Autonomy & Advocacy: Working with your parent’s doctors to get the care they need

As our parents age, adult children walk a fine line between respecting their autonomy and helping them age well and safely. A loved one is often the first to notice changes in mind, body, or spirit and is usually a catalyst in getting needed care. However, there is a distinct role reversal that takes place in this process. Even as adults, children are accustomed to having the watchful eye of care focused on us, but instead we are turning our attention to the care of a parent. A doctor’s appointment can feel like a microcosm for this delicate balance of privacy and advocacy that adult children face with an aging parent.

R.E.S.P.E.C.T. Find Out What it Means to Me

The wise words of Aretha Franklin remind us of the role that respect plays in crafting eldercare solutions. Each person is going to give and receive respect a little differently. Before beginning any eldercare conversation, don’t be afraid to begin by saying that your goal is to respect them throughout the whole process. There are generally two different levels of respect. Level 1 is to avoid violating a person and having consideration for them. Level 2 is to honor, appreciate, and regard highly. There are many family dynamics at play within every family. While Level 2 respect may not be possible in every situation, it is important to have a Level 1 respect for an aging parent. When preparing to accompany a parent to a doctor’s appointment here are a few pre-visit steps to communicate respect and set you both up for success.

  1. Define Roles: Before you set foot in a waiting room, it is important to have a discussion with your aging parent about the role that they would like you to take in the appointment. By asking their permission you are recognizing their authority and control in the situation.
  2. Offer Choices: By laying out options and offering choices in decisions, you allow your aging parent to remain in the driver’s seat. For example, you may say, “Would you like me to take down your questions you want to ask the doctor and bring that to the appointment?”
  3. Acknowledge the power and skills that your aging parent does have in the situation. Instead of focusing on just what is wrong and ailing with them have a balanced conversation by talking about the ways in which they are equipped and supported to handle the situation well. This confidence can change the tone of a doctor’s visit, which can be a vulnerable experience.   
  4. Debrief Appointments: After the appointment take time to talk about how it went with your parent. Ask how they felt it went and if they were comfortable with the role that you played. If the appointment didn’t go well, owning the impact of your actions and words can deescalate a potentially tense situation. For example you might say, “I’m sorry that happened. I didn’t mean to embarrass you”, or “I’m sorry, I didn’t mean to make you feel like a child”, or “I’m sorry. I know this is hard.”  

10 Tips for Working with Your Parent’s Doctor

  1. The List: One of the biggest concerns that adult children face is that an aging parent will forget or avoid a specific topic because of the fear behind it. Making a list of topics in advance outside the pressure of the office can be helpful. Ask your parent what their biggest concerns are and what their priorities are. Having listened to their concerns, you can then tactfully bring up your concerns and ask to add them to the list.
  2. Get it In Writing: Ask the doctor for any new instructions in writing to refer back to later. Many appointments go quickly and are chalked full of information. Just being a recorder of the information is a huge help.   
  3. Medication List: Take a current medication list and update it to reflect changes made in the appointment. Include dosages and other instructions. Don’t be afraid to ask questions about medications, what they are for and if dosages need to be addressed.   
  4. Best Contact: Ask the doctor who you should contact if concerns or questions arise after the appointment.
  5. Side Effects:  If there is a particular concern or a new medication, be sure to ask what specific changes or symptoms to watch for. 
  6. Go with the Flow: During the appointment you may need to take different roles and shift between listener/recorder and advocate. If there is a topic that is confusing or even conflicting with what your parent wants, don’t be afraid to ask for more information about the topic. Asking follow-up questions and becoming more educated can be a safe fallback position on touchy subjects.
  7. Prevention: Medicine tends to be reactionary, but it is important to help your aging parent to still think of prevention. Ask the doctor if there are lifestyle changes that would benefit your parent’s specific condition or overall health.
  8. Make Future Appointments: Before leaving the office be sure to make and document necessary follow-up appointments or make appointments with referred specialists. This will give plenty of lead time to work around both of your schedules.
  9. Anticipate & Ask: Address potentially vulnerable moments in the appointment. For example, you might ask if there is an examination if your parent would like you to leave the room or stay. If there is a topic that is particularly embarrassing such as incontinence or dementia, ask your parent what situation would give them the most dignity and make them feel the most comfortable while having the difficult conversation.
  10. Be an Ally, Not an Opponent: By working with a parent, opening the dialogue, and listening, you can become their ally and not an opponent. When there is a tense dynamic between an adult child and parent, it can put a strain on the doctor-patient relationship and the trust that is being built. Especially when there is a dynamic of three individuals in the room, try and communicate to your parent that you are their ally in the situation.

 

Published on February 24, 2014.