Being a Patient is Work:
Those of us who live with a chronic illness or illnesses know it takes plenty of work to maintain our health by making doctors’ appointments, remembering to order our inventory items for TPN, taking our medications, and saving some time for friends and fun. But the truth is, it is far more involved than this for most of us as time passes and history adds complexity to our “cases.”
I learned this recently during a 30-day hospitalization that finally ended on New Year’s Eve when my brain was ready to short circuit. It takes exquisite organization to be prepared for this kind of captivity; I was prepared, and it paid off.
Be sure to have your emergency contacts clearly identified in your cell phone under “ICE” which stands for “in case of emergency”, so emergency personnel can contact them quickly. If you live alone and have a Durable Power of Attorney for Healthcare Decisions, make sure that this person has the proper documents in their possession to present to the hospital to speak on your behalf, to advocate for you, and is clear about your wishes if you are unable to speak for yourself as I was while unconscious. The faster this person can be identified and contacted, the safer you will be as I learned recently. Fortunately, my DPOA was contacted within minutes for decision-making purposes as the ER doctor was orchestrating everything I would need.
If you have pets, make sure the name of your veterinarian and pet sitters are readily available to swing into action to make sure that your pets get the care you would otherwise be providing. Pet sitters need the authorization to take your pets for medical care, which, as it turns out, mine did. One of my cats went into congestive heart failure while I was sick, so for him to spend several days getting treatment, including oxygen in an incubator, his insurance and written authorization to treat him was essential to his survival. Who could have imagined this ill-timed crisis would coincide with my own? Being a kind of geeky, hypervigilant gal, I had imagined this, so he got treatment and lived.
Keep a bag packed at all times to take with you to the ER or for others to bring to you in the hospital. Fill it with everything you know you will want or need that is not going to be provided in the hospital, such as the travel supplies you want to have on hand if your flight is canceled and you have to spend the night in an airport. Make sure it includes some comfortable pajamas or you’re going to end up in the one size fits all hospital fashions that require a wrap-around belt to maintain decency when walking the halls with your nurse. Add lots of socks, panties (or diapers) and other comfort items. It helps to have a couple of books to read, puzzles to do, or your phone if you don’t like spending your time merely sleeping 24-7 once you get to feeling better. Make sure you have your current medication list in this bag as well as a CD or the printed list detailing your medical history, surgeries, and list of doctors who can be contacted if you land in a hospital somewhere other than home. I insist on using my own sterile dressing supplies while in the hospital, so they need to be organized and ready for a friend to grab from your TPN closet or room. And don’t forget your charger for your cell phone.
Once home, or when I am home, I consider the first day of the week to be “medical Monday.” Each Sunday night, I make a coherent list of every follow-up phone call or task I need to make the next day to guarantee I have all my medications, supplies, appointments confirmed or in process and tasks from the previous week done. This sets everything in motion for the remainder of the week. It may take several days to hear back from doctors’ offices on that appointment you want to make, change, or cancel. Allow time for these things to happen. If they or their message says to expect a call back in a certain amount of time, don’t be afraid to call back if you haven’t heard from them by then. If you get a helpful scheduler, ask for his/her name and direct number. This person can make your life a lot easier and less stressful. Finally, have a way to organize all medical phone numbers for quick access either via your cell phone or some other method but, in an emergency, you don’t want to be fumbling to find them.
These are just a few tips for keeping our medical lives organized for daily or emergency purposes. I learned recently during my own medical emergency how much it pays to make this effort.
What is Patient Empowerment?
By Trish Pooley
There are many different models of “patient empowerment” depending upon the origin of the model. Is it a hospital, clinical practice, physician’s organization or patient advocacy organization defining the parameters? Models tend to vary. I am going to adopt a definition provided by the European Patient Forum: Patient empowerment is a process that “helps people gain control over their own lives and increases their capacity to act on issues that they define as important. Developing a sense of personal control over your health is itself empowering. The empowered patient is confident in their ability to manage their condition.” For those of us who are living on TPN, this is critical. The path to patient empowerment often begins when we discover we have no voice in decisions being made or we don’t know how to use our voice to get what we need. We may experience frustration, stress, anxiety, and fear as an acute change in our bodies leads to a diagnosis of chronic illness which is going to radically change how we live. Intestinal failure with a need for TPN qualifies.
The Nutrishare Model:
Many years ago when Nutrishare’s founders, Rod and Tom, decided to create a pharmacy to focus exclusively on IV nutrition therapy, they developed a model that embraces the primary elements of patient empowerment. It starts with information through education because “patients make the best decisions when armed with the right information.” Before I started TPN, one of the Nutrishare PharmD’s contacted me to let me know he would be flying to Los Angeles where I was in the hospital about to start TPN. Richard arrived the next day to begin showing me all the pieces of equipment I would be using. He demonstrated how to do a sterile dressing change and after covering an overwhelming amount of information, he asked what other information I needed to cope best. I only had one question that we hadn’t covered; How do I have sex safely with my partner now that I have a line hanging out of my chest? Richard laughed, but took seriously my concern, and had a ready answer…VYGON tubing…that would eliminate my fears over the length of the line available to me. He then explained how to protect the catheter during intimacy. What a relief!
I was so impressed as a Nutrishare patient because when my kidneys failed and I started dialysis, the education I needed didn’t happen until much later, so my anxiety increased as I watched “things done TO me” without understanding why. Nutrishare made it clear that I would be taking an active role in my care to optimize my quality of life. I felt safe. While access to information is a key driver of patient information, health literacy is defined as “the degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate decisions.” Do you feel confident in your ability to ask questions and get the help you need when you need it? Nutrishare provides this confidence by providing 24/7 access to a PharmD for help in solving problems.
Testing the System!
I can easily recall the first time I had to test this system. It was 3:00 AM when I had a problem with my pump. I called and waited for my PharmD to answer. The first thing he said to me was “Trish, thank you for calling to ask for help. Even though I haven’t talked to you before, I want you to know I have all the information about your health history right here on my computer so let me know how I can help.” I described the problem as I was sweating bullets on my end of the phone, alone in the middle of the night while needing to solve a problem I had never encountered. Ian was very calm, very patient, very clear with his instructions, and 45 minutes later, I was once again infusing my TPN. Before we ended our conversation, Ian remarked “Trish, you made a really good decision to call. This is what we want you to do when there is a problem or you have a question. Thanks for trusting us to help. It was nice to meet you. Don’t hesitate to reach out again.” WOW. He reinforced me for doing exactly what I needed to do but feared to do in the middle of the night.
I contrast this with the last time I needed to call the answering service in my hometown to talk with my PCP who was on-call. She answered the phone with a degree of petulance, along with the question “Just what exactly do you think I can do for you at 11:30 at night?” It had been over three years since I’d made such a call, but I let her know I had just returned from a 12-hour visit to the ER due to intractable diarrhea requiring hours of IV fluids. Despite a white blood count of 24,000, I was not permitted to be examined by a doctor. My request? “Please secure a hospital admission for me to be tested for Clostridium difficile and placed in contact isolation for treatment.” An hour later, she had secured admission. The next day I did receive a diagnosis for C. diff which turned out to be the trigger for my intestinal failure.
Clearly, respect, reciprocity, and collaborative decision-making is key to our health, especially in emergencies. How do we go about building such a relationship? If the anxiety you are experiencing in trying to get answers isn’t being addressed, it needs to be. Stay tuned; I’ll be sharing more concrete ways to go about becoming an empowered patient.