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From the Department of Medicine, Cardiovascular Division, Brigham and
Women's Hospital, Harvard Medical School, Boston, Mass.
Correspondence to Lynne Warner Stevenson, MD, Brigham and Women's Hospital/Cardiovascular Division, 75 Francis St, Boston, MA 02115.
In
Celtic mythology, there are pieces of ground considered to be "thin
places" where the measured world comes closest to the infinite. Such
places may have been set apart for burial grounds and other ritual
sites. The Celtic phrase describing them derives from the Latin
limen, a threshold or frontier where 2 countries meet (the
root of "subliminal").1 As physicians, we
bear the privilege of escorting patients and families over the thin
places. Krumholz and his colleagues2 have
ventured to this border to provide valuable information as we ponder
our responsibilities there.
Rights of Resuscitation
Once considered to be heroic, resuscitation has become routine.
Communities are trained in CPR, defibrillators are on hand at many
sporting events, and paramedics provide full advanced cardiac life
support services in the home. The majority of patients admitted to
hospitals seek survival, regardless of the severity of chronic illness.
In 1 study, 90% of hospitalized patients expressed preference for
resuscitation if their admission level of function could subsequently
be restored.3 Of patients older than 55 years who
had been discharged after an intensive care unit stay, 74% were
certain that they would undergo another intensive care unit stay to
prolong survival for as little as 1 month of additional
life.4 In the current study, only 23% of
patients stated that they did not wish resuscitation, and 40% of such
patients subsequently changed their minds in favor of
resuscitation.
As patients live longer with chronic illness, death offers a welcome
end to suffering for some, who should be allowed to take that journey
unhindered. The majority of patients and their families appear to be
anxious primarily to avoid prolonging a vegetative existence or
dependency on mechanical ventilation.4 5 6 Fear of
constant severe pain is also a common concern. The frequency of
do-not-resuscitate (DNR) orders has increased over the last
decade,6 even before the Patient
Self-Determination Act of 1991, which requires hospitals to develop
written policies concerning advance directives, to seek and record
information regarding advance directives from all admitted patients, to
give patients written information on such directives, and to educate
the staff and community.5
Resuscitation in Heart Failure
The number of hospitalizations for heart failure far exceeds those
for AIDS and almost equals the number for all types of cancer combined.
The prognosis from the time of diagnosis for patients with heart
failure has been compared with that for some types of cancer and for
patients hospitalized with AIDS. Unrelieved breathlessness from heart
failure can be oppressive and debilitating. Despite these similarities
to other terminal illnesses, DNR orders are less common in heart
failure; in 1 large experience,7 such orders were
written for 5% of patients admitted with heart failure, 47% of
patients with unresectable malignancy, and 52% of patients with
AIDS.
Does the lower rate of DNR orders for heart failure indicate inadequate
communication with patients with heart failure, as has been suggested?
Multiple differences between heart failure and other chronic diseases
may profoundly influence patient and physician decisions regarding
resuscitation during hospitalization. For many patients, the course of
heart failure is one of long periods of stability interrupted by brief
episodes of decompensation. During those episodes, both the distress
and relief can be dramatic. Many of the factors leading to
hospitalization for heart failure are reversible, allowing most
patients to regain and maintain freedom from the congestion that limits
daily activity.8 9 Independence and the ability
to care for themselves rank highly in patients' desires for
resuscitation and may explain in part the low rate of DNR orders in
heart failure compared with other diseases.10
Hospitalization for heart failure does not usually herald inexorable
decline, as indicated both by the low in-hospital mortality rate
(3.4%) compared with more than 26% for patients with other chronic
diagnoses11 and by the lower 6-month mortality
rate (22.5% compared with more than 50%). Even a cardiac arrest in
the hospital does not portend end-stage disease but can occur at any
time in heart failure, a condition associated with electrically
unstable myocardium, rapid electrolyte fluxes during
diuresis, and potentially arrhythmogenic drugs.
Comprehensive management of heart failure is recommended to include
education of patients and, equally importantly, their families about
what to expect as the end of life.12 Most death
in heart failure is unheralded by narcotics, hospice care, or bedside
reconciliation. In the Vasodilator in Heart Failure (V-HeFT) trials,
64% of the cardiac deaths occurred suddenly, and only 30% of those
sudden deaths were preceded by any reported worsening of cardiac
symptoms.13 Most patients with heart failure and
their families fear unexpected death more than unwanted prolongation of
life.
Different DNR Decisions
The study in this issue of Circulation highlights
differences between patients with heart failure and their hospital
physicians regarding resuscitation. Any study of this question faces
multiple limitations regarding the timing and relevance of interviews
for study purposes, which the authors have enumerated well. In
addition, the question to the patients in this study emphasized the
breathing machine, which may trigger particular reluctance from
patients whose greatest fear is "being a vegetable." From
physicians, concern has been raised regarding the impact of a DNR order
on intensity of other care,14 an example being
intravenous inotropic infusions, which in some institutions
are given only in critical care units. Physicians may worry that a DNR
order could be translated as "Do not treat." Although ostensibly a
binary decision, plans regarding resuscitation may be further refined
in the chart as "Do not intubate" and "chemical code only," or
in verbal communication as "slow code" or "short code." There
is no easy way to analyze these local variations.
Even with these methodological constraints, the degree of concordance
between patients and physicians regarding resuscitation in heart
failure is encouraging. Physician agreement with the resuscitation
decisions was present for 76% of all patients in this study and
was 84% for patients who did not subsequently change their mind,
suggesting that physicians in some cases have a more accurate
perception of the patient's ultimate wishes than the patient himself
when suffering from acute decompensation. The concordance was greater
than that described for the Study to Understand Prognoses and
Preferences for Outcomes and Risks of Treatments (SUPPORT) population
with other diagnoses, although the reported frequency of explicit DNR
discussion was actually lower.11
In contemplating DNR decisions, both patients and their physicians were
strongly influenced by the perceived prognosis of the disease. The
greater experience from which cardiologists assess and communicate this
prognosis may have contributed to the 44% lower rate of
patient-physician discordance for cardiologists compared with
noncardiologists. A major factor determining the physicians' decisions
regarding resuscitation were their own preferences given the same
situation. This is not necessarily a shortcoming. The instinct to
imagine ourselves sharing the fate of others seems in fact one to be
fostered.
Direct physician-patient discussion regarding the details of
resuscitation orders has been suggested as a necessary rite for
compassionate care of patients hospitalized with chronic
illness.11 In this study of patients with heart
failure, slightly less than half of patients not exposed to such
discussion responded that they would have preferred one. There is
insufficient information regarding how patients feel after being asked
to decide about resuscitation. Forced contemplation of fatal events may
increase anxiety, as was demonstrated for the patients themselves in a
controlled study of cardiopulmonary resuscitation training for
families of patients at high risk for cardiac
events.15 The perceived responsibility to
"decide" can also create discomfort within families both at the
time and after a death, which would be more comfortably remembered as a
decision out of their hands. In the larger SUPPORT study, both patients
and their families receiving the intervention to improve discussion of
end-of-life issues reported increased levels of pain during the
following week, with no improvement in other measured
outcomes.11
It is noteworthy that those physician-patient pairs who
specifically discussed resuscitation were no more likely than others to
agree, and furthermore that physician instruction focused on specific
DNR discussion in Part I of the SUPPORT study did not influence
agreement either.2 11 Despite the relative rarity
of direct discussion about DNR orders, the patient's preference not to
be resuscitated was found here to be a significant predictor of the
physician's perception. It seems likely that the essence of the
patient's preferences may often be heard or solicited by an alert
physician without specifically mentioning a breathing machine. There
are multiple approaches to such communication that may result in the
concordance of patient desire and physician care.
Impact of Current Decisions
Dr Krumholz and his colleagues have provided unique information
from which to model the effect of strategies for resuscitation
decisions. Arrest rates were similar in the 721 patients who preferred
resuscitation and in the 215 who initially stated they did not want
resuscitation (4% versus 5%). We can examine the impact of various
strategies by using this data and a few assumptions
(Figure
One strategy would be to ask all patients about their preference early
during hospitalization and to abide by that preference. One potential
"cost" of this strategy would be the failure to attempt
resuscitation in those whose ultimate decision, although not their
initial one, would have been for resuscitation. Another immeasurable
"cost" is the anxiety of 894 hospitalized patients and perhaps
their families, who were urged to make decisions regarding cardiac
events that did not occur. This would have to be weighed against a
potential benefit, also unmeasured, for those patients who might be
relieved that their preferences were noted.
Another strategy would be to resuscitate everyone. From this
experience, this would be predicted to result in 7 patients undergoing
resuscitation who consistently preferred no resuscitation.
The weight of regret for a decision error is lighter for an unwanted
resuscitation than for a failure to resuscitate someone who wants
resuscitation. Based on this, a selective strategy would be to discuss
resuscitation during hospitalization only with those patients whom the
physician, lacking a prior chance to discuss resuscitation, believes
are likely to prefer not to be resuscitated. This would potentially
have caused 4 patients to be resuscitated "incorrectly." As only 1
of 6 patients in this experience survived unwanted resuscitation, the
actual "risk" of unwanted survival during heart failure
hospitalization would be only 0.07%, a risk lower than that for
complications of common cardiovascular procedures.
The strategies described above assume that the patient does not
volunteer any information regarding prior resuscitation decisions.
Although written advance directives are still relatively rare, patients
in the current study who did not desire resuscitation were twice as
likely to have discussed the issue specifically with their
physicians.
The models of DNR decision-making calculations do not assign values to
different scenes of death. For patients without expected recovery of
cognitive function, there is increased consensus and comfort with DNR
orders.6 For other patients, we are at times
exhorted to curtail our resuscitative efforts in order to ensure
"death with dignity." Gerard Guiraudon, the noted Canadian cardiac
surgeon, was overheard to answer a group of young colleagues advocating
dignity, "I would feel honored if the end of my life were attended by
a team of highly skilled professionals endeavoring to prolong it."
The rites of resuscitation are not the last. Regardless of the details
of the final days, life and its end acquire a dignity that physicians
can neither bestow nor withdraw.
Future Resuscitation for Heart Failure
In a ideal circle of care, the issues of prognosis and preference
for resuscitation would initially be addressed in the outpatient
setting, as recommended by multiple physician
groups5 12 16 and revised as needed during
hospitalization. The urgency of this discussion would be greater for
those patients with more severe disease, those patients whom the
physician believes would not want resuscitation, and perhaps for
elderly patients, suggested by this study to have less predictable
preferences. Interpretation of such discussion should be colored by the
mood of the patient, shown to be a major factor in unstable preferences
regarding resuscitation.17 The value of
continuity in making these decisions must be considered as we
anticipate the impact of dividing care between clinic physicians and
"hospitalists" for a chronic illness such as heart
failure.18
The decisions made by doctors regarding DNR orders have not determined
many outcomes in heart failure, in which the preference for
resuscitation is high and the in-house arrest rate is low (4% in this
study). Death from heart failure still occurs out of the hospital in
the majority of cases.13 One important issue for
improving future care, beyond the scope of the current study, is how to
make information from advance directives available to paramedic
response teams and emergency rooms.5
Sudden death strikes as a double-edged sword in heart failure. It can
fell patients at a time when they might otherwise have enjoyed longer
productive lives. In the other direction, sudden death offers
relief for patients whose progressive symptoms otherwise threaten to
become crippling, a feature that has until now lightened the weight of
this disease for the patient, family, and physician.
The advent of effective devices to treat rhythms responsible for sudden
death in heart failure will diminish the dual effects of sudden death.
Almost 40 000 cardioverter-defibrillators will be implanted this year
in the United States alone, with an estimated 20% increase yearly for
present indications. Currently, these devices are intended for
patients in whom tachyarrhythmias are not incessant and
heart failure is sufficiently compensated that a fatal dysrhythmia
would be unwelcome.19 Device inactivation is now
occasionally requested by patients with intractable arrhythmias
causing repeated shocks, or patients with heart failure symptoms that
become intolerable. Such requests will become more frequent, however,
as heart failure remains a disease of progression, despite the
favorable impact from optimal use of angiotensin-converting
enzyme inhibitors and ß-adrenergic blocking agents.
Appropriate concerns have been raised by the SUPPORT study, but current
decisions regarding resuscitation have been more critical for other
terminal illnesses than for heart failure, in which the majority of
deaths occur out of the hospital. When patients carry the tools of
resuscitation inside them, these decisions will mandate more active
intervention. Although internal defibrillation may be more difficult in
settings of hemodynamic compromise, immediate success
remains likely, whether or not it is welcome. Farther ahead, even
greater challenges will be presented by the relentless
performance of implantable circulatory support devices.
Although we do not yet know the best way to encourage effective
communication between patients and physicians, the current study
provides a framework that will help us to address the more complex
decisions arising in the future. Patients, families, and physicians
will participate to rewrite the natural history of heart failure. As we
lean to break new ground beside the thin places, we shoulder more
responsibility to preserve them.
Acknowledgments
I would like to thank Douglas L. Mann, Associate Editor, whose
eloquent comments influenced my opinions on this issue.
Footnotes
The opinions expressed in this editorial are not necessarily those of the editors or of the American Heart Association.
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[Order article via Infotrieve]
© 1998 American Heart Association, Inc.
Editorials
Rites and Responsibility for Resuscitation in Heart Failure
Tread Gently on the Thin Places
Key Words: heart failure • resuscitation • death, sudden • Editorials
).
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Figure 1. Pie charts modeling the limited impact of strategies
regarding resuscitation orders for a heart failure population with high
preference for resuscitation and low risk of cardiac arrest in
hospital. Top chart depicts the strategy to ask all patients their
preferences early during hospitalization regarding resuscitation and to
accept those preferences. Middle chart depicts strategy to resuscitate
all patients. Bottom chart depicts strategy to discuss resuscitation
only with patients believed by the physician likely to prefer not to be
resuscitated (hatched area), to accept their decisions, and resuscitate
all other patients. These calculations do not take into account
patients who present advance directives or volunteer their
preferences. Data are derived from the study of Krumholz et
al2 and the following assumptions: (1) All patients
initially not wanting resuscitation had equal chance of having an
arrest (5%) and equal propensity to change their mind in favor of
resuscitation (40%). (2) All patients wanting resuscitation had equal
chance of having an arrest (4%). (3) Patients unsure of their
preferences were considered to want resuscitation. (4) Patients
desiring resuscitation during either of 2 interviews were considered to
desire resuscitation.
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