PE R S PE C T IV E
Disclosure forms provided by the authors
Treating Addiction as a Terminal Disease
Treating Addiction as a Terminal Disease
Amy E. Caruso Brown, M.D.​​
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This article was published on December 11,
are available at NEJM.org.
From the Department of History, University
of Sydney, Sydney (J.H.D.); and the Depart-
ment of Global Health and Social Medicine,
Harvard Medical School, Boston, and the
Department of the History of Science, Har-
vard University, Cambridge — both in Mas-
sachusetts (D.S.J.).
“I’vethe never been fired before,”
attending physician said
when I returned his page for an
ethics consultation.
His patient, Ms. A., had a his-
tory of opioid use longer than her
adulthood and had been through
inpatient rehabilitation, methadone
maintenance, and buprenorphine
treatment programs without last-
ing success. She’d been admitted
to the hospital in septic shock,
severely malnourished. An echo-
cardiogram revealed that two
valves had been destroyed by the
infection. Although this was Ms.
A.’s first episode of endocarditis,
her condition was too unstable
for her to survive surgery. Her
distraught family agreed to a do-
not-resuscitate order. But despite
the dire prognosis, Ms. A.’s condi-
tion slowly improved. Just as the
cardiothoracic surgeon had agreed
to operate, Ms. A. announced that
she wanted to be discharged. She
did not want surgery. She just
wanted more morphine to allevi-
ate her intractable chest pain.
When the attending physician,
questioning her decisional ca-
pacity at that moment, hesitated,
Ms. A.’s family fired him.
As I listened to his account, I
focused on the obvious questions:
The New England Journal of Medicine
Copyright © 2020 Massachusetts Medical Society. All rights reserved.
Sounding the Alarm on Climate change
consequences of nuclear war. N Engl J Med
2019, at NEJM.org.
1. Leaf A. Potential health effects of global
climatic and environmental changes. N Engl
J Med 1989;​321:​1577-83.
2. Leaf A. Alexander Leaf, M.D.:​autobio-
graphical memoir and oral history interview
with Arnold S. Relman. Boston:​Harvard
Medical School, 1996.
3. Leaf A. New perspectives on the medical
Did Ms. A. have decisional capac-
ity, and if not, who had the legal
authority to decide on her be-
half ? At her bedside, her sibling
deferred decision making to his
spouse. New York state law strict-
ly governs decision making for
incapacitated patients who have
not appointed a health care proxy
and limits the scope of decisions
made by surrogates who are not
designated proxies. In such cases,
life-sustaining treatment can be
withheld or withdrawn only when
the patient has an illness expected
to cause death within 6 months,
regardless of treatment; is perma-
nently unconscious and treatment
would be extraordinarily burden-
some; or has an irreversible con-
dition for which treatment would
be inhumane or extraordinarily
burdensome.
Was Ms. A. likely to die within
6 months even with treatment?
Though she might well recover
from surgery, her long-term out-
come was far less certain. Unless
her treatment included medica-
tion for opioid use disorder (OUD)
— preferably initiated in an in-
patient setting and coupled with
ongoing trauma-informed mental
health care and various social
supports — she would almost
n engl j med 382;3 nejm.org  January 16, 2020
1986;​315:​905-12.
4. Health in the greenhouse. Lancet 1989;​
1:​819-20.
5. Dunk JH, Jones DS, Capon A, Anderson
WH. Human health on an ailing planet —
historical perspectives on our future. N Engl
J Med 2019;​381:​778-82.
DOI: 10.1056/NEJMp1913916
Copyright © 2019 Massachusetts Medical Society.
Perspective
certainly have a relapse. The hos-
pitalist had offered to facilitate
referrals for OUD treatment, but
acute care was his priority, and
the hospital lacked a substance
use team to assist him. Compli-
cating matters, Ms. A. had neither
housing nor employment pros-
pects, both of which are key to
good outcomes.
Terms like “inhumane” and
“burdensome” were subjective, and
I questioned how they applied to
Ms. A.’s situation. Was continu-
ing to live with addiction “extraor-
dinarily burdensome”? Who has
the right to decide when the bur-
den of living with mental illness,
including substance use disor-
ders, is excessive? Does it matter
whether potentially effective treat-
ments are available if they’re in-
accessible or infeasible in the pa-
tient’s social situation? Ethicists
remain divided over such ques-
tions, simultaneously reluctant to
infringe on the autonomy of ap-
parently competent adults and
concerned about the implications
of supporting such decisions for
patients with mental disorders.1
I walked over to the hospital
to meet Ms. A., her family, and
the medical team. The atmosphere
was tense. Ms. A.’s moods swung
207
PERS PE C T IV E
between anger and despair, but
she was startlingly lucid. I had
no doubt that she understood ex-
actly what she was choosing. She
simply wanted to go home, or to
a hospice facility, and die peace-
fully. She punctuated sobs with
exclamations of “I’m such a piece
of shit for doing this to you!”
and “I’m done. I’m ready to be
done. I’ve fought long enough.”
Her appearance — hollow cheeks,
deep circles under her eyes, thin-
ning hair — made it easy to see
her as a dying woman. And though
she was exhausted and grieving,
her decisional capacity was clear.
Eventually, her brother left the
room. I followed, wanting to give
Ms. A. a chance to talk privately
with the palliative care physician
about what might happen next.
Outside her room, her brother
punched the cinder-block wall and
began to cry. A few months ear-
lier, he’d made the wrenching
decision to cut ties to his sister,
feeling that their relationship and
her disease were putting his chil-
dren in danger. Now he blamed
himself for not protecting her.
As a pediatric cancer special-
ist, I was accustomed to bearing
witness to grief and loss, and I
valued being present with fami-
lies even when science had noth-
ing more to offer. The statistics
of addiction are, in many ways,
starker than those of childhood
cancer. In 2017, more than 70,000
people died from drug overdoses,
two thirds of them involving opi-
oids. Even so, there was some-
thing profoundly different be-
tween reading those numbers and
looking in the eyes of a young
person accepting her own death,
a death that had more to do with
the failures of society than of
science. Could we really compare
208
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Copyright © 2020 Massachusetts Medical Society. All rights reserved.
Treating Addiction as a Terminal Disease
— scientifically, medically, ethi-
cally, politically — trying anoth-
er round of inpatient rehab after
the first three have failed to try-
ing a fourth round of radiation?
Addiction and terminal dis-
ease are not equivalent. Yet pa-
tients like Ms. A., their families,
and their clinicians can be driven
to act as if they are. Although
outcomes after valve replacement
are probably similar among pa-
tients with injected-drug use and
among those without, patients
who continue to inject drugs are
at risk for recurrent endocarditis
and other complications; most
deaths among such patients oc-
cur more than 6 months after
surgery.2 Meanwhile, only 25 to
50% of patients receive any sub-
stance use treatment in a given
year, and even fewer receive med-
ication for OUD.3,4 More than
2 million people are candidates
for such treatment — a number
far outstripping the availability
of physicians with a license to
prescribe the medications, which
requires a special waiver, and of
counselors or other therapists, a
shortage that is particularly acute
in rural areas like Ms. A.’s home-
town.3 The 2016 Comprehensive
Addiction and Recovery Act and
2018 Opioid Crisis Response Act
attempted to mitigate the prob-
lem by allowing nurse practition-
ers and physician assistants to
receive waivers to prescribe bu-
prenorphine.5 The latter bill also
sought to make treatment more
accessible, in part by loosening
some of the restrictions on medi-
cation for OUD, though provi-
sions that might have increased
federal funding for inpatient men-
tal health care were dropped
from the final law.5
Access to care had been a
n engl j med 382;3 nejm.org  January 16, 2020
The New England Journal of Medicine
challenge for Ms. A., and she
faced many other barriers to suc-
cessful treatment. She had expe-
rienced physical and sexual vio-
lence, poverty, and homelessness.
Hearing their stories, I was dev-
astated for both Ms. A. and her
brother. When Ms. A. told us,
disdainfully, that she had no rea-
son to think that any treatment
offered would work “this time,”
we had little evidence to prove
her wrong. But what if we could
have confidently assured her that
we could provide seamless, com-
prehensive care for all her med­
ical, psychological, and social
needs? I wished for a health care
system equipped to address the
kind of recurrent and intergener-
ational trauma that this family
had suffered, and for a commu-
nity that would accept and sup-
port Ms. A. into recovery. The ex-
clusion of people with substance
use disorders from federal anti-
discrimination protections, for
example, can lead to eviction,
homelessness, and incarceration,
perpetuating the cycle of trauma.
Ms. A.’s decision to accept pallia-
tive care provided a heartrending
solution to her homelessness. She
could go to an inpatient hospice
facility.
For many people, the choice
to forgo curative therapy and ac-
cept only palliative care arises
from an assessment of their per-
ceived quality of life with treat-
ment and the quality of death
they desire. Although some also
have coexisting depression or
other mental illness, such diag-
noses don’t necessarily interfere
with their capacity to refuse treat-
ments. Ms. A. retained that capac-
ity, but though that part was ethi-
cally clear, I still struggle with
her decision. Ms. A. deserved to
PE R S PE C T IV E Treating Addiction as a Terminal Disease

live. Choosing what her death
would look like was her right,
but I wish she’d had better op-
tions, and I regret that respect-
ing her final choice was the only
dignity I could offer. Such is the
inevitable result of treating ad-
diction as a disease in a system
that is not equipped to do so suc-
cessfully, in a society that often
pays mere lip service to the idea
that people with substance use
disorders need care instead of
judgment.
The patient’s initial and some identify-
ing details have been changed to protect
her privacy.
Disclosure forms provided by the author
are available at NEJM.org.
From the Center for Bioethics and Humani-
ties and the Department of Pediatrics, SUNY
Upstate Medical University, Syracuse, NY.
1. Blikshavn T, Husum TL, Magelssen M.
Four reasons why assisted dying should not
be offered for depression. J Bioeth Inq 2017;​
14:​151-7.
2. Hall R, Shaughnessy M, Boll G, et al.
Drug use and postoperative mortality fol-
lowing valve surgery for infective endocardi-
tis: a systematic review and meta-analysis.
Clin Infect Dis 2019;​69:​1120-9.
3. Jones CM, Campopiano M, Baldwin G,
McCance-Katz E. National and state treat-
ment need and capacity for opioid agonist
medication-assisted treatment. Am J Public
Health 2015;​105(8):​e55-e63.
4. Stein BD, Dick AW, Sorbero M, et al. A
population-based examination of trends and
disparities in medication treatment for opioid
use disorders among Medicaid enrollees.
Subst Abus 2018;​39:​419-25.
5. Congressional Budget Office. Direct
spending and revenue effects of the opioid
crisis response act of 2018, amendment
number 4013 to H.R. 6. September 10, 2018
(https://www​.cbo​.gov/​system/​f iles?file=2018​
­09/​OpioidCrisisResponseAct​.pdf).
DOI: 10.1056/NEJMp1909298
Copyright © 2020 Massachusetts Medical Society.
Treating Addiction as a Terminal Disease

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Downloaded from nejm.org by Nilberto Nascimento on January 15, 2020. For personal use only. No other uses without permission.
Copyright © 2020 Massachusetts Medical Society. All rights reserved.