Empowering Your Aging Parent To Be Their Own Healthcare Advocate

Even though today’s healthcare system is more complicated than ever, it doesn’t mean your parent has to settle for less than quality care. But to achieve this, your parent may need to be more proactive with his or her healthcare providers.

As a starting point, they must perceive themselves as a vital member of their healthcare team. Practically speaking, it means your mother or father must prepare for upcoming appointments to get the most from their limited time, learn how to give and ask for specific information and be willing to participate in the decision-making process with their healthcare team.

These steps may be new to your parent and might take some coaching or assistance from you. But if you want them to be more engaged in their healthcare decisions, it is important that you not assume the role of primary advocate for them unless it is clear that they cannot adequately advocate for themselves. Many adult children step in prematurely to “help” their parent without first assessing the parent’s true capabilities.

The goal is to empower your parent to be their own health advocate. That means encouraging them to do all that they are capable of doing. The more engaged they are in their own healthcare decisions, the better self-care they will practice.

Do an assessment

Here are several important questions you can ask yourself to better assess whether your parent needs for you to be his or her health advocate:

• Is your parent expressing a desire for help?
• How would you assess your parent’s health literacy? Is she easily overwhelmed by details about her condition? Does she typically ask pointed questions of healthcare providers to get the necessary information? Is the information she provides accurate and thorough?
• Does your parent exhibit any cognitive difficulties such as memory loss or confusion?
• Does your parent’s health suffer in any measurable way due to a lack of being proactive with healthcare professionals?
• Are there vision or hearing impairments that would make communication with healthcare providers difficult or confusing?

Practical ways to be an advocate

How you answer the above questions will help determine to what degree, if any, you should partner with your parent as their health advocate. Regardless of whether your parent self-advocates or does so with your assistance, there are three practical ways to ensure that your parent gets the quality healthcare he or she deserves.

1. Prepare for the appointment

Getting what you need from your healthcare provider starts before you even show up at the office. A basic plan can help you make the most of your appointment. Here are a few tips to consider:

• Make a list of your concerns. Start a few days before your appointment and write down important symptoms or other concerns. Be thorough and honest in your assessment.
• Prioritize your list. Keep the list to one page if possible and prioritize the issues from most to least important. Plan to mention the most important concerns first.
• Plan to update your doctor. Write down important events that your doctor needs to know about since the last visit. For example, if you have been to the emergency room, seen by a specialist, started taking any new medicines or supplements, had changes in appetite, weight, sleep patterns, or energy levels, be sure to mention these.

2. Give accurate information and ask pointed questions

Once in the office, you must be willing to share information that the doctor needs to know and seek answers to question you need to know.

• Speak up. Make sure you state your key concerns from your list at the start of the visit. This way, if you don’t have enough time to get through all of them, you will have covered the priority points.
• Don’t minimize symptoms. Be honest and forthright about your condition. For example, don’t minimize symptoms by saying “it’s just a little cough” when you have regular coughing spells. This may give the doctor an inaccurate picture of your condition, which could affect the treatment prescribed.
• Ask questions. Don’t hesitate to ask the healthcare provider to explain unfamiliar terms, tests procedures or to repeat instructions that are not clear. Doctors’ recommendations are only as valuable as your understanding of how to put them into practice.
• Listen. Focus on what the doctor is saying. Take notes or record the conversation to help you better remember the information discussed. This is where having a friend or family member along can act as a second set of ears or someone to take notes.

3. Make decisions with your healthcare team

The third important step in getting quality healthcare is being involved in the decision-making process. This means gathering as much information as you can so you can make an educated decision on the treatment that best fits your needs.

• Learn about the treatment options. There is usually more than one treatment available for any condition. Find out what options exist as well as the cost, related risks, side effects and benefits of each.
• Be clear on what the treatment involves. Make sure you understand the extent of what the treatments will and won’t do. You want to be as realistic about the outcome and how this treatment will affect the ongoing quality of your life.
• Consider talking with other family members. Discuss your findings with other family members. This can bring some objectivity to the decision-making process.
• Share lingering concerns with your healthcare team. It’s important that you not be pushed into treatment decisions you are not comfortable with. Share your concerns and explore all alternatives until you find the best option for your situation.

Healthcare advocacy in the 21st century must be viewed as a partnership between the patient and provider. Both need to assume more responsibility for doing their parts if quality healthcare is going to be realized. Older adults need to be more proactive to get what they need and providers need to be more responsive to deliver all that is necessary for quality care.

Meaningful advocacy begins by talking with your parent at length about their needs, capabilities and fears. Considering their views and feelings and involving them in decisions is way to extend respect. And respect is critical for a healthy relationship. The transition from self-advocacy to assisted-advocacy is sometimes difficult, but when approached in a respectful manner can actually enhance the relationship with your parent. A closer relationship will not only bring more harmony between the two of you, but will also strengthen your resolve to advocate for the quality healthcare your parent deserves.