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Becoming a Patient Advocate For Your Aging Parent

Becoming a Patient Advocate also means Health Empowerment

Have you every noticed that we tend to ask a lot of questions when a car dealer tells us that our car has a leak and what needs to be fixed. Many times we will take it to an independent service station for a second opinion, especially because of the cost being higher at the dealership. But when it comes to our aging parents health we do not question the doctor’s diagnosis because of their education or length of practice. According to a 2013 Johns Hopkins investigation, some 80,000 to 160,000 patients suffer permanent injuries every year due to diagnostic error.


Maybe it was because my mom was a retired registered nurse, I trusted that she in her doctor’s qualifications. I quickly learned in the fall of 2013 that was not the case. He miss diagnosed her sudden weakness and hard of breathing with arthritis. The arthritis specialist doctor told her it was her lungs and that her medical doctor should have an x-ray taken of her lungs. The doctor sat on the x-rays for one week and I pleaded with my mom to call him. I could not wait so I took my mom to emergency where the next day she started of in a journey of the unknown. My mother was misdiagnosed twice. First, they said she had pulmonary fibrosis. But my mom never smoked! After 1 1/2 months in intensive care she was recovering and only needed level 2 of oxygen from the initial level of 12 she was at. The diagnosis was suddenly Pneumonia. The rotating pulmonary doctor that week decided to move her to another hospital on the coldest -11 winter day. She was admitted to an independent therapy center within this other hospital. The center refused to give my mom a private room. We argued and one of the Pulmonologist who was from Panama that we connected with from team of pulmonary doctors told us to insist she needs to be in a private room. But this independent center head supervisor refused. They promised that she would be in with a healthy patient that only needed physical therapy. Three days later my mom caught a virus from the very ill patient what was moved in to share her room. The next day my mom was placed in intensive care and given 250 milligram of steroids and then intubated. After three months over the holidays, with God’s help, she could breath on her own with a nose tube at level 10 oxygen and was taken out of ICU. But she was very weak with all her muscles collapsed and would need physical therapy.

I learned not to trust the doctors decisions any longer and question their every move and the hospitals staff as well. She had bed soars from the lack of care and all nurses would do was complain to me that they had 4 patients. After taking her away from this awful hospital to my approved therapy centers she is home but in hospice. The pulmonary doctors gave up on us and said they could do nothing because her lungs are damaged. I researched supplements, other solutions through he pulmonary fibrosis organization. They led me to a pulmonary group of doctors in another city 2 hours away where I provided my criteria for the type of doctor I wanted to see my mom. This pulonary doctor shed light that what my mom was misdiagnosed with Pulmonay Fibrosis that takes place with time not suddenly. My mom has Acute Respiratory Distress Syndrome (ARDS). I researched it and found it hits anyone active at any age, and there is a chance the patient can regain normal health. But they cannot get another virus or it can be detrimental. Intubation most likely caused the scaring of her lungs not ARDS. It has been a 2 year journey but with God’s help I have managed to see my mom slowly recover. If only I had asked questions I could have known there were options like taking her home for therapy when she recovered the first time. At least reserach better qualified place where she would have a private room or insist that the first hospital keep her in a step down unit with out transferring her on the coldest day in history to another hospital.

You need to start becoming your own patient health advocate if you have not yet taken on the courage to research and ask questions. 

6 Tips to be a Patient or your Own Health Advocate

1 _Understand how the health insurance works.
A recent survey from the Kaiser Family Foundation found that more than 4 in 10 respondents don’t understand basic health insurance terms, and even fewer could calculate how much a patient would owe under certain hospitalization circumstances. Knowing how your insurance works helps you navigate the health care system with less chance of ending up with costly, unexpected medical bills.
You have only so many days in the hospital and they you need to be discharged. Ask the hospital social worker (who works for the hospital not the patient) for a list of options and rated rehab centers. Review all recommendations and go evaluate yourself in person if you can.

2. Don’t EVER be afraid to ask questions.
Making a list of questions and concerns before you see the doctor. Though many patients are nervous their questions may disrupt an amicable doctor-patient relationship, she says this isn’t the case. Many doctors tend to forget that there we expect them to still care and many don’t understand that it is common for a Latino family to have aunts, uncles and cousins in meeting with them. Don’t let the doctor say your parent age is the excuse for not being able to so do more. Ask for a Geriatric doctor. We tend to forget that like kids go to a Pediatric doctor the same is for seniors because our internal organs are not the same any more.

3. Obtain Maintain medical records.
Keep your documents in order and to be prepared in case you change doctors or seen a specialist. With the growing prevalence of electronic health records, maintaining your own copies is easier than ever. Make sure that you become officially the patient advocate by getting a notary to come with two witnesses that makes you the medical power of attorney. Have your parent sign the release of medical records to you. You will need this if you decide to move to another doctor or hospital for history of medications and treatments.

4. Review all medical bills for errors.
An estimated 8 in 10 medical bills contain errors – errors that go undetected without the sharp eye of an empowered patient. Medical bills can be difficult to decipher. Ask questions even if they seem “obvious or ridiculous.” Although there is Medicaid and Medicare your parent could have taken out a supplement insurance that can take care of overage medical bills.

5. You ALWAYS have the right to ask for a second opinion.
One in 20 Americans fall victim to outpatient diagnostic errors, according to the Agency for Healthcare Research and Quality. EVEN if you’re comfortable with your doctor’s diagnosis, seeking the input of another physician could save you from unnecessary medical costs and unnecessary stress.
Generally, any recommendations for major non-emergency surgery, any questions about the validity of your diagnosis and any concerns you may have about not being heard are good justifications for a second opinion. Just make sure to check your insurance coverage before you make that additional appointment. Find a organization on that particular issue. Most of these non-profits have great resources and networks that can help you make a decision and find other options if your not satisfied with the Doctors diagnosis or recommended solution.

6. Take advantage of free preventive care under the Affordable Care Act.
With the ACA came access to free preventive care. If you’re insured under an ACA-compliant plan – and if your health insurance began after March 31, 2010 you likely are – you can take advantage of at least 15 free health screenings and services. Additional preventive services are available for women, children and older adults.