Usually I am at the bedside in my profession as a geriatric care manager. In my role, I spend time helping people to understand their needs from a medical, social, emotional and functional perspective. By helping people to understand and participate in their own care, we empower them to be better partners in rehabilitation and recovery.
Even those individuals, who cannot participate in their own recovery due to cognitive challenges, can still had a better quality of life and sometimes take better advantage of services offered to them, when they feel that someone is treating them with dignity and respect. This is proven by improved emotional status, the ability to work with, instead of fight against helpers, and reduced anxiety.
Three years ago due to an accident, I found myself in the bed, enveloped in pain, breathless with anxiety and at the complete mercy of those who are charged with helping me. Like other patients, I found myself relegated to the position of both helplessness and the presumption that I had no idea about what is supposed to happen to diagnose and treat me. This feels terrifying. For someone who is used to running a business, caring for multiple family members and running a home, being this far out of control is equivalent to dehumanization, infantilization, and objectification. This is not health care or “care” of any kind.
I was told, for example, in the X-ray lab that my hand and my shoulder are not supposed to be filmed, along with my hips and spine. I knew this wasn’t right because I had wounds on my shoulder and my hand was already swelling and in a lot of pain. By the time I was sent back to X-ray the shift had changed and the technician who was condescending to me about my concerns was unavailable to be corrected to the fact that sometimes patients aren’t ignorant of their needs, just by virtue of this new role definition. Lesson one: Never expect anyone in the emergency department to listen to you, no matter your prior station in life, because as a “patient” you are relegated to the presumption of complete ignorance.
I remember in the emergency room and later in a regular room, before I was allowed to get out of bed, that I was humiliated by the simple fact of having no clothes on the lower part of my body and the impossibility of having to urinate into a bed pan. All I wanted was to have something with which to cover myself. I tend to be a modest person and being so exposed felt too embarrassing and vulnerable. Lesson two: Always keep a spare pair of pajamas on your person so that if you are ever taken to the emergency room, you will have the ability for modesty and dignity.
Surely in this modern age, with all of our technology, we can come up with a better way to help someone pee than a bedpan or a catheter! If you haven’t tried to use a bed pan, my advice is DON’T. I found it impossible to pee, unless I was in this most uncomfortable and compromising position for at least 25 minutes, all the time with water running in the nearby sink. The nurse who kept threatening me with a catheter was no help. Secondly, no matter how I tried, most of the liquid seemed to end up in my bed rather than in the pan. What was the purpose of the torture, if all of the water was going to end up in the sheets anyway? And how is it that even though the pee ends up in the bed, the staff never has clean sheets at the ready and you end up waiting another 20 minutes for them to find clean sheets, a wash cloth and a new gown, while you do what the bedpan was supposed to prevent…namely sitting in your own pee? Who designs our hospitals and trains their staff? Lesson three: Never pee when you are in a hospital bed. Better to drown in your own juices than be subject to the humiliation of a bed pan digging into your butt and ending up in your own pee anyway.
If you are going to have surgery while in the hospital be prepared that you can’t eat, and you can only drink infinitesimal amounts of liquid, while the anesthesia and pain medications make you so dehydrated that your mouth turns to cotton, so that even speaking is impossible. I guess that is because the staff doesn’t want to hear you complain about needing to have liquid. And even when you get to the point when you can have food or liquid, you can count on them putting it on a bed tray that is half way across the room, so that you can’t reach it no matter how desperate you become. Lesson four: Be sure to wear your water bottle whenever anticipating an accident or other freak reason to be in the hospital. Camels have their humps; patients need their private stash of water bottles under the bed to survive.
Don’t expect to get any rest in the hospital either. Evening rounds end around midnight and morning rounds start at 4. Even if you can get comfortable during those precious hours, expect your roommate to either be a moaner, or to have a relative who stays in the room with you both (defying hospital policy). This person will be up and down all night making certain that s/he gets every one of his/her needs met, despite what is happening with the other patient in the room. Lesson five: If you can’t afford a private room, ask for your room to be changed every night until they get sick of you complaining and put you in a room alone. Alternative to that…bring your white noise machine, eye mask, ear plugs and a lock for your door.
Hospitals make a big deal about patient privacy. Every patient has to sign reams of papers attesting that they understand their sacred right to privacy. Where does the staff sign about respecting patient privacy? I believe they do, but don’t you expect to have any semblance of privacy, from the moment you come into the ER until discharge, there are scores of people who know the most intimate details of your life, your care and your body. Many of these people include your roommate, their family members, the janitor, the meal delivery person, anyone who goes to the nurses’ station to ask a question, the passerby, who peers into the not quite closed curtain when you are trying to pee or getting changed from your adventure with the bedpan. If you think the NSA is nosey, don’t go to a hospital, where privacy, dignity and individuality are concepts that don’t exist. Lesson six: If you ever dreamed of doing a strip tease act, now is the time. If you are more modest, leave your sensibilities at the door.
One surgeon was sent in to see me for a “consultation” prior to surgery. His approach was to show me pictures of a clean incision on someone else’s body. His attempts to reassure me about the success of the surgery was to describe only a minor scar that wouldn’t be an affront to my appearance. He never attempted to reassure me about regaining function or the process of rehabilitation that would be involved. It was all about the aesthetic, not getting back use of my body. His “sales approach” was totally off the mark! I had to insist on a specialist who understood both the surgery and the rehabilitative course of treatment to help me heal and become functional again. (How “nervy” of this patient to ask for options.) Lesson seven: Always carry the list of approved doctors in your health plan so that you are certain to have choices in the matter of your care. Make certain that the list includes all specialists, so that you are prepared for all eventualities!
Most astonishingly, my hospitalist…the doctor who admitted me, presumably followed my care and was responsible for my discharge was GORGEOUS! Unfortunately, his language skills were terrible. He was unaware of my medications, surgeries or how to arrange for a discharge. He never learned my name and I never learned his. Sure, he took my blood pressure (which always rose when I saw his Mediterranean beauty, his bountiful hair and his soulful eyes). But he had never seen me before. Was certain he would never see me again. And so what difference did it make? He was just another person coming in to assault my sense of personhood without a clear function and with no regard for what my needs might had included.
The view from the bed is not a pretty one (despite the handsome doctor who stepped in periodically). We expect miracles from our health system because we are reminded of all of the amazing advances in care that modern technology and research has afforded us. Still, I am grateful that 1) I wasn’t more seriously injured; 2) that I am not permanently disabled; 3) that I had health insurance; and 4) that the hospital was there to care for me.
What I wish I had experienced a little more of was a sense of humanity, compassion, real respect for my person and my privacy. I wish that I had a nurse who seemed to care instead of being inconvenienced by my needs. What we need in health care reform is compassion. I wonder what the cost of THAT would be?