Q. My father, Rick, has FTD (frontotemporal dementia — the kind that causes him to have behavioral problems such as aggression and lack of respect for the personal space of others) and also suffers from recurring urinary tract infections. On one recent occasion, his UTI was so bad that he was seriously delusional and the hospital doctors thought he might harm himself or others, so they actually tethered him to the bed. I don’t like how certain things were handled at the hospital and want to be an advocate for him. What tips do you recommend to be a successful patient advocate for my dad? Thanks for your help!
A. Talking to doctors and navigating the health care system can be challenging, as you have realized. But as family members and/or caregivers, we want to ensure our loved ones are being treated properly and getting the care that they need.
Advocating on behalf of a loved one involves sharing, expressing yourself, and speaking up for the rights, needs, or wants of a loved one in a healthcare setting. With patient advocacy, you support and promote the interest of your loved one when they may not be able to do so for themselves.
Who Advocates for Patients?
Loved ones and caregivers often feel a responsibility to advocate for patients. Professional advocates are also sometimes hired to look after the well-being of a patient and to ensure that they have access to and receive proper medical treatment. Patient advocacy experts provide the following tips on how to get the help your loved ones need:
- Be an extra set of eyes and ears: Whether you’re a spouse or partner, son or daughter, parent, sibling, or close friend, being an advocate for your loved one going through some sort of medical experience means being willing to be an extra set of eyes and ears and to stand up for that person, if necessary. You help make sure they are receiving the medical attention and care they deserve, and that their voice is being heard. Your role is critical because you may be less afraid to speak up, whereas your loved one may feel embarrassed or worry about upsetting the doctor, or may be unable to speak up for him or herself.
- Be present: You can help loved ones through advocacy by being present when important events happen, such as when a doctor makes rounds or talks with a patient about their diagnosis, treatment, or progress. You can help your loved one ask questions, offer explanations, or ask medical personnel to share more to help him or her understand what’s going on.
- Plan for conversations with health care providers: Plan ahead for conversations with medical staff. Be sure to write down a list of subjects you want to cover, starting with the most important thing first. Be succinct, since providers’ time is often limited. It’s also important to build trust. The doctor should be listening to you, but you should also listen to the doctor.
- Ask questions: An advocate should feel empowered to share their thoughts and questions with medical staff. If you think a test might need to be done, wonder why a certain procedure is necessary, or have worries about medication side effects, for instance, address these concerns with the medical team to get clarity.
- Speak up: If you feel the encounter with the physician isn’t going well, express those concerns. It takes a great deal of courage to speak up in these situations, but often the whole tone of the interaction changes for the better once the doctor or care team is aware that you or your family member doesn’t feel comfortable or has lingering questions. Most likely, they will welcome your constructive feedback and work to address your concerns with you.
- Advocate at home: Caregivers should plan to sit in on telemedicine sessions and physical therapy sessions at home to help communicate the patient’s needs and ask follow-up questions. If the patient lives alone, ask the health care provider to see if teleconferencing you in from another location is an option or use a speakerphone on another line to allow a loved one to participate. If a patient is at home alone, video chat regularly, both for emotional support and so you can see how they’re doing.
- Talk about end-of-life care: Make sure your family knows where your loved one stands when it comes to his or her wishes and where his or her incapacity planning documents are located. Don’t depend on medical professionals to raise this question. Medical teams can better act in accordance with a patient’s wishes if a clear discussion has been had or is documented well in advance of a situation when you need it.
- Make sure paperwork is in order: When your loved one has incapacity planning documents, including an Advance Medical Directive in place, a significant burden is lifted from the decision maker and family who are trying to sort through various treatment options for him or her during an otherwise stressful time. With an Advance Medical Directive in place, health care professionals caring for you can also feel confident that they are following your wishes. Be sure to make an appointment for you and your loved one to complete incapacity planning documents if you haven’t done so already. At the Farr Law Firm, we offer a service called DocuBank to ensure that that the documents you’ve completed will be there when you need them most, such as when you or a loved one are hospitalized.
- If you feel overwhelmed, call for help: For complex situations or if you are unable to fulfill the role, seek out a professional patient advocate. Many companies and individuals provide fee-based patient advocacy for seniors. The services offered and the fees charged of course differ by company, but if you can afford to hire a professional, there are many companies that provide such service. You can search for one at the website of the National Association of Healthcare Advocacy Consultants. The Patient Advocate Foundation also helps patients know that they are not alone when dealing with healthcare needs. The Patient Advocate Foundation can help you locate national and regional resources dedicated to improving access to quality care and decrease the financial burden of medical treatment.
Plan in Advance for Yourself and Your Loved Ones
By being proactive and helping your loves ones plan for long-term care in advance, you can help make sure your loved ones always receive the care they need without worry or financial struggle. You’ll avoid many costly legal headaches that often result when people are not prepared for incapacity or ongoing care needs. It’s never too early or too late to get started. Reach out to us to make an appointment for an initial consultation:
About Evan H Farr, CELA, CAP
