B2 EZ BD K THE WASHINGTON POST.SUNDAY, MAY 15 , 2022posed to get back to work. There’s not much of
a grace period when it comes to grief. And
because of that, long-term grief has been
invisible to those who most need to recognize
it.
During the pandemic, I attended a virtual
conference for families who have lost chil-
dren. One of the other bereaved moms gave a
presentation about complicated grief. She
ticked through some of the signs and symp-
toms: intense yearning that interferes with
normal life more than a year after the death,
numbness and disbelief, avoidance of social
contact, difficulties moving on. It was as
though she were describing my life in the 10
years that followed my son’s death.
For the first time, I didn’t feel inadequate
for the difficulties I had adjusting to the loss
of my only child.
I never received an official diagnosis back
then because such a diagnosis didn’t exist. I
didn’t even associate many of my behaviors
with grief. Neither, apparently, did those
around me. No one suggested that my
growing social anxiety, my persistent night-
mares or my general paralysis in life might
have been due to grief. And because of that, I
never thought to ask for help. I wish I had. I
believe it would have made me feel less alone
— less “defective,” not more so. I don’t thinkinability to rejoin the normal stream of life.
Those who lose children are at particular risk,
as are those who lose a loved one to violence,
natural disasters or other tragedies. Those
without support systems or who have other
significant life stressors are also at risk.
The identification of prolonged grief disor-
der comes at a time when it may be especially
needed. Deaths from covid-19 in the United
States have now reached 1 million. With
covid’s grim bereavement multiplier, that
could mean millions more at risk for pro-
longed grief. This kind of complicated mourn-
ing is essentially to grief what long covid is to
covid.
The official inclusion of the diagnosis caps
years of debate over whether labeling some-
thing “prolonged grief disorder” amounts to
pathologizing grief. None of us escapes with-
out losing something or someone we love
dearly. The process of grieving a loved one is
as individual and idiosyncratic as the person
who has died. Critics argue that to suggest
otherwise is to indicate that a normal process
is a disease.
But lost in this heated discussion is what
it’s like to live with deep grief year after year.
We are taught to suck it up. We are taught to
power through. We get our few days of
“bereavement leave,” and then we’re sup-love you, and whose hugs I sometimes still
feel in my dreams.
The third lie was the hardest.
No, I don’t have children , I answered for
years when people asked. This would later
send me into a spiral of shame and agony.
“No” felt like denying he had ever lived. “Yes”
forced me to explain that he was dead and
brought up memories that were still too
painful.
These lies kept me frozen for a long time.
It was only recently that the American
Psychiatric Association put a name to what I
most likely experienced: prolonged grief
disorder. The organization included pro-
longed grief disorder in the updated Diagnos-
tic and Statistical Manual of Mental Disor-
ders (DSM-5) it published in March. The
diagnosis refers to intense emotional pain
that persists more than a year after a loss.
Criteria include numbness, withdrawal, anGRIEF FROM B1What I felt for years aftermy s on died has a namethe new diagnosis pathologizes grief so much
as makes it visible to those who suffer it and
to those in their lives who might be able to
help. Maybe the best thing that can come
from the new diagnosis is not the view that
long grief is disordered or maladaptive, but
that it exists for some, is a normal response to
an abnormal situation and deserves compas-
sion.
We often say of parents who have lost
children that they will never be the same. This
is necessarily true, as it is for anyone who has
suffered a profound loss. But it doesn’t mean
we can’t eventually integrate that loss in such
a way that life has meaning and joy again. To
get there, though, requires all of us to be more
aware. Recognizing when someone’s behav-
iors might be grief-related, even years later,
could encourage more of us to talk about it,
might make it okay to say Yes, it still hurts ,
when someone asks how we are doing. It
might make it okay to get a little help. And the
loved ones of at least some of the million
Americans who have died from covid-19 are
bound to need it.
Twitter: @clsmith321Carol Smith is an editor for NPR affiliate KUOW
Public Radio in Seattle and author of “Crossing the
River: Seven Stories That Saved My Life.”California
G ov. Gavin
Newsom’s
proposed Care
Courts have set
off a debate
about civil
rights and
human needs,
explain
sociologists
Neil Gong
and Alex V.
BarnardMICHAEL MACOR/SAN FRANCISCO CHRONICLE/ASSOCIATED PRESSA homeless
encampment in
Oakland, Calif., in
2018. California
officials are
searching for
solutions to the
state’s homelessness
problem, which has
reached crisis
levels.tion as “incarceration” and a doctor’s petition
as “charges”; it all felt punitive. But we’ve also
seen judges and lawyers listen attentively to
patients’ unusual beliefs, or order the mental
health system to provide unlimited drawing
supplies for a person living in a locked facility.
This may seem trivial, but a fair process, even
for people who ultimately will lose their case, is
both a decent thing to pursue and a critical
ingredient for making sure coercion doesn’t
lead to cynicism and disengagement. Care
Courts legislation should prioritize peers with
lived experience for the role of designated
“supporter,” and give them real power to inter-
vene in the court process to ensure procedural
justice and respect.
This user-informed system will only be win-
dow dressing, though, if the care and court
procedures are underfunded, and the ACLU is
correct that increased coercive powers have
the potential for abuse. Yet even civil liberties
activists should want something like Care
Courts — shaped and improved with their
input — to succeed in some form. Many voters
want streets cleared of homeless people with
mental health problems or addiction, and
advocates’ hesitancy to come to the table will
only increase support for harsher proposals
that will fast-track people into locked facilities
where they can be pinned down and forcibly
injected with medication. The visible failure to
address the challenges of a small subset of the
homeless population will undermine support
for the independent housing and voluntary
services appropriate for the vast majority.
Effective implementation will not be cheap
or easy: It requires building up the infrastruc-
tures for housing, voluntary care and court-or-
dered treatment simultaneously. It will also
require that proponents of a more strong-
armed approach, who think the ends justify
even harsh means, recognize that poorly exe-
cuted coercion will backfire. If Newsom’s Care
Courts are the breakthrough he promises, it
won’t be because they forced more people into
care against their will — it will be because they
forced the system to provide the care people
want.delivers effective services. First, people who
have been through the existing coercive system
— including those alienated by it — should
have a primary voice in designing the new one.
“Peer supporters” with disabilities are often
better at connecting with patients than clini-
cians are, and they have an untapped insider’s
perspective on what makes involuntary care go
wrong. We envision the state working with
these peers to develop best practices for emer-
gency responders and more welcoming intake
procedures for clinics. European hospitals
have begun to redesign psychiatric wards with
just this kind of patient input. Relatedly, Care
Courts could emphasize alternative emergen-
cy options such as “peer respites,” short-term
housing for people in crisis staffed by others
with similar experiences, instead of using hos-
pitalization as a default.
Care Courts would certainly depend in part
on the implicit threat of guardianship. To be
effective, however, the focus must not be on the
threats but on relationship-building to figure
out what people want — even if they say “no” to
treatment at first. Too often, treatment refusal
is taken at face value. Newsom’s Care Courts
would move us in the right direction by obligat-
ing providers to engage people over the course
of a year, making it less likely that providers
would drop complex cases.
But even persistent outreach won’t lead to
real therapeutic relationships unless clinicians
listen. This starts with acknowledging people’s
legitimate gripes with the system, like having
been overmedicated during past hospital
stints, discharged with nowhere to go or placed
in dilapidated housing that felt more danger-
ous than the streets. Unless providers deliver
something better, they will never get buy-in.
We’ve seen “treatment resistant” people be-
come open to therapy or medication, but only
after clinicians offered them help with their
own priorities, such as replacing lost identifi-
cation cards, clearing citations and fines, or
rides to appointments. Care Court treatment
plans and reimbursement rules need to em-
power clinicians with the resources and hous-
ing stock to address the whole range of clients’
social, not just medical, needs.
Finally, even in those rare cases that do move
to legal guardianships, guidance from people
who have been through such processes re-
mains crucial. Research shows that people
often place less weight on their degree of legal
independence than on whether they are treat-
ed with dignity and respect. We’ve witnessed
hearings where patients described their trans-
portation to an ER as an “arrest,” hospitaliza-talking to themselves,” he said.
Both of us are sociologists who have studied
California’s public mental health system and
worked to understand the opposing perspec-
tives. In Newsom’s proposal — which has al-
ready cleared the state Senate’s Judiciary Com-
mittee — we see an opportunity to rethink the
terms of the debate. The Care Courts, if imple-
mented with sensitivity and robust resources,
could actually be a step forward. But for that to
happen, each side will have to acknowledge
some hard truths — namely, that their oppo-
nents make some reasonable points.
The hard truth that advocates of forced
treatment ought to concede is that coercion
often backfires. Each year in California, tens of
thousands of people are already transported
involuntarily to ERs and admitted to hospitals
against their will. These involuntary hospital-
izations may save a person’s life in the moment,
which is no small thing, but research shows
that many who undergo this process are trau-
matized and humiliated, leading to increased
suicide risk and long-term distrust of treat-
ment providers. When delivered in a heavy-
handed way, court-ordered treatment is not
only ineffective but can also drive people deci-
sively away from essential services.
Anti-coercion advocates, on the other hand,
are right that most homeless people are clam-
oring for voluntary resources and housing.
(Newsom’s last two budgets included $14 bil-
lion in new funds to combat homelessness,
through housing and services, to be distribut-
ed over several years; it is unclear what the tab
for Care Courts would be, though they may
draw on those funds.) But the reality is that
some people who might have accepted assis-
tance earlier in their lives, had it been avail-
able, have deteriorated psychologically or be-
come so skeptical of providers that they won’t
accept help they need. One county official we
interviewed (granted anonymity by university
protocols) described an elderly homeless per-
son with psychosis who had refused more than
100 offers of supported housing. We’ve ob-
served such refusals ourselves, and we’ve
watched people drink themselves to death or
die from untreated medical conditions when
left with purely voluntary supports in inde-
pendent apartments. Our society should not
sacrifice these vulnerable people on the altar of
a one-size-fits-all ideal of voluntary care.
Three goals should be kept in mind as Care
Courts (or similar approaches, like a new
court-mandated treatment program in Wash-
ington state) are designed, to ensure that
public policy transcends polarized ideas andC
alifornia’s intertwined mental health and
homelessness crises have become impos-
sible to ignore: The state has an astonish-
ing 160,000 unhoused people. In Los Angeles,
an estimated 20 percent of them have a formal
diagnosis of serious mental illness, and the
county jail claims the dubious distinction of
being the country’s largest de facto psychiatric
facility. In San Francisco, homeless deaths last
year more than doubled — mostly because of
overdoses. In response to the crisis and voters’
restlessness on the issue, California Gov. Gavin
Newsom (D) proposed in March tackling the
problem with a sweeping new plan involving
something called Care Courts that could push
people with psychosis into treatment.
Newsom’s program would allow providers,
family members, first responders and some
local officials to petition for a court order of 12
months of supervised treatment and housing,
with the possibility of an extension. A public
defender and a designated “supporter” would
advocate for this person before a county court.
Officially voluntary, participation in treatment
would be encouraged by an implicit threat:
Continued refusal might lead to a legal guard-
ianship that could force people to take medica-
tion and live in locked facilities. The courts
would also track county governments to en-
sure they provide the services outlined by the
state and would sanction those that fail to
comply.
When the proposal was unveiled — it could
involve 7,000 to 12,000 people at first, the
governor said — California was immediately
plunged back into a polarized debate that has
haunted mental health politics since the 1960s,
when the United States moved away from
large-scale psychiatric asylums. One side sees
the homelessness problem largely as a result of
civil rights protections that make it too diffi-
cult to force treatment on people who desper-
ately need it; the other asserts that there
simply aren’t enough care and housing re-
sources available and that the argument about
“excessive” civil rights is at best a distraction.
Indeed, civil liberty groups have lined up to
condemn the Care Courts proposal. The “dra-
conian” plan, one policy analyst at the ACLU of
Southern California said, “would take us back
to the bad old days of confinement, coercive
treatment and other deprivations of rights
targeting people with disabilities.” And it’s true
that Newsom sounded like a critic of the civil
liberties approach when he announced the
new policy: “There’s no compassion with peo-
ple with their clothes off defecating and urinat-
ing in the middle of the streets, screaming andForcing the homeless into treatment can backfire. What about a firm nudge?Twitter: @NeilMGong
@avb_socNeil Gong is an assistant professor of sociology at
the University of California at San Diego. He is
writing a book about the public safety net and elite
private psychiatric services in Los Angeles. Alex V.
Barnard is an assistant professor of sociology at
New York University. He is writing a book about
involuntary treatment in California.