Have you ever been in a labor and delivery room? It’s the nicest room for patients in the hospital. (At least, for vaginal births – not so much C-sections). Every effort has been made to make it look un-medical. Colors are soothing and less institutional. There are hardwood floors, and scary equipment is discreetly tucked away inside cabinets. Dad has a reasonably comfy chair that unfolds into a bed and can be your side constantly. You certainly aren’t sharing the room with anyone else! You can bring in a “birthing plan,” wherein you make known your priorities, desires, and feelings about how you would like this birth to go. You can bring in a doula who will stay with you and make sure you’re comfortable. She will advocate for you with staff so you can focus on the birthing experience.
Now let’s say, Heaven forbid, something goes wrong at this birth and your child is sent to the NICU. What will you find there? A tangled mass of beeping, buzzing, yelping equipment and cords. Linoleum floors. No serene pictures on the walls. Everybody crowded into one room. Forget fold-out chairs – you often are not allowed to sleep next to your child. You may or may not be permitted to sleep in a room with a bunch of other snoring parents. There is no doula to advocate for you, no one to make sure you’re comfortable and have everything you need. Doctors breeze in, stay for less than five minutes and head out. Curious medical students peer at your baby. Let’s say your baby needs a surgery. What do you think would be the reaction if you tried to have a “surgery plan” that made known all your priorities, desires, and feelings about how that surgery go?
Russell is absolutely right that listening is crucial. I have no doubt that he’s also right that what sends many people to alternative practitioners is that they feel no one cares about them, no one takes their concerns seriously. This is not just pablum that must be fed so a patient won’t whine. I believe it is essential to health, well-being, and recovery. It is extremely frightening to feel is if something is wrong and no one understands how horrible this is for you and no one gives a crap about how you feel. How can you recover if you feel that way? We all know how beneficial the placebo effect alone can be. Experiences can affect your health.
(I wonder whether the medical ethics tenet that medical procedures ought have only a medical benefit – which I find totally ungrounded – helps play a part in what hospitals and doctors view is their obligation to patients.)
I have had the distinct displeasure of being an extremely frequent consumer of medical care for my disabled son. In addition to his primary care doctor, he is followed by eight separate pediatric sub-specialists on an ongoing basis. He has consulted with another five. He’s had seven surgeries since his birth.
Some doctors are absolutely lovely. Others are unpleasant, dismissive, and uncaring. The facilities are absolutely awful. If you ask for something for you or your child’s comfort, you are sometimes accommodated, sometimes huffed at. There are vanishingly few institutional practices in place to make sure people are comfortable, their desires partially accommodated, that they feel as if they are actually cared for. In one case, my son had to stay in a pediatric ICU after a surgery. I was assured I would be able to sleep next to him. I was stuffed into a room with eight other kids and told that there was absolutely no sleeping in there. I asked what would happen if I fell asleep in my chair, and they told me they would wake me up! Showers were on a different floor. (The surgery department has made some steps toward patient/parent comfort.)
It can be really upsetting and lonesome. It is no wonder parents experience PTSD after their child stays in the NICU. I’m not sure if I met the clinical definition of PTSD. But there is absolutely no question that a terrible time was made far worse by the conditions of the NICU and the treatment of all of us. I have to wonder what the effect was on my son to spend his first four months in a room with constant light and noise, woken at all hours, where he could only be held sometimes, where he was woken and pricked with needles at the medical professional’s convenience, etc. etc. I can only imagine that if I were sick and had to be in the hospital for some time the difference between the typical hospital room and staying by myself in a room that looked like a labor and delivery room, which wasn’t shared, where family was welcome to stay and sleep, where advocacy on my behalf was expected, where my concerns about what would happen were taken seriously.
I understand this must be more expensive. How did labor and delivery departments do it? Why is something not at least tried? Are there any lower-cost beginning steps, like stowing equipment in cabinets? Why isn’t the hospital experience a top focus?
I’m guessing many hospital administrators would say nothing can be done about this. Yet the birth experience used to be much more warehouse-like. Until women demanded a different experience. Patients can have some say.
I’m not sure why there has been this excessive focus on the birth experience. I mean, it makes for a more pleasant birth, no doubt. But you know, that’s only a few hours. Why can’t people, why haven’t people demanded similar treatment from any other department of the hospital?