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?
At the hospital where I did most of my NICU rotations, there was a neonatal child life specialist who was always admonishing us to speak more softly, keep lights as dim as possible, etc. We found her exceptionally annoying, often because we seemed to be at cross purposes. Now, of course, I feel guilty about how often I rolled my eyes.
And, because apparently nothing is so compelling as anecdotes from my medical education, the children’s hospital where I did all of my pediatrics rotations in medical school was really good at what you’re describing. By the time I left, they were making all rooms private and sleep-in for parents, everything was in kid-friendly colors and designs, the staff really seemed to take seriously the overall experience of the patients. Sadly, this isn’t consistent with all children’s hospitals. Given where I know your son gets most of his care, I’m disheartened to hear it’s not better with regard to the things you list.
And Lord knows I’ve been appalled at so much of what you’ve told me about what my esteemed colleagues in pediatrics have done and said over time.
The speak-softly-dim-the-lights stuff was done for preemies. Not the non-preemies who wind up in the NICU. His NICU was good on that for preemies.
At the hospital where my kid goes, they are starting to make the rooms private and sleep-in, but very few of them actually are there already. I’ve never managed to score one. Oddly, the elevators are done in very child-friendly designs, but the rooms remain pretty stark.
The surgery unit has made vast improvements. The waiting room for parents is comfortable, with TVs in the main section and a private area for people who want quiet, a computerized board that lists where your child is (OR, recovery room, etc.), a woman who announces to everyone that her sole job is to be their advocate and who takes it seriously, private recovery rooms with lovely nurses.
Hmmm, my impression of hospitals is that they are generally more hotel-like than they are in most other places. Not the NICU, perhaps, but not just L&D.
Wow, this post reeks of entitlement. No-one is forcing you to consume sub-standard health care. If you want boutique health care at a plush ICU, why not pay for it? Try going to one of the Partners hospitals or the Mayo, or better yet, go to the American Hospital in Dubai.
Hi, Anon. Always a treat to have new readers. A few thoughts from me, if you don’t mind?
1) To my reading, what Rose is asking is to be treated rather more like a concerned and loving mother to her disabled child and less like a tedious inconvenience to his medical providers. To you this reads as “entitled.” I am ever so curious what you feel parents and patients actually are entitled to, if not that?
2) I have absolutely no idea what your second sentence is trying to say. That she should be grateful for the sub-standard care her son is receiving? (And, to my reading, she’s not really complaining about the care per se anyhow.) That she should just do without? If there’s a point you’re trying to make, it seems to have gotten lost in your pointlessly nasty tone.
3) Looping back to a point related to 1 supra, I find it curious that you conflate “I should be able to sleep near my sick, hospitalized child,” “My child should be cared for in as compassionate and child-friendly a manner possible” and “I should be able to conveniently attend to my own basic hygiene” with “plush.” One shudders to imagine what you’d consider inadequate or bare-bones. Patients hosed down every couple of days in lieu of a sponge bath?
4) I really, really, really hope you’re not in healthcare. Because here’s the thing — I am in healthcare and I know how pressured it can be. I know all about the demands placed on doctors and nurses and therapists and on and on, and how difficult it can be to deliver patient care in an efficient manner while also trying to treat them like… what’s that word? Oh, yes… humans. It can be surprisingly difficult. So I have some sympathy for the other side of the physician-patient dyad. But what I don’t have any sympathy for is a viewpoint that says patients and their families should shut up and be grateful for what they get. Which seems to me to be what you’re saying. In which case you shouldn’t come within a country mile of any patients who ever do need a compassionate medical provider. (See above re: pointlessly nasty.)
I freely admit I have a sense of entitlement. And I freely admit I don’t have the money for Dubai. The question is whether I have a sense of entitlement that’s unwarranted. I mean, we can all agree that everyone should feel entitled to competent doctors and not everyone should be entitled to hot stone massages and in-hospital pedicures. And what about in between? I do feel entitled to sleep next to my son, to have his comfort and our comfort taken seriously (by comfort, I mean, place to sleep, some privacy, and a shower), and some basic attempts to make the environment more livable. Nothing I suggested is all that high cost.
Moreover, I really, really have a sense of entitlement, because I think that this should not be the province of boutique health care, but available everywhere. People need their families nearby when they are sick. Especially kids of course, but I think everyone could benefit.
Actually, the costs could get very high. Not exactly a Neonatal example, but wards in Government hospitals in Singapore are divided into Class A, B anc C. Class A wards are individual private rooms with showers and everything. Class B are dual rooms and Class C are rooms with 12 beds and a common toilet with curtains to separate. They are priced differently and Class B and C are further subsidised according to some means testing function. Class A wards pretty much cost as much as private care.
Given the general shortage of funds (and other resources including staff) that hospitals seem to face (at least in Singapore, they run on a very tight budget) improving all the class C types of facilities (little privacy, cramped conditions) to Class B or A would price them out of the reach of many lower income families. This would make worse what is already a deeply inequitable situation. (it effectively improves the wellbeing of the better off at the expense of the worst off)
Yes, privacy is the most expensive factor, no doubt. And sadly, it’s a pretty important one.
Why can’t people, why haven’t people demanded similar treatment from any other department of the hospital?
The first thing that comes to mind is Hospice.
So we’ve got the two bookends. I don’t know why they don’t do this for stuff in the middle, though.
That’s true.
When my firstborn was in the NICU at UCSF, we were assigned a social worker/advocate whose job was to make sure we could meet with the relevant doctors and that all our questions got answered. She was excellent at this, and made us feel that someone really did appreciate how frightened and heartsick we were. I’m not sure how we would have gotten along without her.
We got a social worker assigned. She was very friendly the first day, and never stopped by to talk to us again. We asked her one or two questions, she said she didn’t know, and that was it. To be fair, this was a hospital that serves both affluent and very poor populations, and she might have seen her job more to advocate for the poorer people.
some places are better at this than others – newer hospitals, particularly in non-urban areas, tend to be more hotel-like in all aspects. i think we’re going to see this change on all levels of care, even in nicu environments, due to ever-increasing reliance on press ganey scores for performance measurement, bonuses, etc. and the overall effect is generally good, even if it is more expensive to implement.
in urban areas, however, hospitals have limited areas into which they can expand, and real estate is costly. that’s (part of) why even good city hospitals often look years behind the time in terms of cosmetics, even if their equipment and personnel are up-to-date.