PE R S PE C T IV E Designing an Independent Public Health Agency

We believe that, all together, solved with expert judgment alone. etary policy, we believe it de-
these features will help to ensure Some public health questions de- serves independent public health
that a public health agency has pend on weighing liberty inter- institutions.
the independence necessary to ests against probable health out- Disclosure forms provided by the authors
exert its expertise during the comes and are therefore as much are available at NEJM.org.

next crisis. Even independent about considering community val- From Harvard Law School, Cambridge
agencies can be undermined by ues and priorities as they are (J.S.), and the Boston University School of
Law, Boston (C.R.) — both in Massachu‑
politics, however. For example, about settling scientific questions. setts.
the Federal Election Commission For this reason, it may make
This article was published on May 1, 2021,
was recently hamstrung for sense to keep the ambit of the at NEJM.org.
months, unable to conduct inves- agency narrow and focused on
tigations or impose penalties for epistemic matters, such as on re- 1. Califf RM, Hamburg M, Henney JE, et al.
Seven former FDA commissioners: the FDA
lack of a quorum. If a president porting public health statistics should be an independent federal agency.
(or a Senate majority) is hostile and summarizing scientific knowl- Health Aff (Millwood) 2019;​38:​84-6.
to an agency, it can undercut the edge to provide guidance to policy- 2. Darrough C, Adib D. Health experts on
Covid-19 vaccine: Americans have ‘a lot of
agency by denying it the con- makers. distrust.’ ABC News. December 4, 2020
firmed nominees necessary for a The pandemic has revealed the (https://abcnews​.­go​.­com/​­Health/​­health​
quorum. importance of having trustwor- -­e xperts​-­covid​-­19​-­vaccine​-­a mericans​-­lot​
-­distrust/​­story?id=74519119).
Moreover, “independent” can thy and competent institutions to 3. Humphrey’s Executor v. United States,
be merely a euphemism used to protect public health. The Con- 295 U.S. 602. (1935).
denote agencies that lack politi- stitution also permits the creation 4. Seila Law LLC v. Consumer Financial
Protection Bureau, 591 U.S. ___ (2020).
cal accountability and respon- of long-standing, stable institu- 5. Gravelle JG, Lowry S. Federal proposals
siveness to public interests. The tions that serve the public inter- to tax marijuana: an economic analysis.
Fed has been criticized for set- est outside the political branches. Washington, DC:​Congressional Research
Service. November 13, 2014 (https://fas​.­org/​
ting policies that serve capitalists Just as the United States has in- ­sgp/​­crs/​­misc/​­R43785​.­pdf).
more than working-class people. dependent commissions in other DOI: 10.1056/NEJMp2033970
Many policy issues can’t be re- important domains such as mon- Copyright © 2021 Massachusetts Medical Society.
Designing an Independent Public Health Agency

Losing Touch

Losing Touch
Ken Wu, M.B., B.S.​​

W e called it the “cold light.”

It looked like a small blue
button with a power cord at-
an incubator. She had been born
at 24 weeks of gestation, weigh-
ing just over one pound. She
sion, we needed access to her
veins.
We switched the light on again
tached to the end of it. At its was so small that I could see and placed it under one of her
center was a single round eye all of her in a single gaze. Her arms for another look. The ane-
that emitted a light, crimson in body was smaller than my hand, mic limb transformed into a
color and piercing in power. In her hand smaller than my fin- translucent pearl surrounded by
the neonatal intensive care unit ger. I had looked after her for a red halo. Inside the pearl were
(NICU), we used the cold light to 3 weeks, but I’d never seen her black lines, some of which were
find our patients’ veins, but in face — it was always obscured veins. We moved the light up and
the baby in front of us, we found by equipment that was helping down the limb, tracking each
nothing. her breathe. Yet her vigor far ex- black line to see if it might be a
My attending physician switched ceeded her size; she had already vein long and straight enough
off the cold light. I looked at my survived two different infections to accommodate an intravenous
patient, pondering this tiny em- and now needed a blood trans- cannula.
bodiment of life writhing inside fusion. To give her the transfu- For a moment, I looked at my

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PERS PE C T IV E Losing Touch

own arm, its veins bulging from noxiousness. In my mind, I could emergency consent only, in the
the heat of the incubator. Fortu- still see the imprint of a laryngo- absence of parents. The complex-
nate to have veins that can easily scope blade in the baby’s neck as ities of neonatal medicine, the
be seen and felt, I often use my she was intubated and feel the difficulties of neonatal proce-
own limbs as an anatomy refer- silent gags of a voiceless new- dures, and the absurdities of
ence when inserting an intrave- born as the orogastric tube minute size all overwhelm par-
nous line. I sometimes feel guilty passed through her mouth. The ents who are newly flooded with
for relying on this guide, espe- knowledge that these procedures the emotions of parenthood and
cially when I notice a parent’s were lifesaving dampened but protection. The parents’ role is re-
envious gaze at my arm as I did not eliminate my empathetic duced to receiving daily updates
make my nth attempt to find a discomfort. from a team that has usurped
vein in their child. “I am sorry After every blood test I’d had their position as the protectors
this is difficult. I hated needles as a child, I’d run into the arms and nurturers of their baby. Every
as a child,” I always say, adding, of my parents. But here in the time I see parents looking at
“I still hate getting my flu vac- NICU, there were no comforting their baby in an incubator, I imag-
cine every year.” hugs, no whispers of “It’s OK, ine them struggling to reconcile
Although in the NICU most it’s all over,” no rewards of lolli- the joyful anticipation of preg-
procedures are not done under pops or bravery stickers. When nancy with the frustrating real­
the watchful eye of worried par- we finished inserting the cannu- ity of a baby whose skin they
ents, I still felt the guilt and la, I cleaned the area, checked cannot touch, whose cries they
shared the parents’ pain. My pa- the insertion site for bleeding cannot hear, but whose pain
tient’s limbs were dotted with and leaks, and closed the doors they always feel.
puncture marks and bruises. of the incubator. The sterility I am conscious that in provid-
Practically, I used them as a rec- was as necessary as it was jar- ing surrogate incubators for ba-
ord of previous attempts and a ring. I glanced back as I walked bies who were born too soon,
road map for potential entry away and saw one tiny arm out- we in the NICU place painful
points. Viscerally, I could not stretched, while the other was restrictions on the most basic of
help but feel the twitch of a limb weighed down by the cannula. human relationships, the one be-
withdrawing from pain every Although we’d obtained the ac- tween parents and their child.
time a needle went through the cess we needed, the baby seemed Although the team always tries
baby’s skin. “I’m sorry, baby,” I to be reaching out for the paren- to involve parents in as much of
murmured. But who I was talk- tal touch she missed. the care and decisions as possi-
ing to — the still-nameless baby, But the only people she could ble, part of the NICU experience
who lacked the awareness to ac- touch worked in the NICU, living requires parents and baby to lose
cept apologies? The parents, ab- and thriving in an intimidating touch with one another. The
sent in body but present in mind? environment defined by a hawk- touch that is lost by parents is
Or was I really apologizing to ish hygiene policy, the complex gained by physicians, and we
myself for physicians’ facile re- fragility of the newborns, and know that our touch can hurt as
course to medical necessity as the minutiae of the care we pro- well as heal.
justification for inflicting physi- vided. When new parents first Taking on some of parents’
cal pain? From the moment this enter the NICU, I can always see responsibilities also means adopt-
baby was born, we had intubated the subdued heartache reflected ing their instinctive burdens.
her, fed her using an orogastric in their crestfallen faces. For Though I fully grasp the medical
tube, and repeatedly inserted in- them, the NICU is a place of necessity of our interventions, I
travenous lines to give her medi- hope, of patience, but also of sometimes find carrying them
cations. Although I knew these submission. For the first weeks out and justifying them as diffi-
invasions of her organs were nec- or months of their child’s life, it cult as parental bystanders find
essary in order to replace the is up to the NICU team to feed caring for their newborn from
lifeline from which she’d been and diaper their baby. Procedures afar, especially when it involves
prematurely separated, their im- are carried out, investigations so much discomfort for someone
portance did not diminish their done, and treatments started with so small. Not only am I the one

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PE R S PE C T IV E Losing Touch

doing the procedures, I am also “It’s just too much.” Sometimes I Disclosure forms provided by the author
are available at NEJM.org.
the one who can and must touch, wish the parents could stay, or the
viscerally connected and thus baby could understand me when From Queen Charlotte’s and Chelsea Hos‑
feeling the immediate effects of I apologize before inflicting more pital, Imperial College Healthcare NHS
Trust, London.
causing pain. suffering in the name of healing.
As I prepare to insert an intra- I stay, the baby’s foot in one This article was published on May 1, 2021,
venous cannula in my next pa- hand, cannula in the other, brac- at NEJM.org.
tient, his mother stands up and ing myself for the reflexive kick DOI: 10.1056/NEJMp2033590
leaves. “I can’t watch,” she says. as the needle pierces the skin. Copyright © 2021 Massachusetts Medical Society.
Losing Touch

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The New England Journal of Medicine
Downloaded from nejm.org at UNIVERSIDAD LIBRE on July 16, 2021. For personal use only. No other uses without permission.
Copyright © 2021 Massachusetts Medical Society. All rights reserved.