Doctor as ally or adversary?

Lessons learned about how to communicate with your elderly parent's medical care team

One of the most challenging aspects of my parent care journey has been my relationship with my mother's doctors and other care professionals. Without getting on my soapbox about the healthcare system, it is hard to make sure my mother is getting the care she needs in this time of remote monitoring, tele-health visits, and "patient's first" rights that can tie a caregiver's hands.

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One story to illustrate this point:

My mother has refused to see a doctor for the last 2 years. She is on short list of medications that manage everything from diabetes to her pacemaker to acid reflux. Because the heart doctor was monitoring the pacemaker remotely, the pharmacy, which mails her medication, kept renewing all of the prescriptions for 2 years. The only medical professional we have seen is urgent care which only treats acute issues. I asked a nurse practitioner once to check mom's blood sugar, and she looked at me like I was nuts because we were there for a foot infection. It could have been related, given that mom is diabetic, but the nurse didn't pick that up in the chart. This lack of comprehensive care highlights a significant gap in the system, where the focus is often on immediate problems rather than ongoing health management.

Finally, someone about 3 months ago realized that the prescriptions expired, so they called her to tell her no more prescriptions until she visited the doctor. This forced into the reality that my mother needed to see a doctor, despite her reluctance.  

I'll save you the details, but 8 weeks later, I was finally able to get her to her primary care doctor. I've been sending him periodic communications over the past two years to alert him to the issues with cognitive decline, the outbursts, the hallucinations, etc. He's been her primary for at least 15 years, so he is well aware of her "independent" personality.

This long-standing relationship should have made it easier for us to communicate her needs, but it unfortunately did not.

We get to the visit, and he asks her the standard questions regarding the activities of daily living, i.e., how are you feeling, are you able to cook your own food, etc. She's having a really good day (it's documented that dementia patients in their early to mid-stages are able to pull it together when needed) andanswers everything: She feels great, she is able to take care of herself and live alone, she's not depressed, etc. At no time did he give any recommendations to get her memory tested as a precautionary measure. This oversight was incredibly disheartening, as I had hoped this visit would lead to a more thorough evaluation of her cognitive health.

At the end of the appointment, he said he would see her in a year and renewed all of her medications. I left that office feeling powerless. Here was the one opportunity for a medical professional to send us to the next step in the process, and he punted. It felt like a missed chance to address the underlying issues that were affecting my mother's quality of life.

So it's back to the drawing board. I've continued to research what I should (or shouldn't) have done and am sharing this to help you navigate this as well. It’s essential to be proactive and prepared when dealing with healthcare professionals, especially when it comes to the care of elderly parents.

Understanding Your Role as a Medical Advocate

As family caregivers, we play a crucial role in ensuring our elderly parents receive the best possible care. This often involves becoming their medical advocate, a responsibility that requires us to navigate complex healthcare systems and make important decisions. To be effective advocates, we need to understand the legal considerations, balance autonomy and safety, and build trust with our parents.

Legal considerations

If you haven't already, and there is still opportunity, consider obtaining a medical power of attorney, which allows you to make healthcare decisions on behalf of your parents if they become unable to do so themselves. This document can cover all health-related decisions or be limited in scope, depending on your parents' preferences. Be sure to know what type of POA is in place so you can work with your parent and their lawyer to give you advocate rights before it's too late (trust me, I know). It's also important to have a HIPAA authorization in place, which gives us access to your parents' medical records, enabling you to make more informed decisions about their care.

Balancing autonomy and safety

As advocates, we often face the challenge of balancing our parents' desire for independence with their need for safety. It's crucial to respect their autonomy while ensuring their well-being. This delicate balance requires open communication and a deep understanding of our parents' wishes. Encourage them to make their own healthcare decisions whenever possible, while providing support and guidance when needed. This is not easy — sometimes you see the potential challenges down the road when they can't, but if they are "of sound mind," you have to ride along and let them drive the decision.

Building trust with your parent

Establishing trust is fundamental to our role as medical advocates. We need to have candid conversations with our parents about their wishes and concerns, covering topics from caregiving arrangements to end-of-life decisions. By actively listening and involving them in the decision-makingprocess, we can ensure that their voices are heard and their preferences are respected. This approach not only strengthens our relationship but also empowers our parents to take an active role in their healthcare journey.

How to handle appointments

1. Prepare for Appointments: Before any medical visit, make a list of concerns, symptoms, and questions. This list should include specific observations about your parent's behavior, health changes, and any incidents that may have occurred since the last visit. Having this information readily available can help guide the conversation and ensure that important topics are not overlooked.

2. Involve Your Parent: Encourage your parent to participate in the conversation and encourage the doctor to talk to both of you, not just you. This can help them feel more in control and engaged in their care. However, if cognitive decline is a concern, it may be necessary to take a more active role in the discussion. Be prepared to advocate for their needs, even if they are reluctant to acknowledge them.

3. Communicate Clearly: Use clear and straightforward language when discussing your parent's health with doctors. Avoid medical jargon that may confuse both you and your parent. Be direct about your concerns and the specific outcomes you hope to achieve from the visit.

4. Follow Up: After the appointment, send a follow-up email or letter summarizing the discussion and any agreed- upon next steps. This can serve as a reminder for the doctor and reinforce the importance of addressing your parent's health issues. It also provides a written record of the conversation, which can be helpful for future reference.

5. Seek Second Opinions: If you feel that your concerns are not being taken seriously or that your parent is not receiving adequate care, do not hesitate to seek a second opinion. Different doctors may have varying approaches and insights that could lead to better outcomes. When my mother insisted that she was having heart issues, the first cardiologist dismissed her, telling her she wasn’t that bad off. A second doctor recognized the urgency.

6. Educate Yourself: Stay informed about your parent's medical conditions and treatment options. Knowledge is power, and understanding the specifics of their health can help you advocate more effectively. This includes researching medications, potential side effects, and alternative treatments.

7. Be Persistent: Navigating the healthcare system can be frustrating, but persistence is key. If you feel that your parent is not receiving the care they need, continue to advocate for them. This may involve making multiple appointments, reaching out to different specialists, or even escalating concerns to higher authorities within the healthcare system.

8. Document Everything: Keep a detailed record of all medical appointments, communications, and observations regarding your parent's health. This documentation can be invaluable when discussing care with healthcare professionals and can help track changes over time.

Navigating Challenging Conversations

As family caregivers, we often face difficult conversations with our elderly parents and their doctors. These discussions can be emotionally charged, especially when addressing sensitive topics like memory issues, lifestyle changes, or disagreements about care.

When we notice signs of memory problems in our parents, it's natural to feel concerned. We might worry about early signs of dementia or cognitive decline. To bring up this topic, we can share our observations gently and ask if they've noticed any trouble with daily tasks like paying bills or remembering appointments. It's crucial to remind them that there are treatment options available, which work best when started early. We can suggest visiting their doctor for a cognitive assessment, which is part of the Medicare annual wellness visit. This is what I was hoping my mother’s primary care doctor would have recommended so we could get a baseline assessment and medical treatment as well as, potentially, access to her long term care insurance to provide in-home care and other services.

Conclusion

Navigating conversations with elderly parents' doctors can be a challenging yet crucial aspect of caregiving. The complexities of the healthcare system can often leave us caregivers feeling overwhelmed and frustrated, especially when trying to advocate for their loved ones.By understanding your role as medical advocates, maximizing your time during appointments, and handling difficult discussions, you can ensure your loved ones receive the best possible care.