“I want to be resuscitated but I don’t want to be on machines.”
“Do you want us to do everything for your father?”
Having conversations about whether to attempt cardiopulmonary resuscitation (CPR) is complex, as illustrated by the ambiguity of the two statements above. CPR was first trialed in the early 1960s on postoperative patients who were likely temporarily medically unstable, and the results were very encouraging.
After a short time and in a climate of medical optimism, this procedure was offered to everyone in the hospital and community regardless of medical condition. But by the mid-1970s doctors were aware of its limited usefulness and began to advocate for the right of the patient to refuse resuscitation.
This movement, backed by increasing patient autonomy in decision making, seems to have gradually changed the way the public and health care providers view CPR. Rather than still being considered a medical procedure with its indications, adverse effects, and outcomes all considered, it has become part of the continuum of choice for patients and their substitute decision-makers.
It is quite clear that the outcomes with CPR are dismal for patients with advanced illness, particularly those with multiple comorbidities, and even if successful these patients will not be improved beyond their condition prior to arrest. This is often not understood by patients and their decision-makers, who have inaccurate knowledge of CPR and its effectiveness and outcomes.
A qualitative study of patients and decision-makers following resuscitation discussions revealed that a number of participants understood CPR and “being revived” as something different from being on life support.
The resuscitation conversation gets more complicated when the patient doesn’t have capacity and has not made his or her preferences known to a substitute decision-maker. Substitute decision-makers can predict the preferences of their loved ones only 68% of the time, according to a meta-analysis of patient/surrogate preference comparisons, and it is also known that patient preferences change over time.
A recent paper analyzed the difference between surrogate and patient preferences and found it could be attributed mostly to the wishes of the surrogate.9 However, another study did show that patients wish to have both family and health care professionals involved in the decision-making process.
Shared decision making has generally been thought of as the gold standard for complex decisions. This process has been defined as “a collaborative endeavor in which patient and physician share not only information and intuitions but the making of decisions.”
Shared decision making includes a mutual understanding of the problem and options available, the pros and cons of the options, the patient goals and preferences, a clinician recommendation, and lastly, the jointly made decision.
A study of physicians involved in end-of-life decision-making shows they play four distinct roles: informative (medical information only, no elicitation of patient goals, no recommendation); facilitative (medical information, patient goals discussed, no recommendations); collaborative (shared-decision making); and directive (physician-made decision alone and informed patient). The majority of the interactions were collaborative and facilitative with the other two roles being outliers.
Decision making at end of life is becoming increasingly complex as medicine evolves therapies to prolong life and there are more options to weigh. Making decisions about another person’s care with information that may not be fully understood and complexities of illness and prognosis that are challenging even for those who work daily in the area may result in poor decisions or decisions that result in care that could be reasonably seen as medically futile.
Increasingly, incapable patients with multiple comorbidities near the end of life have families requesting CPR. What may lie behind this request is not necessarily the wishes of the individual, but fear and denial of death or community peer pressure about duty to show care for a loved one.
Physicians need to take the shared decision-making steps of ensuring mutual understanding of all options, particularly the no CPR option, where the health care team continues to care for the patient to allow him or her to live as well and as long as possible until death comes peacefully.
It should be explained that CPR will, at best, only return the patient to his or her current condition and that there is less than 5% chance of that happening. Physicians also need to make recommendations to patients and families, using language that is clear and that avoids medical jargon.
A case can be made for the physician to decide not to offer resuscitation to a patient with advanced illness as part of reasonable medical practice, even if the family requests it. It is important for our society to have public conversations about the limits of medicine and the limits of autonomy and for doctors to be part of these conversations.
Like it or not, physicians are stewards of health care resources. If we are going to make rational and just use of the therapies we have, we need to give clear information and recommendations to patients and families about futile medical therapies.
We make recommendations about treatment throughout the course of an illness. Let’s not abandon patients and families when it comes to end-of-life decision making.
—Romayne Gallagher, MD
—Janet McElhaney, MD
Co-chairs, Geriatrics and Palliative Care Committee
1. Jude JR, Kouwenhoven WB, Knickerbocker GG. Cardiac arrest. Report of application of external cardiac massage on 118 patients. JAMA 1961;178:1063-1070.
2. Wilder RJ, Jude JR, Kouwenhoven WB, et al. Of 153 attempted—cardiopulmonary resuscitations by trained ambulance personnel—no fatal injuries were produced. JAMA 1964;190:531-534.
3. Rabkin MT, Gillerman G, Rice NR. Orders not to resuscitate. N Engl J Med 1976;295:364-366.
4. Helft PR, Siegler M, Lantos J. The rise and fall of the futility movement. N Engl J Med 2000;343:293-296.
5. Marco CA, Larkin GL. Cardiopulmonary resuscitation: Knowledge and opinions among the US general public. State of the science-fiction. Resuscitation 2008;79:490-498.
6. Deep KS, Griffith CH, Wilson JF. Discussing preferences for cardiopulmonary resuscitation: What do resident physicians and their hospitalized patients think was decided? Patient Educ Couns 2008:72:20-25.
7. Shalowitz DI, Garrett-Mayer E, Wendler D. The accuracy of surrogate decision makers: A systematic review. Arch Intern Med 2006;166:493-497.
8. Carmel S, Mutran EJ. Stability of elderly persons’ expressed preferences regarding the use of life-sustaining treatments. Soc Sci Med 1999;49:303-311.
9. Marks MA, Arkes HR. Patient and surrogate disagreement in end-of-life decisions: Can surrogates accurately predict patients’ preferences? Med Decis Making 2008;28:524-531.
10. Hawkins NA, Ditto PH, Danks J, et al. Micromanaging death: Process preferences, values, and goals in end-of-life medical decision making. Gerontologist 2005;45:107-117.
11. Whitney SN, McGuire AL, McCullough, LB. A typology of shared decision making, informed consent, and simple consent. Ann Intern Med 2004;140:54-59.
12. White DB, Malvar G, Karr J, et al. Expanding the paradigm of the physician’s role in surrogate decision-making: An empirically derived framework. Crit Care Med 2010;38:743-750.
13. Redelmeier DA, Shafir E. Medical decision making in situations that offer multiple alternatives. JAMA 1995;273:302-305.
14. Bagheri A. Regulating medical futility: Neither excessive patient’s autonomy nor physician’s paternalism. Eur J Health Law 2008;15:45-53.
15. Quill TE, Brody H. Physician recommendations and patient autonomy: Finding a balance between physician power and patient choice. Ann Intern Med 1996;125:763-769.
Above is the information needed to cite this article in your paper or presentation. The International Committee
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Halpern SD, Ubel PA, Caplan AL, Marion DW, Palmer AM, Schiding JK, et al. Solid-organ transplantation in HIV-infected patients. N Engl J Med. 2002;347:284-7.
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