterioration warrants your maximum help. In these cases, you are responsible for all healthcare communication, advocacy, and coordination.
In order to be able to make serious healthcare decisions on your loved one’s behalf, you need legal authority to do so. The first step is to become the Power of Attorney for Healthcare. This designation gives you authority to make healthcare decisions for your loved one and gives you the responsibility of assuring their wishes are carried out.
According to the National Institute for Aging, durable Power of Attorney for Healthcare is a legal document that names a proxy. This proxy is given the power to make all healthcare related decisions. Note that this designation does not give you the power for financial decisions; that is a separate designation. If you are named as a Healthcare Power of Attorney, you should be aware of your loved one’s wishes and end of life preferences. Remember, you are to make decisions based on their wishes and not necessarily your own.
Ideally, your loved one will be involved with appointing you their Healthcare Power of Attorney. This designation can be set up during a regular estate planning session with their lawyer, and can include a living will, Do Not Resuscitate (DNR) preferences, as well as other advance directives or end of life planning. The Power of Attorney right does not come into play until the senior is unable to make their own decisions; once that moment arrives, you are able to step in and make the decisions.
If your loved one does have a diagnosis of dementia, it is wise to begin the process of naming a Healthcare Power of Attorney quickly, before further cognitive decline. If there is not a Healthcare Power of Attorney named and the senior cannot make sound decisions, you will need to work with their attorney as well as a guardian to become that point person.
Becoming a Healthcare Power of Attorney also allows you to have access to your loved one’s medical documents. This means you can call the doctor’s office and ask a question about their health or refill a prescription at the pharmacy on behalf of your loved one as well. This is especially helpful during your care coordination efforts.
No matter how much help your loved one needs advocating for their own health decisions, your role is important. Your encouragement and support can give confidence as well as remind them about important facts to convey to their medical professionals.
National Institute on Aging. (15 January 2018). Advance care planning: Healthcare directives. Retrieved from https://www.nia.nih.gov/health/advance-care-planning-healthcare-directives