Too often I’m being told, “Take these 4 times a day”, or “Do this twice a day”. If I carry out all of my doctors orders, I wouldn’t have time for family, friends, work and so on. The way I choose to live my life is drastically changing because of new legislation, new technologies and medical advances. I have more life choices than I’ve ever had, since I’ve been injured.
I have a team of 8 doctors or so. There is no doubt that they are fully invested in seeing that I receive the best care possible but I feel as if I’m being forced to choose between a healthy life and a happy one. My care needs and my life choices are constantly vying for my time.
I’m paralyzed from the neck down and I use a ventilator to breathe. I have significant daily care needs. I also own a business, I plan to start law school next year, and would love work part time. I know, this would be a lot for anyone to achieve. I also understand that all of us must decide on how we spend our time. Yet, the time that I have to be productive is shrinking because of the relationship between activity and care management.
The fragility of care
I have an advantage over some people with disabilities because despite being hurt for 20 years, I have good range of motion, muscle tone and skin integrity. A lot of my care needs consist of maintenance or preventative measures. However, when I get sick it’s usually something serious. Therefore, if I neglect my daily care needs I could easily have to spend a month or so in the hospital and another 2 months recovering from the different maladies that I am susceptible to.
So, the time that I spend on maintenance and prevention, allows me to avoid spending large chunks of my life recovering rather than enjoying or achieving.
I also believe that there will be a cure for spinal cord injuries within my lifetime. So, I must also keep my body in good shape for when that day comes. Just washing my hair, my face and brushing my teeth can take 30 minutes. If you add bathing, getting dressed and transferring to my wheelchair, we are easily talking about 2 hours (if I have a nurse that is really familiar with my care). This doesn’t include, stretching, bowel management, tracheotomy suctioning, medications, tracheotomy care, breathing treatments, wearing splints, bladder management etc… all this before I leave the house.
The benefit of technological improvements
Since the advent of newer ventilators and wheelchair technologies, I am more mobile. I’m able to hang the ventilator from the back of my power wheelchair and go just about anywhere I need to. Ventilators have become smaller, less cumbersome and more portable. Having a smaller ventilator also means that I can do other things like transfer from my wheelchair into a vehicle, a boat or airplane. My mobility options drastically increase with these two technologies alone.
Other, technologies allow me to use different electronic devices. On any given day I am on my MacBook, my iPhone, iPad and my Mac Pro. Some days I also use my Windows PC. I also have Linux servers at my home that I control remotely from any of my laptops. I’m actually writing this article with voice dictation software. I can make phone calls on my own. I can, and have written books . I am a novice programmer and I also love to make music. These are just a few things that new technologies allow me to do and I’m always hunting for the next thing that will give me new abilities.
Technology aside, the Affordable Care Act also allows me to buy health insurance despite my “pre-existing condition”. That means if I am able to get a job that offers medical benefits, or pays enough that I can buy my own health insurance, I can enter the workplace just like anyone else.
Let’s face it, I can’t be a mechanic or a jet pilot; yet but there are lots of jobs in this world that I am capable of doing. I see entering the workplace as an inevitability not just a possibility.
I would love to be able to work 30 to 40 hours a week but managing my care seems like it’s becoming the only job that I can work full time. I like to think of myself as a great time manager. I’m able to multitask and deliver acceptable results. While my doctors’ and I guide my care plan and social schedule, my care givers face a conundrum. Most of them take pride in what they do. Some even care for me like a family member. How do they ask me to put my conference call on hold so that I can take medications or do a breathing treatment? Should they? If I’m working on my book, writing an article or a paper for school, how do they ask me to stop because it’s time to do range of motion? Should I stop in the middle of a thought or just as my creativity peaks? How do I tell them no? Should I? All of these questions are important and have crucial consequences.
Giving patients autonomy
We are entering the phase where people with disabilities have more opportunity to make significant contributions in most aspects of life. It is my opinion that we should be expected by our family members, colleagues and each other to make significant contributions to the world. But, we need healthcare management to keep up.
I believe that doctors who care for patients that live at home and are highly active, will be relegated to a supervisory role. What I mean is that patients and caregivers will need the education and tools to quickly make healthcare decisions without having to come to the clinic or call their doctor. I’m not saying that its time to hand over the prescription pad but patients will need some discretion to treat minor, reoccurring issues that could hamper their productivity. For example, if a patient has chronic urinary tract infections, why not allow her to keep a seven day dose of an antibiotic that works for her? This way, she can start treating the UTI while she finds time to send in a specimen for culture, await the results and adjust medications if need be.
Besides, she should know what symptoms her body presents in this situation. I have reoccurring respiratory issues. Usually, the symptoms are the same, the treatments are the same and typically the outcomes are the same. Allowing me to treat these issues would save time and reduce interruptions in my routine. In my opinion, there should be a class of ailments that are treatable by consent and direction of caregivers and patients.
There will be mistakes, misdiagnosis and deaths but these events occur within the strictly controlled system that we currently operate in. I cannot assure you that these occurrences will not become more frequent. Therefore, the crucial component of my proposal is patient and caregiver education. You don’t need an anatomy and physiology course to understand infections. A PRN prescription that can be given within predetermined parameters for chronic conditions should be an option for capable caregivers and patients.
As our activity increase, we will need some degree of autonomy to treat ourselves quickly, to avoid familiar maladies to mature and interrupt production. The traditional course of making an appointment and waiting to be diagnosed and treated by a doctor can mean the difference between surviving, thriving or just existing with a disability.
Thanks to Travar Pettway for this first-hand account of the challenges of care management. Travar graduated from the University of Michigan. He is a project manager, author and public speaker. His passion is helping people with disabilities thrive. Visit Travar’s website for more insight on living with a spinal cord injury.