the authors and do not reflect the official policy or position of the
Department of the Army, the Department of Defense, or the
United States Government.
Correspondence to: Charles W. Callahan, DO, LTC, MC, USA,
FCCP, 1 Jarrett White Rd, Honolulu, HI 96859-5000; e-mail:
[email protected]
References
1 Shelly PB. Music when soft voices die. In Quillar-Couch A,
ed. The Oxford book of English verse. New York, NY: Oxford
University Press, 1955; 733
2 Mandelberg A, Chen E, Noviski N, et al. Nebulized wet
aerosol treatment in the emergency department: is it essential? Chest 1997:1501–1506
3 Fok TF, Lam K, Ng PC, et al. Delivery of salbutamol to
nonventilated preterm infants by metered-dose inhaler, jet
nebulizer and ultrasonic nebulizer. Eur Respir J 1998; 12:
159 –164
4 Gappa M, Gartner M, Poets CF, et al. Effects of salbutamol
delivery from a metered dose inhaler versus jet nebulizer on
dynamic lung mechanics in very preterm infants with chronic
lung disease. Pediatr Pulmonol 1997; 23:442– 448
5 Closa RM, Ceballos JM, Gomez-Papi A, et al. Efficacy of
bronchodilators administrated by nebulizer versus spacer
devices in infants with wheezing. Pediatr Pulmonol 1998;
26:344 –348
6 Yuksel B, Greenough A. Comparison of the effects on lung
function of two methods of bronchodilator administration.
Respir Med 1994; 88:229 –233
7 Kerem E, Levison H, Schuh S, et al. Efficacy of albuterol
administered by nebulizer versus spacer device in children
with acute asthma. J Pediatr 1993; 123:313–317
8 Chou KJ, Cunningham SJ, Cram EF. Metered-dose inhalers
with spacers vs nebulizers for pediatric asthma. Arch Pediatr
Adolesc Med 1995; 149:201–205
9 Lin YZ, Hsieh KH. Metered dose inhaler and nebuliser in
acute asthma. Arch Dis Child 1995; 72:214 –218
10 Parkin PC, Saunders NR, Diamond SA, et al. Randomized
trial spacer vs nebulizer for acute asthma. Arch Dis Child
1995; 72:239 –240
11 Williams JR, Bother JP, Swanton RD. Delivery of albuterol in
a pediatric emergency department. Pediatr Emerg Care
1996; 12:263–267
12 Amirav I, Newhouse MT. Metered-dose inhaler accessory
devices in acute asthma: efficacy and comparison with nebulizers; a literature review. Arch Pediatr Adolesc Med 1997;
151:876 – 882
13 Schuh S, Johnson DW, Stephens D, et al. Comparison of
albuterol delivered by a metered dose inhaler with spacer
versus a nebulizer in children with mild acute asthma.
J Pediatr 1999; 135:22–27
14 Newhouse MT. Asthma therapy with aerosols: are nebulizers
obsolete? A continuing controversy [editorial]. J Pediatr 1999;
135:5–7
15 Idris AH, McDermott MF, Raucci JC, et al. Emergency
department treatment of severe asthma: metered-dose inhaler plus holding chamber is equivalent in effectiveness to
nebulizer. Chest 1993; 103:665– 672
16 Calacone A, Afilaio M, Wolkove N, et al. A comparison of
albuterol administered by metered does inhaler (and holding
chamber) or wet nebulization in acute asthma. Chest 1993;
104:835– 841
17 Newhouse MT. Emergency department management of lifethreatening asthma: are nebulizers obsolete [editorial]? Chest
1993; 103:661– 662
18 Tal A, Golan H, Grauer N, et al. Deposition pattern of
radiolabeled salbutamol inhaled from a metered-dose inhaler
by means of a spacer with mask in young children with airway
obstruction. J Pediatr 1996; 128:479 – 484
19 Wildhaber JH, Dore ND, Wilson JM, et al. Inhalation therapy
in asthma: nebulizer or pressurized metered-dose inhaled
with holding chamber? In vivo comparison of lung deposition
in children. J Pediatr 1999; 135:28 –33
20 Fok TF, Monkman S, Dolovich M, et al. Efficacy of aerosol
medication delivery from a metered dose inhaler versus jet
nebulizer in infants with bronchopulmonary dysplasia. Pediatr Pulmonol 1996; 21:301–309.
21 Nelson WE, Vaugn VC, McKay RJ. Textbook of pediatrics.
9th ed. Philadelphia. PA: W.B. Saunders, 1969; 502–506
22 Vaugn VC, McKay RJ, Behrman RE. Nelson textbook of
pediatrics. 11th ed. Philadelphia, PA: W.B. Saunders, 1979;
677– 635
23 Behrman RE, Vaugn VC, Nelson WE. Nelson textbook of
pediatrics. 13th ed. Philadelphia, PA: W.B. Saunders, 1987;
495–501
24 Zar HJ, Brown G, Donson H, et al. Home-made spacers for
bronchodilator therapy in children with acute asthma: a
randomized trial. Lancet 1999; 354:979 –982
25 Callahan C, Peterson D. Treatment of acute asthma in a field
environment using albuterol and a large volume spacer. Mil
Med (in press)
26 Erickson SR, Horton A, Kirking DM. Assessing metered-dose
inhaler technique: comparison of observation vs patient selfreport. J Asthma 1998; 35:575–583
27 Boccuti L, Celano M, Geller RJ, et al. Development of a scale
to measure children’s metered-dose inhaler and spacer technique. Ann Allergy Asthma Immunol 1996; 77:217–221
28 Tsang KW. Improper use of MDI’s: education is the key
[letter]. Chest 1991; 114:946
29 Tsang KWT, Lam WK, Ip M. Inability of physicians to use
metered-dose inhalers. J Asthma 1997; 34:493– 498
Time To Move Advance Care
Planning Beyond Advance
Directives
atients fear losing their lives to the medical
P system.
They dread being trapped in insensitive
medical institutions, tethered to inhumane machines, robbed of personal privacy, and subjected to
the accompanying indignities. Driven by this specter,
many patients want to make decisions to govern their
future treatment—a process called advance care
planning. For over 30 years, the best-known means
of advance care planning has been advance directives. By signing these legal documents, patients can
request or refuse specific treatments and can choose
proxies for times of future incapacity. Advance directives promise what many patients crave most for
the end of life— control over treatment.1
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Editorials
Researchers have examined patients’ knowledge
ofand use of advance directives. Now, in this issue of
CHEST (see page 1474), Heffner and Barbieri contribute an interesting new study to that literature.
They report that most patients at 14 cardiac rehabilitation programs across the United States presupposed the need for life support in the future and
wanted some control over that treatment. The authors document the patients’ specific wishes about
the use of intubation and mechanical ventilation and
their attitudes about advance directives. Most of
these patients knew of advance directives, wanted
more information, and preferred to get that information from their lawyers, families, physicians, or cardiac rehabilitation programs. The authors find, however, that few patients had discussed their attitudes
about life support or advance directives with their
physicians. The authors conclude that cardiac rehabilitation programs provide a good opportunity to
promote advance directives to a receptive population.
Acting on this conclusion would entail substantial
expenditures of money, time, and effort. Likely
impact must justify the costs. Yet despite considerable promise, extensive publicity, and many attempts
to promote their use, advance directives have had
disappointingly little impact on end-of-life care.2
Medicine must ask the hard question. Are advance
directives up to the task?
The advance directive concept originated in the
late 1960s. Galloping innovation in medical technology, including mechanical ventilators, hemodialysis,
and ICUs had proved a mixed blessing. The new
technologies saved lives, sometimes dramatically, but
often took a great financial, physical, and emotional
toll. While always technically permitted by law to
refuse any therapy, patients had found it difficult to
press their refusals in the crisis. Many patients could
not speak at the time; others were too confused or
emotionally overwhelmed to resist the medical juggernaut. Above all, many patients wanted to avoid
any treatment that would leave them “vegetables.”
Advance directives seemed the logical answer to
the predicament,3 so in 1974, the Euthanasia Education Council published the first (though not yet
legally approved) directive, called a living will. The
Karen Quinlan case of 1975–76, in which physicians
and a hospital refused the parents’ request to stop
the ventilator of a young patient in a vegetative state,
stoked patients’ fears of entrapment by new lifesupport technologies.4 In response, state legislatures
quickly passed natural death acts, which legalized
advance directives for refusing what seemed to be
“unnatural” life support under terminal conditions.
By the mid-1980s, when natural death act directives
had proved too restrictive and cumbersome to be of
much clinical use, first California and then other
states created durable powers of attorney—advance
directives that allowed patients to choose proxies for
times of future incapacity. In 1990, the United States
Supreme Court allowed Missouri to require “clear
and convincing” evidence of the vegetative Nancy
Cruzan’s wishes before approving that her feedings
be stopped.5 Nonetheless, of the many patients likely
to want no artificial life support, few were likely to
meet such a high evidential standard for withholding
it because few had signed advance directives. The
most obvious explanation for the low completion
rates was that people did not know about advance
directives. As a result, Congress passed the Patient
Self-Determination Act of 1990, requiring healthcare institutions to inform patients about advance
directives on admission. Subsequent publicity, including syndicated newspaper columns by Ann
Landers and Abigail Van Buren and professional
practice guidelines from health maintenance organizations, has promoted advance directives to both
patients and physicians.
Despite such efforts, advance directives have
failed consistently to live up to their promise and
publicity. Patients do not sign advance directives,
and physicians do not use them to guide terminal
care. Except for highly selected populations of patients,6 – 8 completion rates for advance directives still
run only 4 to 25%.1,9 –15 Clever interventions to
inform patients about advance directives, to distribute the forms widely, and to encourage their completion have had disappointing results.16,17 Good
intentions notwithstanding, many patients may not
be able to bring themselves to plan for terminal
illness or to sign documents that may cause early
death.
Advance directives may also not fit today’s complex, frantic medical care. Stretched to the limit and
pressed to focus on reimbursed activities, many
physicians relegate to inexperienced or poorly
trained admissions clerks the responsibility for informing patients about advance directives. Even if
those discussions occur, patients may be too distracted to hear them during the procedural deluge of
an institutional admission. Furthermore, families
and physicians—patients’ usual advocates in medical
crises—rarely ask patients their wishes beforehand
or anticipate those wishes accurately.18 –20 In addition, the finality of stopping life support intimidates
families and physicians and makes them hesitate to
invoke advance directives until patients are absolutely, hopelessly dying. The vagueness of most
advance directives only heightens the discomfort of
acting on them. And physicians may unwittingly use
rigid approaches to terminal care that resist accommodation to patients’ specific wishes.21
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These experiences dictate a new perspective on
advance directives. Long considered the essence of
advance care planning, advance directives might be
better considered as the first step in its evolution.
The time seems right for medicine to learn the
lessons from advance directives and to move on to
better methods of advance care planning.
This surprising conclusion has important implications for medical research and practice. While no
longer holding the promise they once had, advance
directives still provide research with a convenient,
concrete tool for learning patients’ attitudes about
dying. Such research may identify patients who may
be emotionally prevented from considering their
deaths; advance care planning may be impossible for
these patients. Such research may also uncover
correctable knowledge deficits, communication
problems, bureaucratic obstacles, or distorted expectations that hinder other patients in performing
advance care planning. Moreover, this research may
determine the best concepts, terms, and styles for
patients and physicians to use in discussing terminal
care. In short, the research should mine the vast
advance directive experience while it is still fresh,
but should aim to replace advance directives with
even better methods of advance care planning.
Rigorous development and dissemination of new
advance care planning methods will require some
years. What should clinicians do in the meantime? I
suggest one common-sense method that places physician and patient at the center of advance care
planning. This method has proven so successful in
my practice that I teach it to my students. In outline,
this method requires the physician to engage the
patient directly in advance care planning. The physician helps the patient define for himself or herself
acceptable functional outcomes and treatments, but
the physician retains the discretion necessary in a
crisis to choose from among the treatments acceptable to the patient those likely to accomplish the
patient’s outcome goals.22
Ideally, this method begins in the office long
before a medical crisis arises. Advance care planning
requires dedicated time and special preparation, and
physicians should realize the need to begin the
process promptly with outpatients who have congestive heart failure, cancer, or other potentially lifethreatening illnesses, and with those who have progressive mental deterioration. The full process
usually spans several visits. At the first visit, the
physician describes the importance of the patient’s
say in future treatment, expresses genuine interest in
learning the patient’s wishes, and promises to follow
those wishes to the extent possible. The physician
offers printed information to introduce the concept
of advance care planning, and encourages the patient
to discuss this information with close family members before the physician and the patient actually
perform advance care planning. The physician urges
the patient to bring his or her likely proxies to a
future visit designated for completing advance care
plans.
At that visit, the physician devotes as little contact
time as possible to usual patient-care activities and
concentrates instead on advance care planning. The
physician opens the discussion by asking the patient
and proxies for reactions to the printed information.
After addressing the reactions, the physician tries to
help the patient define his or her views of acceptable
treatment outcomes. These views should be cast in
specific, functional terms. The physician asks what
the patient enjoys doing, how the patient spends his
or her time, or what makes life worth living for the
patient. The physician interprets the answers as
functional states that the patient would find acceptable as treatment outcomes. These states become
goals for treatment. Because most states that patients
mention involve quite high-level functioning, the
physician may need to probe for the acceptability of
lower functional states. Will the avid outdoorsman
accept life confined to the house? Will the foreign
language teacher accept life after laryngectomy?
Next, the physician tries to define the patient’s
tolerances for specific treatments. Patients understand best those treatments they have experienced.
So the physician asks the patient to describe past
treatment experiences in the hospital or ICU, and his
or her reactions to them. The physician should avoid
asking what to do if the patient’s heart or lungs stop
working, because a valid answer requires more understanding of resuscitation than most patients have.
Finally, the physician asks whether the patient is a
risk taker in important health decisions, that is,
preferring the long-shot, riskier, but potentially higher-yield options or the more likely, safer, but more
limited-yield options. Throughout this process, the
physician documents the patient’s answers in a way
that ensures ready access to them in the future. The
physician and the patient must realize that significant
life events may change a patient’s answers and, thus,
necessitate additional discussions in the future.
A health-care system dedicated to the interests
and wishes of patients requires some form of advance care planning. Physicians are the key to such
planning, and they must not shrink from this admittedly hard, time-consuming responsibility. In fact,
physicians must commit to learning important listening skills,17,23,24 to conducting the process of advance
care planning despite discomfort for themselves, and
to implementing patients’ wishes as faithfully as
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Editorials
possible.21 Above all, physicians must not cling to
advance care planning methods that do not work;
rather, they must seek methods that do.
ACKNOWLEDGMENT: The author thanks Susan Bagby, who
provided helpful insights on an earlier draft of this editorial.
Henry S. Perkins, MD
San Antonio, TX
Dr. Perkins is Interim Director, Center for Ethics and the
Humanities in Health Care at The University of Texas, The
University of Texas Health Science Center at San Antonio.
Correspondence to: Henry S. Perkins, MD, Department of Medicine, The University of Texas Health Science Center, 7703 Floyd
Curl Dr, San Antonio, TX 78229-3900; e-mail: [email protected].
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