Care near the End of Life - Stanford Center on Longevity

Transcription

PE R S PE C T IV E
Breast-Density Legislation
variably refer patients with dense
breasts for whole-breast ultrasound screening, with some practices referring 100% of such
women and others referring none.
Furthermore, only 45% of Connecticut women who were referred for follow-up ultrasonography actually received it.5 Still,
breast-density legislation provides
an opportunity to strengthen
patient–provider relationships by
encouraging physicians to engage
women in a conversation about
the risks and benefits of screening, regardless of breast density.
In this era of cost containment, and given the limited data
supporting screening ultrasonography, a rational and cost-effective approach to screening is
needed. So how should the medical community address the growing concern over breast density
and breast-cancer detection? It is
critical that radioloAn audio interview
with Dr. Slanetz
gists work with
is available at NEJM.org
other
specialists
and primary care physicians to
develop evidence-based recommendations regarding situations
in which supplemental screening
is advisable and which method is
most efficacious. For example,
some practices now use digital
breast tomosynthesis, which
leads to increased cancer detection while limiting the need for
additional imaging in women
with dense breast tissue, according to preliminary data.
Having dense breast tissue
does increase a woman’s lifetime
risk of breast cancer, but it’s important for providers to place
this risk in perspective for each
patient. Risk stratification will
be an essential tool in determining the best screening plan for
each woman. It would be helpful
if the medical community could
reach a consensus on how best
to advise women with dense
breasts with regard to the limitations of various screening tests
and the role of any supplemental screening. Then, practitioners
could base patient care on existing evidence and each woman’s
individual risk. Such an approach
might well maximize cancer
detection and minimize the

downsides of screening — especially false positives and the
risks of overdiagnosis and overtreatment.
Disclosure forms provided by the authors
are available with the full text of this article
at NEJM.org.
From the Department of Radiology, Beth
Israel Deaconess Medical Center (P.J.S.),
Harvard Medical School (P.J.S., P.E.F., R.L.B.),
the Department of Radiology, Massachusetts General Hospital (P.E.F.), and the Department of Radiology, Brigham and Women’s Hospital (R.L.B.) — all in Boston.
1. Kerlikowske K, Hubbard RA, Miglioretti
DL, et al. Comparative effectiveness of digital
versus film-screen mammography in community practice in the United States: a cohort
study. Ann Intern Med 2011;155:493-502.
2. Smith RA, Duffy SW, Gabe R, Tabar L,
Yen AM, Chen TH. The randomized trials of
breast cancer screening: what have we
learned? Radiol Clin North Am 2004;42:793806, v.
3. Tice JA, Ollendorf DA, Lee JM, Pearson
SD. The comparative clinical effectiveness
and value of supplemental screening tests
following negative mammography in women
with dense breast tissue. Institute for Clinical
and Economic Review, 2013 (http://www
.ctaf.org/sites/default/files/assessments/
ctaf-final-report-dense-breast-imaging-11.04
.2013-b.pdf).
4. Berg WA, Blume JD, Cormack JB, et al.
Combined screening with ultrasound and
mammography vs mammography alone in
women at elevated risk of breast cancer.
JAMA 2008;299:2151-63.
5. Hooley RJ, Greenberg KL, Stackhouse RM,
Geisel JL, Butler RS, Philpotts LE. Screening
US in patients with mammographically
dense breasts: initial experience with Connecticut Public Act 09-41. Radiology 2012;
265:59-69.
DOI: 10.1056/NEJMp1413728
Copyright © 2015 Massachusetts Medical Society.
Should We Practice What We Profess? Care near the End of Life
Philip A. Pizzo, M.D., and David M. Walker, B.S.
P
hysicians should be in a better position than
people
without medical training to judge
the likely value of health care services available near the end of
life. Yet several studies have revealed a disconnect between the
way physicians themselves wish
to die and the way the patients
they care for do in fact die.
A 1998 survey of participants
in the Precursors Study, which enrolled 999 physicians who gradu-
ated from Johns Hopkins School
of Medicine between 1948 and
1964, revealed that 70% had not
had a conversation with their own
personal physician about end-oflife care. But 64% had an advance
directive that they’d discussed
with their spouse or family, and
more than 80% indicated that
they would choose to receive pain
medication but would refuse lifesustaining medical treatments at
the end of life.1 Similar prefer-
ences were expressed in a 2013
survey of 1147 younger academic
physicians (a group that was more
diverse and included more women):
88.3% indicated that they would
forgo high-intensity end-of-life
treatment.2
Although physicians ought not
assume that their views about
dying should apply to others,
public surveys and research studies have shown that 80% of
Americans, like the large majority
n engl j med 372;7 nejm.org february 12, 2015
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595
PERS PE C T IV E
Care near the End of Life
Summary of IOM Committee Recommendations.*
Delivery of care
Government health insurers and care delivery programs, as well as
private health insurers, should cover comprehensive care, including
palliative care and hospice care for persons with advanced serious
illness who are nearing the end of life.
Clinician–patient communication and advance care planning
Professional societies and other organizations should develop standards for clinician–patient communication and advance care planning that are measurable, actionable, and evidence-based. Payers
and delivery organizations should adopt these standards and their
supporting processes and integrate them into assessments, care
plans, and the reporting of health care quality.
Professional education and development
Educational institutions, credentialing bodies, accrediting boards, state
regulatory agencies, and health care delivery organizations should
establish appropriate training, certification, and licensure requirements to strengthen the palliative care knowledge and skills of all
clinicians who care for patients with advanced serious illness who
are nearing the end of life.
Policies and payment systems
Federal, state, and private insurance and health care delivery programs should integrate the financing of medical and social services
to support the provision of high-quality care consistent with patients’
values, goals, and informed preferences. Insofar as additional legislation is necessary to implement this recommendation, the administration should seek and Congress should enact such legislation. The
federal government should require public reporting on quality measures, outcomes, and costs and encourage private payers and delivery systems to do the same.
Public education and engagement
Civic leaders, public health and other governmental agencies, community-based organizations, faith-based organizations, con
sumer
groups, health care delivery organizations, payers, employers, and professional societies should engage their constituents and provide factbased information to encourage advance care planning and informed
choice based on individuals’ needs and values.
* The full report is available at www.iom.edu/endoflife.
of surveyed physicians, say they’d
like to die at home and avoid highintensity care and hospitalization.
Yet their wishes are too frequently
overridden by the physicians caring for them, who undertake
more medical interventions than
patients desire. Physicians also
sometimes find themselves re596
sponding to the wishes and demands of patients’ families who
want more medical therapy than
medical providers believe is indicated or beneficial. In a study examining the care of more than
848,000 people who had died in
2000, 2005, or 2009 while covered by fee-for-service Medicare,
Teno et al. noted that the rate of
acute care hospitalization decreased from 32.6% in 2000 to
24.6% in 2009 but that use of intensive care in the last month of
life increased from 24.3% to
29.2%.3 Although hospice use increased during this period,
28.4% of the decedents studied
had used hospice for 3 days or
less in 2009.
Complex social, cultural, economic, geographic, and health
system factors and impediments
contribute to this discordance between how doctors treat their patients and how they themselves
(and the majority of surveyed
Americans) wish to be cared for
at the end of life. We are experiencing the greatest demographic
shift in U.S. history. According
to current projections, by 2030,
20% of Americans will be more
than 65 years old. Cultural diversity is also increasing, as is the
percentage of people with one or
more chronic illnesses. It is therefore imperative that the medical
community listen to patients and
recognize that their end-of-life
preferences may change over time,
especially as longevity increases.
The goal should be to help people receive care in keeping with
their personal preferences as they
near the end of life.
In Dying in America: Improving
Quality and Honoring Individual
Preferences near the End of Life, an
Institute of Medicine (IOM) committee (which we cochaired) concluded that the U.S. health care
system is poorly designed to
meet the needs of patients and
their families at the end of life
and that major changes are needed. We need to begin by fostering patients’ ability to take control of their quality of life
throughout their life and to
choose the care they desire near
the end of life.4 The committee
PE R S PE C T IV E
recognized that these goals
could be achieved only by making major changes to the education, training, and practice of
health care professionals, as well
as changes in health care policy
and payment systems, Simulta
neously, individual and public
education would have to be radically reformed to reshape expectations and allow patients and
clinicians to have meaningful discussions about end-of-life planning (see box).
The IOM committee concluded
that “federal, state, and private insurance and health care delivery
programs should integrate the financing of medical and social
services to support the provision
of quality care consistent with the
values, goals, and informed preferences of people with advanced
serious illness nearing the end of
life.” More specifically, the committee recommended that insofar
as additional legislation is required
to allow for such financing, relevant laws should be enacted (e.g.,
authorization of payments for services delivered in ambulatory or
home settings rather than only
in inpatient settings) and that the
federal government should “require public reporting on quality
measures, outcomes, and costs
regarding care near the end of
life . . . for programs it funds
or administers (e.g., Medicare,
Medicaid, the Department of
Veterans Affairs)” and encourage
other U.S. payment and delivery
systems to follow suit. We believe
that physicians can and should
work with their professional organizations to advocate for these
changes — but rather than waiting for new legislation, they can
take action now, in part by setting aside time to encourage patients to express their preferences regarding end-of-life care.
Physician practices can also
organize their clinical services
so as to provide seamless, highquality, patient- and family-centric care that is consistently available to their patients, especially
those who have advanced serious
illness or are nearing the end of
life. Even by simply providing patients with a consistent and accessible place to call when they
need help, physicians can avert unnecessary trips to the emergency
department or another acute care
setting where patients’ individual
preferences may not be known or
honored. Becoming more accessible in this way improves the
quality of care and should reduce
unnecessary utilization of expensive medical treatments.
Physicians can also work to
ensure that their patients have access — in all care settings — to
skilled palliative care or, when
appropriate, hospice care. We believe that basic palliative care
skills should be part of the knowledge base of all physicians caring for people with advanced serious illness or near the end of
life. Physicians can also seek out
collaboration, whenever possible,
with skilled palliative care specialists, whether doctors, nurses,
social workers, or clergypersons,
to ensure the best possible care
of their patients. It has been
demonstrated that when palliative care is combined with active
treatment for patients with advanced cancer, the quality and
duration of life are enhanced.5
All this care should be coordinated, and handoffs should be
avoided at critical junctures for
patients, such as when they first
encounter a chronic illness or a
life-threatening disease.
Ideally, physicians would initiate discussions about advance directives with their patients at key
milestones throughout their lives
— perhaps when they get a driv-
er’s license, get married, begin a
new job, relocate, or become eligible for Medicare — not just
when advanced illness or death is
imminent. Many physicians need
to learn how to conduct these
conversations respectfully and
successfully. Physicians can then
make their patients’ preferences
known to all members of the
health care team. Physicians
should be compensated for the
time required to have these discussions — a change they can
prod the government and other
payers to make.
Changing the culture in these
ways will require intervention at
all stages of physicians’ education.
Physician educators can develop
new models of teaching (including the use of simulation) for
students, residents, and fellows.
But physicians can also learn and
teach about compassionate patient
care in their practice settings
and communities. They can then
contribute to public dialogues
about end-of-life issues in their
communities and religious groups
— working especially to help to
dispel misinformation.
Physicians’ experiences with
medical care and dying patients
have helped crystallize their desires for their own end-of-life
experiences. As Dying in America
makes clear, physicians should
now practice what they profess,
to ensure that their patients have
the same options that they themselves, and a majority of Ameri
cans, would choose and that they
honor patients’ preferences at the
end of life.
Disclosure forms provided by the authors
are available with the full text of this article
at NEJM.org.
Dr. Pizzo is a professor of pediatrics and of
microbiology and immunology and former
dean at Stanford University School of Medicine, Stanford, CA; and Mr. Walker is a former comptroller general of the United
States.
597
PERS PE C T IV E
1. Gallo JJ, Straton JB, Klag MJ, et al. Lifesustaining treatments: what do physicians
want and do they express their wishes to
others? J Am Geriatr Soc 2003;51:961-9.
2. Periyakoil VS, Neri E, Fong A, Kraemer H.
Do unto others: doctors’ personal end-of-life
resuscitation preferences and their attitudes
toward advance directives. PLoS One 2014;
9(5):e98246.
3. Teno JM, Gozalo PL, Bynum JPW, et al.
Change in end-of-life care for Medicare beneficiaries: site of death, place of care, and
health care transitions in 2000, 2005, and
2009. JAMA 2013;309:470-7.
4. Institute of Medicine. Dying in America:
improving quality and honoring individual
preferences near the end of life. Washington,
DC: National Academies Press, 2014.
5. Smith TJ, Temin S, Alesi ER, et al.
American Society of Clinical Oncology pro
visional clinical opinion: the integration of
palliative care into standard oncology care.
J Clin Oncol 2012;30:880-7.
DOI: 10.1056/NEJMp1413167
Copyright © 2015 Massachusetts Medical Society.
Finding the Right Words at the Right Time — High-Value
Advance Care Planning
Justin Sanders, M.D.
Related article, p. 595
W
hen Ms. C. died, I was sad
but not surprised. I had
met her 4 years earlier, when I
was an intern and she was the
first patient who identified me
as “my doctor.” She did so enthusiastically, asking the inpatient
medical teams who frequently
cared for her to run every decision by me. As a trainee, and
given her complex needs, I found
those requests both absurd and
overwhelming. By 65 years of age,
Ms. C., a lifelong smoker, had
coronary artery disease, atrial
fibrillation, diabetes, and chronic obstructive pulmonary disease
(COPD) complicated by pulmonary hypertension. During the
time I knew her, she was hospitalized at least every 3 months
for complications of one or another of her chronic conditions.
The only thing she hated more
than the hospital was the panic
induced by uncontrolled dyspnea,
chest pain, or palpitations —
the panic that led her to dial
911. When she came into the
clinic for follow-up, she’d tell
me that she never wanted to go
back. I would check to make sure
she understood her medication
changes. She would ask about
my family. I would plead with
her to quit smoking. A gregarious
Latina, she always shouted “I love
you” as I walked out of the room.
598
I remember when Ms. C.’s cardiologist, who was as close to
her as I was, told me he was concerned that she might not live
another year: her arrhythmia had
become more difficult to control.
She had no advance directive. He
suggested that I speak with her
about it, and I said I’d try to find
a good time. I never did.
Some months later, as a newly
appointed attending, I returned
from a vacation to an e-mail informing me of Ms. C.’s death. She
had died in the intensive care unit
after an unsuccessful attempt at
cardiopulmonary resuscitation. I’m
pretty sure that’s not what she
would have wanted, but I couldn’t
say for certain. I stared at my
computer screen, feeling the leaden weight of a missed opportunity and a sense of profound disappointment in myself. I felt that
I had failed one of my first and
favorite patients.
Since becoming a palliative
care doctor some years later, I’ve
thought many times about Ms. C.
and the consequences of my own
and others’ inaction. And these
missed opportunities have become
a topic of national conversation.
Last September, the Institute of
Medicine (IOM) released a report
entitled Dying in America, in which
it recommends measures to improve end-of-life care through,
among other strategies, better
advance care planning (ACP).1
Specifically, it recommends the
development of “standards for
clinician–patient communication
and advance care planning that
are measurable, actionable, and
evidence based” and that these
standards be tied by payers and
professional societies to “reimbursement, licensing, and credentialing” (see Perspective article by
Pizzo and Walker, pages 595–598).
If promoting ACP discussions
were as simple as asking or paying physicians to have them, Dying in America might not have been
necessary. These discussions are
difficult, and for multiple reasons:
perceived difficulty of prognostication, uncertainty about how
best to communicate with patients and families with diverse
communication needs, and inadequate time to have them — not
to mention the troubling emotions that talk of death raises for
both patients and physicians.2
During our medical education,
discussions of end-of-life care receive minimal, if any, attention.
In response to deficiencies in
physician communication about
end-of-life care preferences, policymakers, patient advocates, and
payers have endeavored to move
ACP out of physicians’ hands,
from the clinic to the telephone