COPD Caregivers Perspectives - Advocating for Your Loved One
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.
At that point, I decided my advocacy had to go further than just attending doctor visits with mom and trying to speak for her and interpret what the doctor said. I told her she HAD to get a new doctor, immediately. That took a few months and she had yet another femur fracture before it happened, but the new doctor was worth the wait.
Unfortunately, that doctor left her practice after a couple more months, and we ended up with yet another goofy doctor. I believe that one may have been impaired at worst. At best, she just wasn't a very good doctor. So I advocated once again for Mom to switch doctors! The one she has now is great, thankfully.
I tell you this long-winded story to help you understand that doctors are just human. They're not infallible and some are better than others. Consider them to be an expert consultant, but always know that you are in charge of your healthcare, not the doctor.
How to Advocate for Your Loved One
Advocacy is not some mysterious process. It is nothing more than standing up for your parent or spouse and helping them make informed decisions. It means questioning the healthcare practitioners you come into contact with and never accepting anything at face value.
It means continually working towards the best quality of life possible for your loved one. It doesn't mean being an obnoxious pest, but it can mean having to learn how to get comfortable with being persistent in your quest.
I admit that advocacy probably comes easier for me, because I am a nurse and have a lot of health knowledge that enables me to pick up on substandard care and understand the language that the doctor is speaking.
But you can learn most of what you need by reading books on COPD and health care, by studying the posts on this site and other reliable health care websites, and by asking questions. A doctor who won't take the time to talk with you about your loved one's health, either during office visits or on a phone consultation, isn't a good doctor, in my opinion.
Don't be apologetic about asking questions or suggesting treatments that you've read about. It is both the right and the responsibility of patients and their caregivers to do so. And it's the doctor's responsibility to work with you. Bedside manner is every bit as important as the ability to provide quality medical care.
And never be afraid to ask for a second opinion from a different medical professional. That is also your right. A respiratory specialist is a good place to start for a second opinion.
A Word of Caution
I've been ranting about the importance of your role as caregiver advocate. But I should step back a moment and also emphasize that you need to keep the lines of communication open with your loved one too.
Be sure they understand that when you advocate for them, it's out of love and a concern that they stay as healthy and happy as possible. It's not that you're trying "to meddle" or take control from them. It's just that you're trying to support them by being their voice, etc.
My mom has welcomed my role as caregiver and advocate. I know that might not be true for every caregiver. But if you talk about it, I'm confident you can reach an understanding. Perhaps your role as advocate will be limited to advising your loved one when they need to take a different or stronger approach with healthcare personnel. Eventually, as their health fails, you may find this changes and you truly do become the advocate.
But whichever way it goes is OK, as long as your loved one gets the care he or she needs and is able to live comfortably for whatever time is left.