Do You Have an Advocate to Speak on Your Behalf?

Q. My sister, Penny, has advanced Parkinson’s and is beginning to experience symptoms of dementia. She’s been in the hospital several times over the past year for aspiration pneumonia, falls, and urinary tract infections. Although she still seems to have her wits about her most of the time, she is sometimes disoriented and it is unclear whether she can make decisions about her care. Even if she could, it is often hard to understand her speech, due to her Parkinson’s. I visit her and advocate for her often to ensure she is receiving the care she needs, but my husband and I live 1,000 miles away and due to my own caregiving duties, I can’t come every time she is hospitalized. I do want to make sure she is cared for and advocated for when I can’t be around to help. What do you suggest for someone in Penny’s situation and others who may need an advocate to speak on their behalf?

A.Having a patient advocate for yourself or a loved one is important for every patient, no matter their age, and it sounds like it could be helpful for your sister. According to Nancy Brook, a faculty member at the University of California San Francisco, “Our health care system isn’t perfect and having a patient advocate is important to get the proper care.”

Senior care advocates assist seniors and their families with concerns regarding matters of health, housing, and other issues of aging. Whether a professional or a family member becomes an advocate, the goal is to keep the best interests of the elderly person in clear focus. Senior care advocates can be family members or professionals.

Family Members as Senior Advocates

It is not unusual for someone in the family to act as an advocate for an older family member. Often a parent, grandparent, or other older loved one becomes too ill to manage things on his own. When a family member steps in and takes over the care of the senior, he is acting as the care advocate for his loved one.

The responsibility of acting as the care advocate for a senior family member is far greater than simply taking him to a doctor’s appointment or picking up a filled prescription from the pharmacy. The role of the care advocate entails making sure that everything regarding the senior’s medical care is taken care of correctly. Some of the responsibilities typically include:

  • Everything regarding insurance, Medicare, and supplemental secondary insurance coverage, limitations, and benefits, including challenging incorrect/excessive charges or double billing;
  • Attending and taking notes at doctor visits, tests, and procedures;
  • Advocating for 2nd opinions when appropriate.
  • Helping explore “alternative” one integrative treatment options such as chiropratic care, accupuncture, herbal medicine, and energy healing such as Reiki.
  • Making sure prescriptions and supplements are taken correctly and that doctors are checking for possible adverse interactions; and
  • Making sure that all information is correct if a hospital visit occurs.

For the family member that takes on the responsibility of acting as the loved one’s care advocate, the job can be exhausting, especially if he or she is caught in the sandwich generation (taking care of a child and an aging parent or relative at the same time). If the responsibility of being a caregiver or advocate becomes overwhelming, sharing the responsibilities with another family member or engaging the services of a professional care advocate for seniors is often the best solution for everyone. It is also generally the best solution when close family members do not live near the senior who needs assistance, similar to your situation.

Professional Senior Care Advocates

Many companies and individuals provide fee-based patient advocacy for seniors. The services they offer differ based on the specific company, and costs vary based on the individual company. Nancy Brook suggests that 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 services provided by a professional senior care advocacy company may include:

  • Assistance with medical care and concerns;
  • A complete assessment with care recommendations (usually completed in the senior’s home);
  • The completion of a plan of care;
  • Assistance finding appropriate housing and help with the transition to the new living environment such as an assisted living facility or Alzheimer’s care facility;
  • Reviewing all bills from medical professionals, hospitals, and insurance companies for accuracy;
  • Identifying needed community services such as Meals on Wheels, adult daycare, wheelchair transportation services, and assisting the senior in securing them;
  • Providing information when needed.

If the senior is placed in a care facility, advocates may continue to act as a liaison for families that live out of the area by keeping them informed as they continue to monitor the senior’s care and handle the coordination of additional services that may become necessary. They may oversee any services needed such as homecare, private duty nursing, or hospice. If the senior remains living at home, the advocate makes home visits to make sure the senior is safe and well.

Patient Advocate Foundation in Virginia 

For those seeking an outside source as a patient advocate, the Patient Advocate Foundation 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.

The Patient Advocate Foundation is a national 501 (c)(3) non-profit charity that provides direct services to patients with chronic, life threatening and debilitating diseases to help access care and treatment recommended by their doctor. Using their website, you can access a list of the potential organizations that may have programs to address your needs and select the searching criteria that is the best match as it relates to the patient.

Advocacy Resources

For information on becoming an advocate for your parents or another loved one, view Becoming Your Parent’s Advocate from the National Pain Foundation. 

Other advocacy resources include: 

What if You’re Advocating for Yourself? 

If you don’t hire an advocate, Nancy Brook had the following suggestions for advocating for yourself:

  • Be prepared: Write down your questions for the doctor and most importantly, do not let the doctor rush you. If you have a lot of questions, ask for more time or make another appointment.
  • Do your research: Your doctor may say you need to get into treatment right away, but give yourself time to do your research or have a family member help you determine the best treatment and/or clinical trial before rushing into things.
  • Take notes: Ask the doctor if he or she minds if you record what they say. “Most doctors will not mind and if they do, this probably isn’t the right doctor for you,” said Brook.
  • Take someone with you, even if you’re acting as your own advocate: A second set of ears will also help you hear things you might not have heard before.

As healthcare becomes more and more complex and seniors live longer and longer, senior advocates become critical members of the senior’s support network. For recommendations of patient advocates and other senior-serving professionals, please see our trusted referrals. values-based patient advocates as one local company that we prefer many clients to: https://www.valuesbasedpa.com/ is one local company

When More Help is Needed

What happens when your loved one needs more help than an advocate can provide? 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 a no-cost consultation:

Fairfax Elder Law: 703-691-1888
Fredericksburg Elder Law: 540-479-1435
Rockville Elder Law: 301-519-8041
DC Elder Law: 202-587-2797

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