Case Objectives

• Appreciate challenges of determining goals of care in hospitalized patients
• Understand patients’ common misconceptions about CPR
• List typical mistakes physicians make when discussing advanced care planning
• Recognize steps physicians and health care systems can take to improve advanced care discussions

Case & Commentary: Part 1

60-year-old woman with a long history of severe asthma without prior intubations presented to the emergency department with shortness of breath. Her exercise tolerance had been worsening gradually over 2 months prior to admission, with a marked decrease in her ability to complete her activities of daily living. On physical examination, her blood pressure was 145/85, pulse 85, oxygen saturation of 94%, with a respiratory rate of 22. Her lung exam was significant for diffuse-end expiratory wheezes and decreased breath sounds at the bases. Despite having a long-standing relationship with a primary care physician, the patient had not designated a health care proxy or completed a living will prior to admission.

Hospitalized patients may lose the capacity to make medical decisions. If this occurs, hospital-based physicians must discuss treatment decisions with a surrogate decision-maker, and any decisions they make should be based on the patient’s preferences.(1) These preferences could be indicated in a written document such as an advance directive, or in a medical record note, documenting discussions between the patient and primary care physician.

Approximately 75% of patients who present to hospital emergency rooms do not have an advance directive.(2) In the absence of a terminal diagnosis or advanced serious chronic illness, they are even less likely to have completed such a document. Even when completed, such documents are frequently unavailable to physicians in the hospital. When available, they may be difficult to interpret in the context of specific interventions.

Ascertaining the patient’s preferences with respect to resuscitation is particularly important. If a cardiopulmonary arrest occurs, there is no opportunity to ask the patient whether she wants cardiopulmonary resuscitation (CPR) attempted. Moreover, because CPR needs to be instituted immediately to have a chance to succeed, there is no opportunity to ask the patient’s surrogate. On a population level, we know that 30% of patients with serious underlying illness do not want resuscitation attempted.(3) However, on an individual level, physicians cannot predict patient’s preferences regarding CPR without asking them explicitly. Thus, hospitalists and house officers often need to discuss advance directives with patients whom they have not previously met.

Case & Commentary: Part 2

Upon admission, the intern spoke with the patient about code status. The patient stated that she “would not want to be on a tube to breathe.” When asked about CPR, she stated she did not want “shocks to the heart or pressing on my heart.” She stated that if her breathing continued to be this difficult and she could not live independently, she would rather not survive. The intern interpreted these statements as indicating the patient’s desire for do-not-resuscitate (DNR) status, and called the resident to discuss this issue without filling out the hospital’s DNR form.

The medical literature focuses on the concern that patients with serious or terminal illness may inappropriately receive CPR despite its very low success rate and its extreme invasiveness. This case raises the opposite issue: whether patients with highly reversible conditions refuse CPR because they fail to appreciate how effective it is likely to be in their situation. In either terminal illness or readily reversible conditions, discussions between physicians and patients concerning DNR orders and advance directives have several common features.

First, physicians often use vague language. In this case, the patient was asked, “Would you want your life prolonged?” without any explanation that intubation necessitated by an asthma exacerbation is usually effective and temporary. In other discussions, physicians may use such terms as “very sick” or “very serious” and do not clarify what they mean by these terms.

Second, physicians commonly use scenarios to elicit patient preferences regarding future care. In one study of primary care physicians discussing advance directives, 91% presented dire scenarios.(4) For example, doctors typically asked the patient to consider, “If you were sick with a terminal illness ... if you had something that could never be cured ... and you started to get really, really sick.” In contrast, only about half of physicians presented scenarios that involved uncertain outcomes or reversible conditions. The reversible nature of this patient’s illness was not discussed.

Third, physicians often miss opportunities to address patient concerns and clarify their values. Many patients say that they would not want life-sustaining interventions if they had little prospect of a good quality of life. Physicians rarely ask what constitutes an acceptable quality of life to the patient, or what counts as a small prospect of benefit. Likewise, physicians rarely clarify what patients mean when they say that do not want interventions that would be a burden. This patient stated that she valued living independently and if she could not do so, she would rather not survive. However, there was no discussion whether she would accept temporary dependence on mechanical ventilation in order to regain her previous level of health. For example, the patient could have been offered a time-limited trial of therapy.

Fourth, when discussing CPR, physicians usually explain the intervention in highly technical terms, without checking whether patients understand the information.(5) Physicians dominate these conversations speaking nearly three-fourths of the time, giving patients little opportunity to ask questions or raise concerns.(5) In this case, we do not know the details of the conversation. However, later developments indicate that the patient misunderstood the effectiveness of mechanical ventilation in her situation.

Finally, even after discussions with physicians, patients commonly have serious misunderstandings about CPR.(6) In one study, patients estimated that survival after CPR is 70%, whereas in reality survival of CPR administered on general hospital floors is about 10% to 15%.(6) When patients were asked to describe CPR, 26% could identify no features of CPR. With regard to mechanical ventilation, 37% of respondents thought that ventilated patients could talk, 20% thought ventilators were oxygen tanks, and 20% thought that people on ventilators are always comatose. Thus although patients could express clear preferences regarding whether they wanted CPR, they often did not understand the interventions to which they were referring. It is likely that the patient in this case envisioned “shocks to the heart” as pre-terminal procedures and, in contrast to many other patients, was overly pessimistic about its success rate for her situation.

Case & Commentary: Part 3

A few hours after admission, the patient had sudden respiratory failure leading to pulseless electrical activity (PEA) arrest. The nurse, who did not know the patient’s code status, called a code and CPR was initiated. The code team found the intern’s initial assessment, which stated the patient’s preference for no resuscitation or intubation efforts; however, this was not corroborated by the requisite DNR/DNI form. The resident had discussed the case briefly with the intern (including her interpretation that the patient wished to be a DNR), but neither the resident nor the attending had discussed code status with the patient yet. At this point, the patient’s blood pressure was 90/palpable with a heart rate of 40 and an O2 saturation of 92% with assisted bag-mask ventilation.

When the patient suffered a witnessed arrest, the team had to decide whether to implement a DNR order. During an asthma exacerbation, there was a high probability that after several days she would be extubated and eventually restored to her baseline clinical condition. In ethical terms, the physicians were concerned that forgoing CPR and intubation would violate the principle of beneficence, which requires physicians to act for the benefit of their patients. However, physicians also need to respect patient autonomy, which allows competent informed patients to refuse any intervention, even life-saving ones.(7) The implicit ethical justification for overriding the “DNR order” in this case is that there was substantial doubt that the patient’s refusal of resuscitation was informed. Furthermore, the issue had never been discussed with an attending physician, and no DNR order was written in the medical record. The team appropriately attempted resuscitation.

Case & Commentary: Part 4

The patient did receive cardiopulmonary resuscitation, including medications and chest compressions. In an effort to respect the patient’s preference to avoid invasive ventilation, she was started on noninvasive bi-level positive airway pressure (BIPAP) ventilation. Spontaneous respirations returned with BIPAP and the patient was stabilized.

The following day, the patient was alert and was able to express her thoughts about the events of the previous night. She had not realized that intubation could be performed as a temporizing measure. The patient thought that initiation of intubation was synonymous with permanent respiratory support, and stated that she thought the discussion was about whether she would want to be kept alive if she was “a vegetable.” Furthermore, she had not realized that resuscitation attempts could be successful. After her experience, she stated she did want aggressive interventions for reversible causes. Her code status was changed to full code.

One should not over-generalize from this unusual case. It is always possible to question whether a patient really understands the possible (or likely) benefits of resuscitation. However, overriding a patient’s decision should not be taken lightly. What is ethically required is substantial doubt that the refusal was informed, not just a theoretical concern. In more usual cases, patients who suffer cardiopulmonary arrest in the hospital do not have a reversible underlying condition or a good prognosis after resuscitative measures. To override a written DNR order, the patient should have a very high likelihood of returning to baseline function after a short intervention.

The housestaff’s intuition when the arrest occurred was sound: her refusal did not make sense in her situation, and almost all patients like her would agree to resuscitation. The real lesson here is that the housestaff should have acted on that intuition at the time of the original discussion about resuscitation, by engaging the patient in further discussion to ensure her decision was truly informed.

Taking the perspective of using errors as opportunities for quality improvement, we make the following suggestions to physicians for discussing advance care planning with patients:

• Do more listening and less talking.
• Elicit patients’ values and overall goals of care, and then present CPR or DNR as a way of matching appropriate medical treatments with these goals.
• Use simple language to explain CPR and intubation.
• Make clear the alternative to CPR is death, and express, quantitatively or qualitatively, the likely survival after CPR. If applicable, distinguish situations where the outcomes are better, for example resuscitation in the operating room or during conscious sedation for procedures.
• Ask about preferences regarding scenarios with uncertain outcomes, such as successful cardiac resuscitation with resultant severe anoxic brain injury.
• Assess the patient’s understanding, particularly if the decision is contrary to what would be expected in similar patients. Thus, if a patient with a reversible condition refuses resuscitation, the physician should ascertain that the patient understands that these interventions have a high chance of success.
• Reassess the patient’s goals of care at every hospitalization.

From the point of view of improving health care delivery systems, we make additional recommendations:

• Standardize the DNR order sheet, with separate authorization for CPR, intubation, and vasopressors. Consider including other life-prolonging interventions (ie, tube feeds, antibiotics, dialysis) that may be instituted in patients who will not receive CPR. Remember patients generally need considerable guidance in these options. Be careful not to become too focused on the checklist.
• Teach residents how to elicit patients’ preferences and arrive at goals of care.(8) Physicians rarely watch others discuss resuscitation and advance directives with patients, and trainees are seldom observed in these discussions by more senior physicians. To teach such communication skills, lectures alone are insufficient; trainees need opportunities to practice skills and receive feedback. Role playing, standardized patients, and review of videotaped interviews may be useful.
• Promote interactions between hospital-based and primary care physicians.(9) Perhaps hospital-based housestaff and hospitalists should talk to these physicians before they write DNR or DNI orders. In this case, the outpatient attending physician may have said that the refusal was not like the patient at all and questioned whether she really understood the decision.

Bernard Lo, MD Professor of Medicine Director, Program in Medical Ethics University of California, San Francisco San Francisco, California

James A. Tulsky, MD Associate Professor of Medicine, Duke University School of Medicine Associate Director, Duke Institute on Care at the End of Life Director, Program on the Medical Encounter and Palliative Care, Durham V.A. Medical Center Durham, North Carolina

Faculty Disclosure: Dr. Lo and Dr. Tulsky have declared that neither they, nor any immediate member of their family, have a financial arrangement or other relationship with the manufacturers of any commercial products discussed in this continuing medical education activity. In addition, their commentary does not include information regarding investigational or off-label use of pharmaceutical products or medical devices.

References

1. Lo B. Standards for decisions when patients lack decision-making capacity. In: Lo B. Resolving ethical dilemmas: A guide for clinicians. 2nd ed. Philadelphia: Lippincott Williams & Wilkins; 2000:95-105.

2. Ishihara KK, Wrenn K, Wright SW, Socha CM, Cross M. Advance directives in the emergency department: too few, too late. Acad Emerg Med. 1996;3:50-3.[ go to PubMed ]

3. Hofmann JC, Wenger NS, Davis RB, et al. Patient preferences for communication with physicians about end-of-life decisions. SUPPORT Investigators. Study to understand prognoses and preference for outcomes and risks of treatment. Ann Intern Med. 1997;127:1-12.[ go to PubMed ]

4. Tulsky JA, Fischer GS, Rose MR, Arnold RM. Opening the black box: how do physicians communicate about advance directives. Ann Intern Med. 1998;129:441-449.[ go to PubMed ]

5. Tulsky JA, Chesney MA, Lo B. How do medical residents discuss resuscitation with patients? J Gen Intern Med. 1995;10:436-442.[ go to PubMed ]

6. Fischer GS, Tulsky JA, Rose MR, Siminoff LA, Arnold RM. Patient knowledge and physician predications of treatment preferences after discussions of advance directives. J Gen Intern Med. 1998;13:447-454.[ go to PubMed ]

7. Lo B. Promoting the patient’s best interests. In: Lo B. Resolving ethical dilemmas: A guide for clinicians. (2nd ed.) Philadelphia: Lippincott Williams & Wilkins, 2000:30-41.

8. Tulsky JA, Chesney MA, Lo B. See one, do one, teach one? Housestaff experience discussing do-not-resuscitate orders. Arch Intern Med. 1996;156:1285-1289.[ go to PubMed ]

9. Lo B. Ethical and policy implications of the hospitalist system. Am J Med. 2001;111:48-52.[ go to PubMed ]