Let's face it... it's not always easy to navigate today's complex healthcare systems. I was contacted the other day by a daughter who is trying to care for her father, who has severe COPD, by long-distance -- from a whole different country. And she's doing so in an apparently somewhat hostile healthcare environment.
Seems this lady's father is being told at the hospital where he received emergency care for an oxygen level in the 50s that he doesn't need to be on oxygen at home. Now, I'm a nurse, not a doctor, and therefore not officially an expert in treatment decisions. However, I'm very familiar with COPD Treatment Guidelines, and they clearly state that oxygen prolongs life in people with COPD!
So, obviously, this poor daughter needs to do some serious advocating to help her dad get the proper care and treatment for his COPD. In fact, advocacy is one of our most important jobs as caregivers. I've always advocated for my mom in the healthcare system.
My Advocacy Story
In case you haven't already read my caregiving story, I began caring for my mother in late 2007, after a horrendous year of medical problems and hospitalizations. For about a year, she rebounded and was fairly healthy, and then her respiratory status began to deteriorate at quite a fast pace.
I'm a nurse and worked in the home health care field for nearly 20 years. In my years as a nurse, I forged a philosophy focused on the importance of patients and caregivers being active participants in their care and in their health decision-making. I don't believe doctors should wield all the power. After all, it's your body and your health, so shouldn't you be in charge of it?
The unfortunate thing is that people who are now in their 70s and older weren't socialized to think the way I do. To many of them, including my mother, the doctor is considered to be omnipotent and someone you should obey without argument or discussion.
My mom became involved with a doctor when she first moved to Boise, an internist, who seemed to know what he was doing. However, shortly after her diagnosis of COPD, she was hospitalized for an exacerbation and respiratory infection. She recovered after a few days in the hospital, but this seemed to be a signal for the doctor to give up on her.
Upon discharge, he referred her to a local hospice home care organization. My experience with hospice when I worked in home care was that it is for people who have six months or less to live. This doctor swore that was no longer true and it was for people who were chronically ill too.
Shortly thereafter, my mom began to have constantly worsening, severe leg pain. This doctor refused to do anything about it other than throw powerful pain medicine at her. No testing to see what the underlying cause might be, no real treatment. A few weeks later, she had a spontaneous break of her femur. Apparently, that was the cause of the pain, because after it was surgically repaired, no more pain.