The New York Times. April 04, 2020

(Brent) #1
A6 N THE NEW YORK TIMES, SATURDAY, APRIL 4, 2020

Tracking an OutbreakGlobal Response


LONDON — Denying lifesaving
care to conserve public resources
is nothing new for Britain’s Na-
tional Health Service.
In expensive treatments for
cancer and other diseases, the
health service officially limits
what it will spend to postpone a
death: 30,000 pounds, or about
$37,000, for each year of full “qual-
ity” life provided to a patient.
In the case of a pandemic, the
public guidance from health offi-
cials for more than a decade has
been that doctors should prepare
to withhold scarce resources from
the weakest patients in order to
save more of the strong, espe-
cially with the use of life-sustain-
ing ventilators.
Yet now that a pandemic has fi-
nally arrived, the health authori-
ties this week balked at spelling
out exactly how to make those ag-
onizing choices, evidently for fear
of a public uproar.
Barraged with criticism from all
sides for its sluggish response to
the threat, the government of
Prime Minister Boris Johnson has
elected to avoid the political pain
of disclosing its already-drafted
criteria for deciding which pa-
tients should be allowed to die of
the disease — even those with
some chance of survival.
The absence of official guidance
could effectively force front-line
doctors to improvise their own cri-
teria, lawyers and ethicists say,
potentially consigning poor, aging
or disabled patients to the back of
the line.
Doctors in Northern Italy have
already reported withholding life-
extending support from patients
in order to devote scarce ventila-
tors to those with better odds.
Now other European govern-
ments and many American states
are scrambling to craft similar tri-
age policies in case their hospitals
become overwhelmed.
Yet the British government has
far more experience and exper-
tise than American states in ra-
tioning treatments for medical
problems, making its failure to de-
tail a policy especially striking.
“In the U.K., these are decisions
by public bodies for which they
are publicly accountable,” said
David Lock, a lawyer who is ad-
vising the British Medical Associ-
ation on legal and ethical issues.
“Therefore, there is an urgent
need for a clear framework for
doctors to make these decisions


on behalf of the public bodies that
employ them.”
Without more careful guide-
lines, “really terrible decisions
could be made,” said Peter Todd, a
lawyer who has represented au-
tistic patients who were denied
medical treatment by the National
Health Service.
Senior health officials took ini-
tial steps last week to develop
such a triage policy, quietly com-
missioning a small committee of
doctors and other experts to help
set a specific protocol for access to
ventilators, three people familiar
with the effort said. The office of
the chief medical officer had been
expected to issue the guidelines
by the end of last week.
After considering whether spe-
cial panels in each hospital should
make such decisions, the commit-
tee leaned toward setting a nu-
merical formula ranking chances
of survival, much like the calcula-
tions British doctors currently use
to rank patients seeking liver
transplants. Proponents argued
that a numerical ranking could lift
burdens from front-line doctors
while reducing inconsistencies
from one hospital to the next.
On Monday, however, for fear of
sowing panic, health officials re-
versed themselves and decided to
put off disclosing the effort at all,
people familiar with the project
say. Officials argued that the re-
cently imposed policy of strict so-
cial distancing might slow the rate
of infections enough to avoid the
need for such triage.
Asked about the decisions first
to draft and then pull back the tri-
age criteria, representatives of
the Department of Heath and So-
cial Care sent an emailed state-
ment: “As the public would ex-
pect, we do lots of work to prepare
for a number of different scenari-
os so we are as prepared as possi-
ble.”
Despite official hopes of avert-
ing the darkest scenarios, though,
doctors say the strains on the
British health care system contin-
ue to build. Desperate efforts to
produce more ventilators have so
far failed to significantly expand
the number available — currently
fewer than 10,000 — and the num-
bers of those infected continue to
climb.
British health officials said Fri-
day that the number of hospital
deaths in the previous 24 hours
had reached a new high of 684,
bringing the total to 3,605. The full
extent of infection remained im-

possible to quantify, in part be-
cause testing materials were in
such short supply.
The British authorities began
issuing vague pandemic guidance
more than a decade ago, telling
health care providers to give pref-
erence to those most likely to ben-
efit from access to limited re-
sources like ventilators.
“Everyone matters equally, but
this does not mean that everyone
is treated the same,” the health de-
partment declared in ethical guid-
ance formulated after the H1N1,

or swine flu, pandemic in 2009.
“Even if existing critical care
bed capacity can be maximally es-
calated, during the peak of a pan-
demic, there may be 10 times as
many patients requiring mechan-
ical ventilatory support as the
number of beds available,” the
health department estimated in
pandemic flu guidance first issued
in 2009.
“Additional security measures,”
the same document warned, may
be needed to protect doctors mak-
ing triage decisions from the
wrath of people whose friends or
relatives were denied life-sustain-
ing breathing support.

But such general guidance
failed to address many of the most
delicate questions, including how
to decide which patients stand the
best chance of survival.
Advocates for the aged warn
that older but physically healthy
patients may suffer unfairly if
doctors use age as a stand-in for
resilience, and that decision-mak-
ing may vary from one hospital to
another. Diabetes, heart disease,
obesity or other health risks might
all be counted differently.
Ethicists warn that the poor
would probably suffer dispropor-
tionately because they are more
likely to have pre-existing health
problems. Without specific guide-
lines, they say, the decisions of
doctors may be influenced by un-
conscious bias against ethnic mi-
norities, people with mental dis-
abilities and other groups.
“This has been the most alarm-
ing concern for people with dis-
abilities all around the world,”
said Catalina Devandas, the
United Nations special rappor-
teur on the rights of persons with
disabilities. “The highlight of this
drama is that it seems to be the de-
fault reasoning of the mainstream
society: The lives of persons with
disability are not considered to be
of as much value.”
In the absence of guidelines
from Britain’s top health officials,
the same body that applies the
£30,000 cap on new treatments —
the official National Institute for
Health and Care and Excellence,
usually referred to by the acro-
nym N.I.C.E. — sought to step in.

Last week N.I.C.E. advised doc-
tors to prioritize ventilator access
in part by consulting a numerical
score known as a Clinical Frailty
Rating.
But the frailty rating is a meas-
ure of physical activity and gen-
eral self-sufficiency that was de-
signed to evaluate only seniors,
not the broader population. Law-
yers representing people with au-
tism and other disabilities quickly
complained, and N.I.C.E.
amended its guidance to specifi-
cally rule out any application to
younger people or those with
learning disabilities or long-term
disabilities, though patient advo-
cates argued the changes were in-
sufficient.
Then this week the British Med-
ical Association, the main doctors
trade group, issued its own gen-
eral guidelines, arguing that its
members and other health care
providers should be given special
priority. That way they might re-
turn to caring for others, the asso-
ciation reasoned.
“Decisions about which groups
will have first call on scarce re-
sources may also need to take ac-
count of the need to maintain es-
sential services,” the medical as-
sociation said. That should in-
clude, it said, “those individuals
involved in tackling the immedi-
ate health and social care aspects
of the pandemic, and particularly
those with scarce and irreplace-
able skills.”
The association also said that
health care providers should pre-
pare not only to withhold life-sus-

taining treatment but also to ac-
tively withdraw it in order to
transfer it to others — even when
withdrawal might hasten the
death of a patient who had been
improving.
Even if the patient is “stable or
even improving,” the association
said, a ventilator could be with-
drawn if “objective assessment in-
dicated a worse prognosis than
another patient who requires the
same resource.”
Some legal experts, though, ar-
gued that patients facing the with-
holding or withdrawal of respira-
tory support deserved at least a
day in court. British courts should
have a chance to rule on triage
policies in a test case before they
are applied more broadly, said
Kathleen Liddell, director of the
Cambridge Center for Law, Medi-
cine and Life Science.
“This maxim that we should be
saving the most number of lives is
not complete,” she said. “It has to
be while respecting the human
rights of the patient.”
Some British doctors are al-
ready seeking to reassure frail pa-
tients that they will not be left for
dead, even if efforts to save them
can only go so far.
If treatment becomes futile,
“we will change our focus from
cure but most importantly we will
continue to care,” Dr. Matthew
Morgan, an intensive care doctor
in Wales, wrote in an open letter to
vulnerable patients published last
month in the BMJ, a British medi-
cal journal. “We have not forgot-
ten about you.”

BRITAIN


Who Gets Care in U.K.?


Vague Rationing Policy


Puts Burden on Doctors


A convention center in London was converted into a temporary hospital as the pandemic strains the British health care system.

POOL PHOTO BY STEFAN ROUSSEAU

By DAVID D. KIRKPATRICK
and BENJAMIN MUELLER

Health officials opted


not to disclose criteria,


fearing a public panic.


saging app, set up by the relatives
of coronavirus victims. Govern-
ment censors have scrubbed im-
ages circulating on social media
showing relatives in the city lining
up at funeral homes to collect
ashes. Officials have assigned
minders to relatives like Mr. Liu,
to follow them as they pick burial
plots, claim their loved ones’ re-
mains and bury them, grieving
family members say.
“Where is the dignity after
death?” Mr. Liu asked. “Where is
the humanity?”
The ruling Communist Party
says it is trying to prevent large
gatherings from causing a new
outbreak. But its tight controls ap-
pear to be part of a concerted at-
tempt to avoid an outpouring of
anguish and anger that could be a
visceral reminder of its early mis-
steps and efforts to conceal the
outbreak. Those same public dis-
plays or discussions of loss could
also feed skepticism over how
China has counted the dead.
Wuhan accounted for nearly
two-thirds of China’s total infec-
tions and more than three-quar-
ters of its deaths. But in the early
weeks of the outbreak, medical
workers said many deaths from
the coronavirus weren’t counted
because of a shortage of test kits.
More recently, a truck driver
cited in a report by Caixin, an in-
fluential newsmagazine, talked
about dropping off thousands of
boxes for storing ashes at Hankou
Funeral Home, one of eight fu-
neral homes in the city. While the
numbers raised doubts about the
death toll, it was unclear whether
the boxes were used for just coro-
navirus victims or more broadly.
The Chinese government says
it has been open and transparent
about the scale of the outbreak
within its borders. But the party
also wants to closely orchestrate
how the epidemic’s victims should
be mourned and remembered. It
is portraying them as martyrs and
compatriots who gave their lives
in the fight against the spread of
the disease, rather than victims of


an outbreak.
The government said it would
hold a nationwide moment of si-
lence on Saturday, the day of the
annual Tomb Sweeping Festival, a
time for honoring ancestors. Ac-
tivities will stop, flags will fly at
half-staff, and alarms and horns
will be sounded for three minutes
starting at 10 a.m.
The moment of silence will
probably not be enough to soothe
many families in Wuhan who have
chafed against the state’s efforts
to assert control over the grieving
process.
Some have demanded justice
and accountability from the gov-
ernment, hoping that their loved
ones did not die in vain. The gov-
ernment fired two top local offi-
cials in February, presumably
over the bungling of the initial re-
sponse, but it has not said if it
would conduct further investiga-
tions.
“I demand an explanation,” said
Zhang Hai, a 50-year-old native of
Wuhan whose father, Zhang Lifa,
died after he was infected with the

coronavirus in a hospital. He
wants to know why it took officials
weeks to inform the public that the
virus could spread among hu-
mans. “Otherwise, I can’t give my
father closure and I will never be
at peace.”
Other residents have tried to
find their own way to privately
memorialize their loved ones with
small, makeshift acts of remem-
brance.
Maria Ma, a 23-year-old design
teacher at a college in Wuhan,
knew that her grandfather would
have wanted the family to hold a
wake for him in a large tent in
which relatives could keep vigil
and friends could burn incense.
But when he and Ms. Ma’s
grandmother died in January, his
wish couldn’t be met. Instead,
their bodies were quickly taken
away and cremated.
With Wuhan under lockdown,
Ms. Ma and her family had no
choice but to make do with simple
rituals at home. They burned
“spirit money,” wads of paper
printed to look like currency, fol-

lowing the custom of ensuring
that loved ones have enough to
spend in the afterlife. On the 49th
day after her grandfather’s death,
the men in Ms. Ma’s family cut
their hair, also in line with tradi-
tion.
Still, she said, the family was
racked with guilt over not being
able to organize a proper funeral.
“We keep asking ourselves,
‘How could this have happened to
our family?’ ” Ms. Ma said by
phone. “We are just ordinary peo-
ple. We never did anything bad to
anyone.”
In recent days, as the official
number of new cases in China has
dwindled, the authorities in Wu-
han have turned to dealing with
deaths. Officials have paid fam-
ilies about $420 for each relative
who died during the epidemic, re-
gardless of the cause. Relatives of
coronavirus victims are also enti-
tled to a 30 percent discount on
burial plots and free cremation
services.
Some, like Peng Bangwen, are
finding that the monetary support
doesn’t address the stigma of the
virus that extends even after
death.
Mr. Peng wants to bury his fa-
ther, Peng Andong, who died in
early February, in the family’s an-

cestral home outside of Wuhan.
But village officials rejected the
idea, saying they didn’t want the
remains of a coronavirus patient
there.
“Whether it’s with a quiet and
peaceful funeral, or a grand and
ornate funeral, I just want to have
it taken care of,” Mr. Peng, 32, who
works at a hotel in Wuhan, said by
phone. “Otherwise it is too cruel,
both for me and for him.”
Others, like Mr. Liu, the finance
worker who buried his father, are
struggling to come to terms with
their loss.
His father, Liu Ouqing, was a re-
spected member of the Commu-
nist Party who had led a distin-
guished life as a civil servant and
college administrator and had
started enjoying retirement only
in recent years. The father and
son had grown closer, and the eld-
er Mr. Liu doted on his 11-year-old
granddaughter.
In January, the elder Mr. Liu
had gone to a hospital in Wuhan
for a regular checkup. There, he
became infected with the coro-
navirus.
His son, who had sneaked into
the hospital by pretending to be a
patient, said Mr. Liu fought val-
iantly but knew his end was near.
His father told him to look in the

bedside drawer, where he had
kept notes on his finances and
recipes for his granddaughter’s
favorite dishes.
On Jan. 29, he died, with his son
by his side.
Mr. Liu, devastated, sought out
a Buddhist priest, who conducted
a ritual in a temple to monitor the
state of his father’s soul. On some
nights, Mr. Liu quietly read Bud-
dhist prayers for his father.
Late last month, he received a
call from the authorities notifying
him to prepare for the burial.
Mr. Liu was assigned two offi-
cials, one from his father’s work-
place and the other a local neigh-
borhood worker, who said they
were there to provide support.
Last week, they went with him to
Biandanshan Cemetery, in the
city’s southwest. He chose the
most expensive option, a south-
facing plot that had mountains be-
hind it and a lake below. It cost
$14,000.
They held the funeral two days
later. A label had been affixed to
his father’s blank headstone not-
ing the grave’s location: Row 24,
Number 19. The tombstone would
come later.
“Like a house without a door,”
Mr. Liu said. With a marker, he
wrote his father’s name at the top
of the headstone.
When the burial was over, the
officials asked the family to sign a
form indicating that they had
completed their assignment.
Two days later, Mr. Liu returned
to the cemetery. This time, he
went alone and spent an hour at
his father’s grave. “Wait for me
and Mom,” he told his father. “One
day we will all live together in
your new home.”
Mr. Liu said he would not stop
pressing the government to pun-
ish the local officials responsible
for initially concealing the out-
break and to provide fair compen-
sation to the families of the vic-
tims.
“They think that I’ll go away
now just because I’ve completed
the burial?” he said. “No. I’m not
finished yet.”

CONTROLLING THE NARRATIVE


As Survivors Fume, China Insists on Burying the Dead Quickly and Quietly


Liu Pei’en, left, with his father’s remains. Above, Mr. Liu’s par-
ents’ wedding picture. Mr. Liu said officials from Wuhan went
with him to the cemetery and watched him bury his father.

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