Patient Hopelessness in the ICU

My family has a long history with the ICU.  My mother first ended up in an ICU in the '80's when she went into pulmonary arrest after a minor surgical procedure. Her children visited her room two at a time, standing next to her bed, a ventilator tube filling her mouth, her eyes panicked, a look that didn't leave until the ventilator was removed.

Luckily my mother didn't experience the ICU again until her death, this time all of us able to visit her coma-laden body at the same time in the ICU after she'd experienced a major stroke. We spoke to the doctors of the damage to her brain, and decided to honor her advance directive and remove her from support. A cart of food and drinks for the family, what I began to refer to as the Death Cart, mysteriously appeared next to the door, and the room filled with the smell of dying.  We were able to help her die peacefully thanks to pain killers, but her children were indelibly marked, grieving her sudden and tragic loss.

Sadly, soon after my mother's death my sister spent time in the ICU, again on a ventilator when she was not able to breathe after a minor surgery. But this time the stay was longer. Let me tell you what happens when a patient has an extended stay in the ICU. My sister was on a ventilator, highly sedated. After a period of time she began to try to pull the tubes from her throat, leading to more sedation and finally physical restraint. This then led finally to a psychotic break - up to 85% of ICU patients will experience ICU psychosis. My sister became more and more panicked, writing notes to us begging us not to let hospital staff kill her, begging us to stay by her side. We obliged. Finally, my sister was taken off the ventilator, but she never really recovered.

Now my turn. Last Thursday night I began to vomit blood.  This gastrointestinal bleed earned me a spot in the ICU, my careful doctor wanting me to be closely observed after stopping the bleed.  I was tethered to monitors and IV poles via an adhesive pulse sock on my right index finger, adhesive leads on various spots on my torso, two IV's, one in each arm, an oxygen calendula in my nostrils, and a blood pressure cuff that inflated so tightly on the hour a bruise was left on my right arm.  I was conscious and lucky to not be on a ventilator. If my blood oxygen level dropped below 90, the monitor would alarm. If the IV bag line was blocked or the bag was empty, the IV would alarm. If the blood pressure cuff didn't fully inflate, the monitor would alarm. If the contact on the pulse sock didn't read, the monitor would alarm. The lights outside the room were never lowered, and the curtain drawn across the glass wall didn't block that light. The multiple monitors and IV displays lit the room.  And each time the alarms sounded, the staff ignored those bells, likely to keep their sanity, leaving me to listen to the constant piercing sound. And when I would press the call button, the staff was often busy with other patients, so I was forced to listen to that sound until finally someone would arrive.  I couldn't sleep. I couldn't relax. I was increasingly anxious. I suddenly understood why my sister lost her mind.

On top of that, while I was in ICU, two other patients in ICU died. Luckily, I was mobile and I'm smart, maybe the kind of patient nurses love to hate. I learned how to disconnect the leads and silence the alarms for a few minutes at a time, so that I could walk down the hall and use the restroom instead of the in-room commode. This meant though that I was seeing the grieving families, the Death Cart, the patient in the process of dying each time I walked out of my room.  I was in ICU with hopes of living, and instead I was reliving my own family's grief memories, and forced to face the fact of my own imminent mortality from Stage IV breast cancer each time I needed to take a bathroom break. And I had to take many bathroom breaks (better than edema).

After a period of time, the doctors and nurses began to tell me I no longer needed to be so closely observed, I could be moved to a regular room. But winter is the time when hospitals are full, thanks to the flu, and no regular rooms were available for my move, so I had to stay in ICU. That meant I had to follow ICU protocol and remain tethered to monitors, calendulas, and IV's, and continue to listen to the constant alarms.  The problem was that I began to feel trapped in this world of alarms, never-off lights, no rest, and death. And with each day I stayed trapped in this world, I lost more and more hope.  A close friend once told me that he knew there was trouble when I began to lose my sense of humor.  After day three in ICU my humor was entirely gone.  The ICU staff was kind, caring, they meant well, but I didn't belong there and the sense of hopelessness was getting worse and worse  Frankly, I've begun to believe that no one belongs in ICU, at least not with the inhumane, alarm-driven, lights up way ICUs are designed now.

Day four I was finally moved to a regular room, but at that point, the damage was already done.  My mood did improve as soon as I left ICU, but an encounter with a cruel nurse on my final day at the hospital dropped me back into the ICU hopelessness.  I came home feeling sad, demoralized, and tearful.  And the problem was worsened by the fact that no one else seemed to understand my experience.  I just wanted to drop into someone's arms and sob. Instead I sobbed by myself and I still can't seem to let this sadness go. Luckily, the hopelessness seems to be morphing into anger, and for that I am grateful.  I'd rather be angry about this horrible experience than to internalize it as a hopeless loss of the will to live.  I am still trying to find a counselor to help me deal with all these feelings, because honestly, how is a stay in an ICU, watching others die, any different than the grief and trauma of a tragic death of a loved one or the death of a classmate at a school?

I personally do not have the energy to fight the world of bad ICU design.  There has been research and solutions proposed to re-humanize the ICU by changing lighting and reducing sound.  I do know I never want to end up in an ICU again. I've added a DNR and instructions to remove any ventilators past hour six to my advance directive.  And, if I end up in an ER again, I will fight like hell to stay out of ICU.  I would rather lie on the floor in an ER than spend any time in another ICU. I just don't think I have the energy to fight the death, alarms and constant light.

R-E-S-P-E-C-T the Patient

After 7 years of living with metastatic breast cancer, I can say that I am now what they call a professional patient.  I have seen most everything, various rules, procedures, protocols cancer centers observe. But past that, I am also a regular human being.  I have a job, a husband, four dogs, two cats, a very active social life, and an extended family. A life.  I juggle that life with multiple doctor appointments, treatments, and diagnostic tests. Sometimes this can be a challenge.  I am lucky in that my previous and current bosses have been very understanding of my need to run to appointments or take time off for medical needs.  (Many cannot say the same.)

Still, managing numerous appointments with work obligations, family, and friends is a challenge. And lately, the challenges have been increasing.  I recently switched oncologists with the goal of working with a doctor who would listen to and respect my goals in treatment. This was a good move. With that move, though, I've had additional appointments so I could be introduced into the new system. Along with this, I've been newly diagnosed with portal hypertension, requiring yet another doctor appointment be added to my roster.

Learning this new system has been demanding at times. There was the run-around of discovering I could not print out the order for my tri-annual echocardiogram from the electronic records system to give to my cardiologist, who is not in the new hospital's system. This took a few hours and several misinforming phone calls, but I finally got it. I now know to ask for a print-out of the order from the doctor as she orders the echocardiogram. Lesson received. Learning the procedures in a new setting takes time. I catch on quickly. I expected this. Par for the course.

Today, though, took the cake. After I left my oncologist's office, I received several emails from the electronic records system indicating appointments were made on my behalf.  I'm not fond of people making appointments without asking me, but in this case they were appointments for infusions scheduled every third Friday at 1:30 pm (a day and time I'd requested ahead of the scheduling). The appointment I did not expect, however, was a visit to the lab for a blood draw at 11:45 am on the day of one of my 1:30 pm infusions, a time almost two hours before the infusion.  Accepting this appointment would mean I would have to use two extra hours of my sick leave, and after I would be stranded at the hospital for at least an hour and a half before the infusion.  I called the cancer center and asked if this appointment could be moved to my 1:30 pm infusion time, since the nurses tend to draw labs from my port. Nope. The scheduler insisted this was the way they did things and if I did not have the draw done at least 45 minutes in advance of the treatment, I would not receive the treatment. She insisted I would have to arrive for the 11:45 am lab appointment or else.

WTF? Show up two hours early for labs? In the past, the nurses drew the blood from the port, and the first results came within 10 minutes. If the basics were good, we went from there.  I expressed this thought and was again met with a wall.  After several minutes, the scheduler blurted she'd have a nurse call me, so I happily hung up and waited for that call instead.  Fifteen minutes later the same scheduler calls back and tells me, it is what it is, but they could move the appointment 10 minutes later to 11:55 am instead of 11:45 am.

When she asked if I could make this time instead, my reply was a simple, "I'll do my best."

Translation for "I'll do my best?"  I'm coming at 12:30 pm.  You said they needed the blood 45 minutes in advance, so I'll give you an extra hour. But I refuse to let you dominate my life by requiring me to waste two hours of my time because you want a two hour cushion.  I have a life and just because I deal with cancer, and will deal with cancer hopefully for years, does not mean I'm giving that life up in order to make you happy.

Frankly, I'm just stubborn enough,that if they refuse me treatment based on my not arriving two hours before the infusion, I'll go ahead and kick it, doing so right in their reception area.  This would be a spectacular advertisement for their cancer clinic.  I'm at the end of my rope with all of these extra appointments and rules that devalue my time.  Don't piss off a cancer patient who's at the end of her rope, because she might take you with her.

These little things, time-eating bureaucracy moments, matter.  I deal every day with a life-threatening disease, but I am still living my life.  Sitting in a hospital for two extra hours just because the scheduler says so chips away at that life.  Do not ask me to show up two hours early just because.  Print out that order for the echocardiogram and hand it to me, instead of forcing me to spend two hours calling multiple people in your organization only to find out I need to come back to the clinic for a hard copy of the order. Do not tell me that the requirement to add people to my HIPAA consent form, allowing loved ones to talk to my doctor about my medical needs, is that those people must come to your hospital in person in order to show their ID to you.  Some of these people live in Wisconsin and Minnesota, not in Washington, DC.  Rules for rules sake are simply a way to suck the life out of people who are already trying very hard to stay alive.

Respect my time. Whether you like it or not, I am paying a great deal of money for your service and for your doctors' and nurses' expertise.  Even if you've come to see yourself as the one with power in this relationship, ultimately, you are not.  I can move my business elsewhere. I can speak to someone higher up about how these crazy, odd rules affect patients.  And most importantly, I can choose to stand stubbornly in front of your desk, making YOUR life difficult, because that's the kind of people I come from.  You may outlive me in this exchange, refusing me treatment due to inane, burdensome rules. But you will be left with my dead body laid out on your desk, a smile of sick satisfaction on my face, and moving that stubborn dead body will be a bitch. I promise.