It's Not in My Chart

On being treated as a person first during hospitalizations

Article Highlights:
  • Hospital stays aren't a piece of cake for anyone, but they can be especially taxing on individuals with neuromuscular disease who have complicated medical histories. 
  • For people who are hospitalized frequently or for long periods of time, the hospital staff can become the center of a patient's social life.
  • The author, who is no stranger to frequent hospital stays each year, explains how she adopted a template — which covers everything about her life that isn't found in a typical medical chart — to help foster more personalized interactions with the medical staff.
by MJ Purk on April 1, 2013 - 9:19am

Quest Vol. 20, No. 2
MJ Purk

Individuals with neuromuscular disorders oftentimes spend a great deal of time in the hospital and even more time interacting with those who work in the medical profession. In their interactions with medical personnel, some individuals are lucky enough to experience more than the expected amount of caring.

However, during medical training, physicians, nurses, therapists and technicians are discouraged from becoming “too attached” to their patients. This is not always a good thing. Some medical personnel distance themselves so far that they can’t relate to others on a personal level, let alone a patient level.

From personal experience, I have found that there are a few ways to combat this. It is difficult to make all individuals feel compassion toward other human beings, but it is easier when, as the patient, you make yourself more accessible to the medical professionals.

There are many ways to open yourself up to questions in a non-threatening manner so that the individuals caring for you can understand your needs. One of the easiest ways is to present your needs to your medical team prior to being hospitalized. The most important information to include is what you want your team to know — be it spiritual considerations that will impact your medical care or a specific way you like to be positioned for treatments. Nothing is too great or too small to mention if it impacts the quality of the care you receive while in the hospital.

It isn’t always possible or practical to have a meeting prior to a hospital stay, especially if it is an emergency situation. Even if it is not an emergency, getting the information across to the people who actually will be caring for you may be difficult. I am not a shy person but when in the hospital I find it difficult to express all of my needs to the right people, repeatedly, throughout the day without getting an attitude of discouragement. The most beneficial way I have found to get my wants and needs across to everyone, from the physicians to the environmental crew, is to write it down beforehand. Yes, it is a daunting task to write down every little thing, but I found a great template to use and change to suit my needs.

“It is Not in My Chart” (see sidebar below) is a template that was given to me by a friend who got it from his hospital and shared it on a social networking website. The template covers everything that would not be in a typical medical chart: things you’re proud of, fears, spirituality, preferences, and anything else that you want the care providers to know.

It took me more than a year to get mine to the point that I felt ready to share it with my team. My way to present it and ensure that everyone has equal access to it is by placing the four pages in clear sheet protectors and taping them to my hospital room door.

I have had two hospitalizations since I have started using the “It’s Not in My Chart” method, now dubbed my “Declaration of Independence” by one of my physicians. This has helped immensely to ensure that doctors, nurses, respiratory therapists, environmental crew and other therapists know what they are getting themselves into by agreeing to be a part of my team.

For people who are hospitalized frequently or for a long period of time, the hospital staff becomes the epicenter of the patient’s social life. Good or bad, right or wrong, you are forced to spend 24 hours a day with these people. Like it or not, you have at least four hours with someone who may or may not know anything about you, your underlying condition or the reason you’re there.

It is a job to many, nothing more, nothing less. They are being paid to make sure you survive their shift. Sometimes the individual will go above and beyond, remembering that you are a person and basically trapped, and treat you with kindness and respect. Some days are spent wishing that those 12 hours would hurry the heck up, while others are spent wishing that the 30-minute breathing treatment could last just a little bit longer. This isn’t to say that any of the medical staff are bad or uncaring. Sometimes people just don’t click.

The opposite of this is also true, at least for me. Many patients, including myself, develop a pseudo friendship with the individuals that care for them while they are in the hospital. It is not that the friendships aren’t real, it is that they are location-specific friendships. Meaning, as one respiratory  therapist I know stated, “We keep the two worlds as separate as possible but it is extremely difficult to do so when you start to share your life with your patient and vice versa.”

These friendships are built out of necessity — for both the patient and the staff. Hospitals are notorious for being cold and sterile places, but they become less so when you find that one respiratory therapist who holds your hand and wipes your tears during the seven attempts to place a PICC line. There is also the physical therapist who paints your fingernails just because she wanted you to look your best before surgery. Or the massage therapist who endures hours of teasing just to see you smile for a few moments. Or the student who reminds you that you are a human, and it is OK to talk about normal age-appropriate things, or the physician who stays all of a Sunday just to ensure everything goes well during the following day’s surgery.

A physician recently said to me, “We are our relationships,” and I believe that is true, no matter the circumstances. Whether pseudo friendships or true friendships, the intent to connect with others can’t be ignored, no matter the physical location. It is important to our survival. Pseudo hospital friendships probably wouldn’t work outside of the hospital and that’s OK. No matter where or how our personal connections are made, they are part of who we are and can make unbearable situations so much more pleasant.

Margaret “MJ” Purk, 25, of Urbana, Ohio, majored in rehabilitation services at Wright State University. MJ has spinal muscular atrophy (SMA). With her friend and longtime caregiver Brenda Hanson, MJ runs Blankets for SMA, which provides handmade “blanket hugs” to children with an SMA diagnosis. Connect with MJ at facebook.com/mj.queen or mj.purk@gmail.com.

When you come into my hospital room, you need to know the facts of my life, that there is information not contained in my hospital chart. My chart is important, for my medical history, but is missing some extremely important information that you need to have, preferably before you come into my hospital room.

Here is some of what you need to know:

  • I am a designer; I design websites, T-shirts and produce videos.
  • I am the president of an organization dedicated to sending blankets to others living with SMA from across the world.
  • I love life, country music, my friends, butterflies, mismatched socks, my Kindle, comedies, helping others, talking, Italian food and shoelaces.
  • I have been a member of the online SMA Community since I was 12 years old and dedicate my free time to “my” kids (other individuals living with SMA).
  • I have limitless amount of memory and, if you take the time to get to know me, I will remember everything you say about yourself.
  • My best friends are people just like me. We have a plethora of abilities and likes, we agree and disagree, and have humor to match our life experiences — ever-changing and impossible to predict.

When you come into my room, you need to know the losses of my life:

  • No, I can’t walk but I can feel everything, hear everything and see everything. My inability to walk does not correlate to my ability to think and feel. I’m almost 25, not 5, so talk to me like you would one of your friends or relatives, not a small child.
  • I lost my mother and sister at very young age. I like talking about them and their impact on my life.
  • Despite being hospitalized numerous times throughout my life, I don’t enjoy being in the hospital. It is a necessary “evil” in my life.
  • I am chronically ill, and am seeking a life that is not just tolerable but enjoyable. I seek a quality of life not necessarily a quantity of days. "I would rather have had 30 seconds of wonderful, than a lifetime of nothing special.”
  • Even though I'm almost 25, I sleep with at least six stuffed animals every night. I like to say they are for positioning purposes, but they are also a great comfort in the hospital when I’m surrounded by unfamiliar objects and people.

When you come into my room, you need to know my body:

  • I know my body. I know what is happening in my body, and I can usually tell you what you want to know. I’m extremely aware of what is happening inside me. I know when something just isn’t right, even before it shows up in my blood or on an X-ray.
  • I’m a night owl. I usually stay up until at least midnight and would sleep until noon if allowed. I don’t generally wake up in the night unless I’m in pain.
  • I have a high tolerance for pain and don’t generally complain about the pain. This does not mean that I don’t experience pain, I just don’t express it.
  • I don’t like the vent being disconnected without warning. Warn me, even in the middle of the night, if you must disconnect me. Think about it; what if someone plugged your nose without warning you?
  • I take more than 10 medications every day. I know what they are supposed to look like and how much should be in each syringe. If it doesn’t look like my medication, I will question you.
  • I hate doctors who confer outside of my room; I worry that they are talking about me in a context they cannot talk about in my presence. I know more about myself than any doctor ever will so talk to me, about me. Nothing about me without me.
  • I live by medication, technology and medical equipment. These things keep me alive. I need these things in order to live, not just a good life but a great life.
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