It is hard to believe that it has been over five years since I was first diagnosed with heart issues. During those five years, I swear that I have seen more doctors, had more medical tests and procedures, and been to more hospitals than in the preceding 56 years.
But that five year period of rather intense medical care is something that I am grateful for, because I have crossed paths with some of the most dedicated medical professionals. I have also tried to be the model patient, always implementing the advice given to me to the letter. (Although I do ask a lot of questions – hey, a good patient needs to understand the severity of the condition, and the implications and extent of the treatment!). I have been equally blessed that my health care providers have always been open to hearing and responding to my concerns.
It has also dawned on me that I have observed a number of things over the past five years that could be tweaked. When I worked for the federal government, managers were always seeking 360-degree feedback so that they could improve their services and performance. So in the spirit of assisting my health care providers in developing new and innovative ways to care for the universe of patients, I offer the following customer service suggestions. Much of the commentary could be viewed as tongue-in –cheek, but hopefully the merit or each suggestion will be apparent when the laughter subsides.
Suggestion Number 1: I have described my experience with the treadmill stress test in previous posts. According to the American Heart Association: “The test helps a doctor find out how well your heart handles work.” As your body works harder during the test, it requires more oxygen, so the heart must pump more blood. The test can show if the blood supply is reduced in the arteries that supply the heart. It also helps doctors know the kind and level of exercise appropriate for a patient.”
As you can imagine, this test is important, and every patient wants the test to generate good and complete results. It is also a test where the patient is the center of attention, and looking a bit freaky wearing electrodes and an uncomfortable mask. Needless to say, the test is a stressful event in and of itself. For this reason, I believe that it would help the patient to have something energetic and upbeat to distract from the stress, and to perhaps motivate the patient. Many of us when we exercise use an iPod or other device so we can listen to music. In my case, I am pretty sure that if I there was some rocking music playing, my stress level would decrease and I would knock the results out of the park.
But I have been told that I cannot use an iPod because it important to have an uninterrupted line of communication between the patient and the staff. Noteworthy, in both of the cath labs I was in over the past 8 months, they had some rocking music going on. It sure took my mind off having a catheter cruising the vicinity of my heart to take some pressure readings. So maybe the cardio pulmonary lab folks need to turn on the radio (classical or talk radio stations not allowed) or pipe in some rocking music. I think this would generate peppy background music, while not disrupting the patient/staff line of communication.
Suggestion Number 2: Revise the names of drugs. Like me, I am sure you wonder who came up with the names of the drugs you take. They are so painfully long and unintelligible: carvedilol, lisinopril, bisoprolol, furosemide, spironolactone, and on and on. I don’t know anyone who can pronounce them much less spell them. It’s like naming your kid Hermione or Poindexter. If you want a kid or a drug to fail, just give it a name that is impossible to manage. Even the representatives at my mail order pharmacy struggle to manage some drug names when I call for a refill. Sometimes I’m not sure that the representative and I are even talking about the same drug!
It turns out that there is not just one but there are three possible names for drugs: a brand name, a generic name and a chemical name. None of the names is easy, but it seems that each name gets progressively more complex and bizarre. So I was shocked to find that there is a very detailed FDA process to name the drugs, and companies pay hundreds of thousands of dollars to come up with a name that passes FDA scrutiny. It appears that among the concerns expressed by the FDA is that drug names should not be too similar or the patient might get the wrong drug. But an article about the process of naming drugs on the International Business Times website cited the fact that “even the clearest drug name can still be garbled by a doctor with poor handwriting. Only about half the states require doctors to type up a prescription rather than write it out by hand.”
Seriously? Is it possible that we have tongue twisting drug names because a government agency believes that some doctors have chronically bad handwriting? If so, has it occurred to anyone that this problem is magnified when the person with an illegible scrawl must write out an even longer more bizarre name? As I see it, there are two steps to cure the problem of unintelligible drug names: (1) require the doctors to either pass a penmanship test or type their prescriptions; and (2) have the drug companies develop simple name and number combinations that can be approved by the FDA, for example beta 1, 2, 3 or muscle relaxant 4, 5, 6, etc.
Suggestion Number 3: The labeling/package inserts for drugs should include very precise guidance on the best times for taking drugs. This specific complaint was raised to me by a friend who was told to take her heart drugs twice a day. She said that the prescription bottle said take with breakfast and dinner. She was not having a good reaction to the drugs, which was understandable when the doctor told her she needed to be taking each dose 12 hours apart. Well, in her household, these two meals did not occur twelve hours apart.
And that is the problem with an instruction to take a drug with breakfast and dinner. Depending on who you are and your habits, this could mean various things. For a senior citizen who takes advantage of early bird dinner specials, breakfast may be at 8, but dinner could be at 4:30. What if you do brunch and not breakfast? Do small plates constitute a meal, and if so, which meal? Or what if you prefer to graze with small snacks throughout the day with no real defined meals so that your blood sugar remains constant?
What if you are a workaholic who eats snacks from the vending machines during your marathon work days? For this reason, the drug labels should address how many hours apart drugs should be (like every 12 hours twice a day or every six hours four times a day with food).
Suggestion Number 4: Have better options for the gowns that you wear at hospitals, clinics and doctors’ offices. For years, I have been presented with a plastic bag that contains one gown and typically says “one size fits all.” Trust me, it does not. For a while, I wondered if All was a person, and that maybe they had handed me the wrong package. Maybe I needed to ask for the package that said “one size fits Melanie.” But then I realized this was a cost-saving measure since there would be no way to predict the sizes of the patients in any given day.
But giving everyone the same size doesn’t seem prudent, given that women’s sizes (depending on the vendor) can range from 0 to plus sizes. And sometimes the quality of the mass-made gowns leave something to be desired. I opened one package to find that one of the ties to close the gown was missing. Do not even get me started on the fabric design. I have seen some that makes the patient look like a fugitive from a Dr. Seuss cartoon.
My suggestion is that you offer patients the option of purchasing their own hospital gown to wear to doctor appointments and hospital or clinic procedures. I know. You’re saying that this would not be a hygienic practice which is why the patient is provided with a gown in a hermetically sealed package. Well, I hate to break the news to you, but my body itself does not enter your hospital or clinic or office in a hermetically sealed package! I am sure that my body contains a host of contaminants. Seriously, we can resolve the problem by making sure the patient in advance of the appointment follows whatever instructions you provide regarding the cleaning and care of the gown.
Suggestion number 5: Last but not least, someone needs to come up with a better name for heart failure. After listening to our doctors, and after reading articles on websites such as the American Heart Association, we all know that the heart doesn’t actually fail. If it did, I would be dead and not writing these blog posts. The real problem is that the heart is just not pumping as well as it should be. So maybe call it something like inefficient heart, or insufficient heart, or inadequate heart.
Personally, I think inchoate heart has a nice ring to it. While I learned the term "inchoate" in law school, the word has a practical definition as well. According to the Webster’s Dictionary, inchoate means imperfectly formed. I think that is a good description for a heart that has become weakened or damaged by an underlying disease. Anything has to be better than referring to the patient's heart as a complete and utter failure! If you don't like my suggestions for a better name, maybe the American Heart Association can sponsor a contest to come up with a better name!
Melanie discovered that she had heart failure in 2013. Since that time, she has been learning how to live with the condition, and how to achieve balance and personal growth.