Emergency care at the end of life is shrouded in myth and misinformation. Debunking these five fallacies will help you improve EOL care and communicate better with patients and their families.
Emergency care at the end of life is shrouded in myth and misinformation. Debunking these five fallacies will help you improve EOL care and communicate better with patients and their families.
1. A 70 year-old woman with advanced gastric adenocarcinoma presents to the ED lethargic, hypotensive and hypoxic. Her family describes a very precipitous decline over the past week, after being told by her oncologists that there was “nothing more we can do.” you’re worried the patient might be dying and want to speak to the family about her end of life preferences. the family struggles about whether to forgo the use of treatments like mechanical ventilation and CPR, feeling, in essence, like they would be contributing to her death. you’re wondering about whether these interventions would be helpful to her at this point.
Myth #1: Focusing on comfort sacrifices longevity
REALITY: Emergency physicians are familiar with the physical and emotional price paid by patients who receive highly medicalized treatment at the end of life (EOL). The suffering seems justified to many, however, if such care can meaningfully prolong life. Not surprisingly, there is a growing body of literature demonstrating the significant limitations of life-prolong- ing measures in terminally ill patients. For example, a cardiopulmonary arrest following a progressive decline in end-stage cancer patients is almost never associated with survival to hospital discharge, even in those opting to be “full code.” (1) Outcomes are similarly dismal for critically ill patients on vasopressors who suffer a cardiac arrest. (2) Recent studies suggest that in patients with advanced cancer, more aggressive EOL treatment, particularly in the form of chemotherapy, actually shortens survival for some patients. (3, 4) A large study of Medicare patients with both cancer and CHF revealed a similar trend: patients enrolled in hospice, which prioritizes comfort and quality of life, lived longer than comparable patients not enrolled.(5) Many terminally ill patients seem to cross a threshold beyond which the relentless pursuit of more time actually shortens it. Emergency physicians should be mindful of this paradoxical finding when counseling terminally ill patients about their EOL options, including the use of life-prolonging therapies and the possibility of re-shifting goals towards comfort, quality of life (QOL) and being at home.
2. A 65 year-old man with a history of COPD, CHF, and DM presents to the ED in septic shock, most likely secondary a UTI. you aggressively treat him with antibiotics and intravenous fluids and he’s showing some improvement though his lactate remains elevated and his BP tenuous. you consult the ICU team and they quickly reject him, citing a previous admission in which he made himself “DNR.”
Myth #2: DNR means Do Not Treat
REALITY: DNR stands for Do Not Resuscitate, not Do Not Treat. Translation: do not attempt a resuscitation in the setting of a full cardiopulmonary arrest. When patients choose to be DNR, they have stated almost nothing about their EOL goals or preferences to receive aggressive, life-sustaining treatments versus comfort-oriented care. What they have told the medical community is how their care should be handled once they have died. Too often, this very limited advance directive is misinterpreted, with physicians making broad assumptions about other types of treatments the patient would or would not want, based on their decision to be DNR. (6) Disturbingly, DNR status alone is strongly associated with refusal of care by the ICU team.(7) The increasingly available POLST (Physician Orders for Life-Sustaining Treatment) advance directive gives patients and caregivers the option to state their preferences for a variety of treatments frequently considered at the EOL, beyond resuscitation status. In Oregon, where the POLST program has been widely implemented, of patients opting to be DNR, about half still want either full aggressive or limited treatments focused on life-prolongation.(8)
3. A 90 year-old woman with mild frailty but otherwise healthy, presents to the ED lethargic and in respiratory distress after being found down in her apartment. Her work-up reveals severe rhabdomyolysis, pneumonia and renal failure. you suspect she’s been on the ground a couple of days. As her condition worsens, you call her son on the phone to discuss whether or not to intubate her. He says that he knows his mother has thought about these issues and even created a living will but it’s locked in a safe in her apartment.
Myth #3: It’s the primary care doctor’s job to discuss EOL issues
REALITY: A common source of frustration for emergency providers is the perceived lack of advance care planning that takes place in the primary care setting. (18) It is often assumed that unnecessary conflict and drama could be avoided if primary care doctors only engaged their patients in discussions about EOL wishes and instructed them to complete advance directives. Unfortunately, acute illness is often unanticipated and the unique circumstances surrounding any given patient’s critical illness can severely limit the ability of advance directives to guide treatment decisions. (19) Furthermore, it has been demonstrated repeatedly that patient values and preferences for life-sustaining treatments change as they move along their illness trajectory. (20, 21) In other situations, outpatient provider at- tempts to engage terminally ill patients in EOL discussions are met with considerable resistance. Few people enjoy discussions about death and dying. For all of these reasons and a host of others, emergency providers will always be thrust into the uncomfortable yet critical role of counseling patients and families about treatment options at the EOL. It is therefore paramount that emergency physicians learn how to navigate these challenging conversations.
4. A 65 year-old woman presents to the ED with altered mental status. She’s obtunded on arrival and intubated for airway protection. A CT head reveals a large intracranial hemorrhage. you overhear the neurology resident tell the family that her prognosis is “poor” and then ask whether they would want us to do chest compressions and shock her when her heart stops. the family says, “of course. Do everything you can to save her.”
Myth #4: Code status discussions should focus on descriptions of CPR
REALITY: There are many serious errors physicians commit in counseling patients and caregivers about code status. (9) These mistakes have broad implications as communication style is a critical determinant of choices patients make regarding EOL care. (10, 11) One error involves focusing the discussion on CPR, rather than the out- come achieved by doing it. It is not unusual for physicians to ask patients and families whether they want “chest compressions” or “to be shocked” if their heart stops. I often overhear that a patient “wants to be full code” as if he or she looks forward to the gruesome interventions like chest compressions and defibrillation associated with an ACLS protocol. Patients opt to be full code because of what they believe, often inaccurately, a resuscitation can do for them, not because they have any investment in the individual components of a medical resuscitation. In a study of patients with serious illnesses, only 11% would opt for any type of treatment, even if minimally burdensome, if the outcome was likely to be life with severe cognitive impairment. (12) Accordingly, emergency physicians need elicit what their patients consider an acceptable quality of life and then determine whether an attempted resuscitation can realistically get them there. Another commonly observed mistake involves the “out of context” code status discussion. Unfortunately, terminally ill patients and their caregivers are frequently misinformed about their poor prognosis. (13, 14) Emergency physicians are surprised to see patients dying of cancer who are still “full code.” It is not unusual, how- ever, to learn that these patients have no idea that they are dying. According to a recent study, 80% of patients with terminal cancer believe that their chemotherapy is curative. (15) This highlights the need to embed discussions about code status within a larger conversation that includes information about overall prognosis and explores patient goals. When an attempted resuscitation cannot achieve patient goals and/or the treating physician believes that there will be considerable harm associated with even a “successful” resuscitation (prolonged dying in ICU), there is growing consensus that physicians strongly recommend against use of this intervention (informed assent), rather than asking patients what they would want. (16, 17) In these circumstances, patients should not be told to “be DNR” but instead advised that a natural and peaceful death is in their best interest.
5. A 55 year-old man with a history of lung cancer, enrolled in hospice, presents to the ED complaining of severe shortness of breath. He’s hypoxic and tachypneic on arrival. His chest X-Ray is most consistent with progression of his lung cancer. He’s placed on oxygen via a nasal cannula and while his hypoxia resolves, he’s still uncomfortable and tachypneic. you get in touch with his hospice nurse who recommends giving him a low dose of morphine. you hesitate in placing the order, however, as you don’t want to be accused of hastening anyone’s death.
Myth #5: Opiates hasten death
REALITY: While there seems to be awareness of opiates’ ability to effectively palliate dyspnea and pain in dying patients, there is less knowledge about the safety profile of such medicines in this population. Physicians often endorse their use in principle, citing the law of “double effect”. According to this rule, it is appropriate and ethically permissible to give an intervention that can hasten death, as long as the intent of the treatment is symptom-relief. Obviously, opiates can not only hasten death but directly cause it when given in large enough amounts; how- ever, when titrated carefully in EOL populations, they have never actually been shown to hasten death. (22, 23) This distinction is critical as emergency physicians may broadly endorse the double effect principle but personally shy away from using a medication they perceive to be accelerating the dying process. Emergency physicians should feel comfortable using opiates for dying patients with dyspnea, starting with low doses (morphine 1 mg or hydromorphone 0.2 mg) and then escalating up by 50% every 15 minutes until the patient is breathing comfortably. (24)
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2. Tian J, Kaufman DA, Zarich S, Chan PS, Ong P, Amoateng-Adjepong Y, et al. Outcomes of critically ill patients who received cardiopulmonary resuscitation. Am J Respir Crit Care Med. 2010;182(4):501-6.
3. Temel JS, Greer JA, Muzikansky A, Gallagher ER, Admane S, Jackson VA, et al. Early palliative care for patients with metastatic non-small-cell lung cancer. N Engl J Med. 2010;363(8):733-42.
4. Greer JA, Pirl WF, Jackson VA, Muzikansky A, Lennes IT, Heist RS, et al. Effect of early palliative care on chemotherapy use and end-of-life care in patients with metastatic non-small-cell lung cancer. J Clin Oncol. 2012;30(4):394-400.
5. Connor SR, Pyenson B, Fitch K, Spence C, Iwasaki K. Comparing hospice and nonhospice patient survival among patients who die within a three-year window. J Pain Symptom Manage. 2007;33(3):238-46.
6. Beach MC, Morrison RS. The effect of do-not-resuscitate orders on physician decision-making. J Am Geriatr Soc. 2002;50(12):2057-61.
7. Cohen RI, Lisker GN, Eichorn A, Multz AS, Silver A. The impact of do-not- resuscitate order on triage decisions to a medical intensive care unit. J Crit Care. 2009;24(2):311-5.
8. Fromme EK, Zive D, Schmidt TA, Olszewski E, Tolle SW. POLST Registry do- not-resuscitate orders and other patient treatment preferences. JAMA. 2012;307(1):34-5.
9. Sharma RK, Jain N, Peswani N, Szmuilowicz E, Wayne DB, Cameron KA. Unpacking resident-led code status discussions: results from a mixed methods study. J Gen Intern Med. 2014;29(5):750-7.
10. Volandes AE, Paasche-Orlow MK, Barry MJ, Gillick MR, Minaker KL, Chang Y, et al. Video decision support tool for advance care planning in dementia: randomised controlled trial. BMJ. 2009;338:b2159.
11. Volandes AE, Paasche-Orlow MK, Mitchell SL, El-Jawahri A, Davis AD, Barry MJ, et al. Randomized controlled trial of a video decision support tool for cardiopulmonary resuscitation decision making in advanced cancer. J Clin Oncol. 2013;31(3):380-6.
12. Fried TR, Bradley EH, Towle VR, Allore H. Understanding the treatment preferences of seriously ill patients. N Engl J Med. 2002;346(14):1061-6.
13. Temel JS, Greer JA, Admane S, Gallagher ER, Jackson VA, Lynch TJ, et al. Longitudinal perceptions of prognosis and goals of therapy in patients with metastatic non-small-cell lung cancer: results of a randomized study of early palliative care. J Clin Oncol. 2011;29(17):2319-26.
14. Mitchell SL, Teno JM, Kiely DK, Shaffer ML, Jones RN, Prigerson HG, et al. The clinical course of advanced dementia. N Engl J Med. 2009;361(16):1529-38.
15. Weeks JC, Catalano PJ, Cronin A, Finkelman MD, Mack JW, Keating NL, et al. Patients’ expectations about effects of chemotherapy for advanced cancer. N Engl J Med. 2012;367(17):1616-25.
16. Lamas D, Rosenbaum L. Freedom from the tyranny of choice–teaching the end- of-life conversation. N Engl J Med. 2012;366(18):1655-7.
17. Blinderman CD, Krakauer EL, Solomon MZ. Time to revise the approach to determining cardiopulmonary resuscitation status. JAMA. 2012;307(9):917-8.
18. Smith AK, Fisher J, Schonberg MA, Pallin DJ, Block SD, Forrow L, et al. Am I doing the right thing? Provider perspectives on improving palliative care in the emergency department. Ann Emerg Med. 2009;54(1):86-93, e1.
19. Sudore RL, Fried TR. Redefining the “planning” in advance care planning: preparing for end-of-life decision making. Ann Intern Med. 2010;153(4):256-61.
20. Ditto PH, Jacobson JA, Smucker WD, Danks JH, Fagerlin A. Context changes choices: a prospective study of the effects of hospitalization on life-sustaining treatment preferences. Med Decis Making. 2006;26(4):313-22.
21. Ditto PH, Smucker WD, Danks JH, Jacobson JA, Houts RM, Fagerlin A, et al. Stability of older adults’ preferences for life-sustaining medical treatment. Health Psychol. 2003;22(6):605-15.
22. Bengoechea I, Gutierrez SG, Vrotsou K, Onaindia MJ, Lopez JM. Opioid use at the end of life and survival in a Hospital at Home unit. J Palliat Med. 2010;13(9): 1079-83.
23. Portenoy RK, Sibirceva U, Smout R, Horn S, Connor S, Blum RH, et al. Opioid use and survival at the end of life: a survey of a hospice population. J Pain Symptom Manage. 2006;32(6):532-40.
24. Shreves A, Pour T. Emergency management of dyspnea in dying patients. Emerg Med Pract. 2013;15(5):1-19; quiz -20.