You may be in this position someday. Maybe you already are. Adult daughters and sons often provide a lot of support and we are often present for appointments or involved in conversations with doctors, pharmacists, nurses, and other health care providers.
I have witnessed many tense and conflictual exchanges between adult kids and parents, in particular as parents age and have more medical issues and attend medical appointments. These exchanges often revolve around independence, control and power struggles.
Well-meaning kids often want to support and be effective health advocates for their parents. The parents, in turn, often want the support but still want to have their own say. They don’t want their kids to take over and be controlling.
It can be difficult at times to know when you should step up and become an advocate. Sometimes speaking up and advocating is just what is needed. Other times, you may be overstepping boundaries.
Many of the misunderstandings and kerfuffles could have been prevented with a conversation. That may read as patently obvious. Agreed. And it is remarkable how often these conversations do not take place!
Questions for your parents
Before taking on the role as health advocate, ask your mom or dad if they are:
- Comfortable speaking with their (doctor, nurse, pharmacist, etc.) without your help or support?
- Able to get the information that they wanted or need from health care providers?
- Able to understand the information?
- Willing to ask their health care providers any questions they may have?
- Wanting your support to advocate for them?
Supporting and advocating
Let’s say your parents want you to support and advocate for them. It is still important to keep them as informed and involved as possible. Advocacy isn’t about taking over.
- Discuss your level of involvement in the appointment with your mom or dad prior to the appointment. How much do they want to say themselves? Do they want you to advocate for them throughout the entire appointment or only in relation to certain matters?
- Try and position your mom or dad at the center of the conversation. Encourage them to highlight key emotional issues like what is important to them, what worries them most, and any other stresses.
- Ensure that your mom or dad understands, to the best of his or her abilities, the diagnosis and treatment. It is important that the person gives verbal or signed consent to the care plan or treatment. This should also be done when there are any changes made to any care plan that may be in place. Having an advance care plan is important.
- Have confusing words and terminology clearly explained so that you both understand them. If it will help, request information in writing.
- Ask about a reputable, quality resource (such as a website or information line) to gain more information about the test, condition/illness, and/or treatment.
- It’s a good idea to take notes during medical appointments. These appointments can sometimes stir up a lot of emotions and people can stop taking in what has been said by the health care provider.
- If possible, set aside some time after the appointment to ‘debrief’ with your parents.
Being a health advocate for your parents can be immensely valuable and rewarding. Older parents often feel quite grateful for your support and advocacy. The medical world, can be intimidating and facing their own eventual physical decline can be daunting. Knowing you have their back, as it were, is very reassuring. Knowing you are doing this with respect and compassion is a gift.
Have you and your mom or dad had a conversation about how you can best support and advocate for them? What has been your experience?