key: cord-1029743-78984ivv authors: Hughes, Katarina; Achauer, Samantha; Baker, Eileen F.; Knowles, Heidi C.; Clayborne, Elizabeth P.; Goett, Rebecca R.; Moussa, Mohamad title: Addressing end‐of‐life care in the chronically ill: Conversations in the emergency department date: 2021-10-01 journal: J Am Coll Emerg Physicians Open DOI: 10.1002/emp2.12569 sha: 5cb0bfe6400c76562f9e9c695f938c47a7f663fb doc_id: 1029743 cord_uid: 78984ivv Patients present to the emergency department in various stages of chronic illness. Advance directives (ADs) aid emergency physicians in making treatment decisions, but only a minority of Americans have completed an AD, and the percentage of those who have discussed their end‐of‐life wishes may be even lower. This article addresses the use of common ADs and roadblocks to their use from the perspectives of families, patients, and physicians. Cases to examine new approaches to optimizing end‐of‐life conversations in patients who are chronically ill, such as the Improving Palliative Care in Emergency Medicine Project, a decision‐making framework that opens discussion for patients to gain understanding and determine preferences, and the Brief Negotiated Interview, a 7‐minute, scripted, motivational interview that determines willingness for behavior change and initiates care planning, are used. ADs are intended to provide guidance to assist providers in directing patient care and treatment in cases where the patient lacks decisionmaking capacity. Some types of ADs are patient-completed directives and others are provider-completed directives. As of 2017, only 36.7% of the American population had completed any AD. 3 The percentage of people who have shown their AD to a trusted proxy may be even lower, as conversations between patients and their families concerning end-of-life care can be uncomfortable and difficult. In addition, there is a knowledge gap among providers regarding how this documentation should be interpreted and validated. 4 Approximately 85% of Americans have at least one chronic medical condition, and one study determined that, during a 15-year period, >50% of the study participants aged 65 years or older had visited an ED in the month before their deaths. 5, 6 This offers emergency clinicians a unique position to begin or refocus discussions about end-of-life care that can continue with other members of the patient's healthcare team. Descriptions of various ADs and their limitations are provided in the next sections. The living will allows patients to specify interventions they wish to The do not resuscitate (DNR) order is perhaps the most well-known AD. It varies by state and even between health facilities, leading to differences in language and potential confusion. Some states offer minimally descriptive language, such as the form for the state of New York, which reads simply, "Do not resuscitate the person named above," 9 whereas the state of Ohio offers options for DNR: Comfort Care (DNR-CC) as well as for DNR-Comfort Care Arrest (DNR-CCA). 10 In these situations, despite maximal interventions, their condition of acute cardiopulmonary failure worsened. 12 It became evident that CPR was non-beneficial to these patients. In the context of medical futility of end-of-life care, a type of "informed assent" in which family may defer to a clinician's judgment about withholding or withdrawing life-sustaining therapy allows the weight of the decision to be largely in the hands of the physician as opposed to the patient or family. 13 Patients, families, and even physicians can be confused by variations in terminology and treatment specified by the different orders. Without standard language or location for resuscitation orders, physicians may inadvertently violate those orders when acute care is required. 14 Limitation of DNR documentation also extends into the prehospital setting, where access to orders is often inadequate. Even if resuscitative care is not indicated in a patient who is terminally ill, EMS providers must provide the full scope of care if a DNR order is not present and accessible. The healthcare durable power of attorney, also known as a healthcare proxy or proxy directive, is a legal document in which another individual is granted the authority to make healthcare decisions on behalf of the signer (ie, the patient). It is only implemented when the patient becomes incompetent or unable to make decisions as a result of illness or injury. In the event the patient has not named a legal proxy, family members are called on to become the surrogate decision-maker to make medical decisions on behalf of the patients, representing what the patients would have wanted if they were able to make the decisions for themselves. State-defined hierarchies typically include the patient's spouse, followed by children and then siblings. Arkansas and Ohio are the only states in which it is required that an attending physician specifically certify that a patient is end stage/chronic or permanently unconscious before a surrogate can withhold or withdraw life-sustaining treatment, even with an AD. 17 However, there is much variation in this law from state to state. Finally, some patients may present to the ED with nonstandard ADs in the form of tattoos or medallions. It is generally agreed that these nonstandard ADs are not acceptable as true, legally binding ADs and should at most be seen as a guide to patient wishes. 18-20 Conversations regarding end-of-life wishes, chronic illness, and death are sometimes considered taboo in the United States, leading to a lack of AD completion. Those who are chronically ill must grapple with friends and family in communicating their diagnosis, care plans, and changing quality of life. Also, expressing treatment wishes and goals in documents that cover different clinical scenarios can be difficult. In one study aimed at identifying patient perspectives on the use of ADs in unanticipated clinical scenarios, 64% of participants believed that a DNR order should not apply in the setting of cardiac arrest, meaning that these patients believed that someone with a DNR order in cardiac arrest could still receive life-saving care. 21 Similarly, 80.36% of respondents believed that a DNR order does not apply in the setting of pneumonia, 60.99% for a pulmonary embolus, and 56.25% for cancer causing a collapsed lung, 21 all of which are common cases brought to the ED. Confusion and unfamiliarity over ADs felt by families and patients are echoed by physicians. In the ED specifically, current literature demonstrates that the greatest roadblocks to using ADs appropriately in medical emergencies include imprecise language, mismatch of protocols, lack of understanding by patients/families, and difficulty accessing the AD. 22 The Realistic Interpretation of Advance Directives Research Series found significant differences in application regarding the use of POLST in patients who are critically ill. 23 Physicians were provided scenarios of patients who are critically ill with POLST documents who are in cardiopulmonary arrest and were asked to determine code status and treatment decisions for the cases. When a POLST form specified DNR, decisions to resuscitate ranged from 25% to 74%, and it was only when POLST aligned with a consistent treatment picture (DNR/comfort care only vs CPR/full treatment) that correct treatment responses were 90% to 95%. 16 Similar studies in Oregon, California, and Delaware have led to changes to their POLST documents because of inappropriate use. [24] [25] [26] [27] General statements about treatment preferences in living wills can also be difficult to interpret and apply to specific clinical scenarios. Surrogate decision-makers may not make decisions that reflect patient preferences. The relationship between living wills, surrogate decisions, and portable physician orders may also be unclear. 23 The current literature demonstrates that even when physicians are presented with POLST documentation, there remains confusion on how to enact these end-of-life preferences. Emergency physicians find themselves in a unique position to explain ADs to their patients in acute settings. To this end, awareness of religious and cultural differences is essential to prevent misunderstandings. Physicians should ask their patients if they wish to consult with a religious leader regarding end-of-life choices. Furthermore, physicians must recognize what social determinants of health may be at hand, contributing to the patient's presentation. Patients may have limited medical literacy, so speaking in plain terms is encouraged. In addition, acknowledging and preventing bias is an ever-present challenge for physicians. Because emergency physicians are both gatekeepers for hospital resources and information providers for patients, AD education for physicians as well as patients can promote both patient autonomy and appropriate care. Although end-of-life care discussions may not be ideal in the ED setting, this might be the only time a patient can form a realistic clinical picture of his or her illness, its treatment, and its prognosis. One group of authors created a roadmap for trajectories in major types of chronic illnesses seen in EDs that warrant advance care planning conversa- Appendix B). 28 Use of these models can help physicians guide end-oflife care conversations in the ED with greater delicacy and skill. 7. Revise treatment goals as needed. The Brief Negotiated Interview (BNI) technique, similar to motivational interviewing, has been adapted for ED-specific end-of-life AD discussions. [30] [31] [32] This BNI intervention is based on the social cognitive theory and transtheoretical model. It provides a 7-minute, scripted, motivational interview in which a clinician explores health behavior change in patients, 32 with the goal of increasing patient motivation to initiate advance care planning conversations. 30 The following are key components to the BNI intervention: A 72-year-old man presents to the ED with right-sided chest pain for 1 month and increasing dyspnea during the past week. He reports no past medical history and states he has not seen a doctor in years. Your workup includes a computed tomography scan of the chest, which demonstrates stage IV lung cancer with metastasis to the ribs and liver. A long-time smoker, he tells you that he suspects that he might have lung cancer and "just wanted to be sure." He insists that he does not wish to pursue treatment and wants to go home. This patient has chronic illness with acute exacerbation in long-term decline (Appendix A) in which "the visit serves as an inflection point in the illness trajectory, portending a worsening course." 28 A 48-year-old man with stage IV melanoma presents with worsening back pain. His cancer has spread to multiple organs as well as his spine. He is undergoing radiotherapy to lessen the tumor burden but notes that he is losing weight and is more tired and in increasing pain. Despite this, he and his wife insist that "he's going to beat this" and request help in managing his pain. You are concerned that their treatment goals are unrealistic. At this time, he is "full-code" status. Similar to the previous case, this is an acute exacerbation in the setting of long-term functional decline. This case, unfortunately, is not unusual, as 1 study found that among a population of 1193 patients, 69% of patients with lung cancer and 81% of those with colorectal cancer did not understand that chemotherapy was palliative rather than curative for their cancer. 34 This ED visit offers an opportunity to help this patient understand his illness and treatment options more fully. Here, the patient has full capacity, as does his potential surrogate (his wife), but it is not clear that they understand that the treatment is meant to be palliative rather than curative. It is key that the physician clar- The physician's ultimate goal is to elicit genuine patient understanding of his illness and ensure that his wishes are followed. A 56-year-old woman with advanced chronic obstructive pulmonary disease is brought to the ED by ambulance for pain and difficulty breathing. Her family tells you that she is a patient in hospice, but that the medications they have been using are not sufficient to manage her pain. The family contacted the hospice nurse on call, who gave them advice on medication adjustment, but when pain continued, they came to the ED. The patient cannot answer questions because of confusion, dyspnea, and pain. She appears to be in respiratory distress with an oxygen saturation of 78% on room air. With supplemental oxygen via non-rebreather mask, her oxygen saturation improves to 93%, but her mental status is unchanged. You assure the family that you will treat her shortness of breath and pain acutely but are uncertain about pursuing laboratory and radiographic testing given her hospice status. This scenario describes a goals-of-care conversation that requires rapid decision-making between diverging treatment strategies and outcomes. In this case, the provider is working with a surrogate, and the patient's wishes are known. She is a patient in hospice, and the sur- A 90-year-old woman arrives from home via ambulance after activating her medical alarm, complaining of increased dyspnea and leg edema. You are unable to reach any family. The patient is frail but normally performs her activities of daily living. She is fiercely independent and eschews any mention of an extended care facility. She indicates that she has never created any documentation of her end-of-life wishes. Her workup reveals a non-ST-segment-elevation myocardial infarction with worsening congestive heart failure. The cardiologist feels the risk of cardiac catheterization outweighs its benefits, but you are concerned that she is a "good 90-year-old" and worry about forgoing intervention. Similar to cases 1 and 2, this case demonstrates an acute exacerbation in the setting of long-term decline. Here, however, there is no family with whom to communicate, and your patient wishes to maintain her independence. You discuss the patient's end-of-life wishes with her. You explain that the potential harms of cardiac catheterization outweigh their benefits. Together you devise a plan to optimize her medical management with the understanding that she will not receive intubation or CPR. These wishes are formalized using the POLST and DNR forms available to you. Patients with chronic illness often present to the ED. Because patients and families frequently lack full understanding of chronic illnesses, their prognoses, and options for ADs, emergency physicians are in a unique position to facilitate goals of care and advance care planning conversations. Through measures such as the Improving Palliative Care in Emergency Medicine Project, the BNI, and shared decision-making in general, emergency physicians may help patients optimize their plan of care, enabling them to receive care that aligns with their genuine wishes. Religious leaders may be asked to participate in these discussions, in accordance with a patient's desires. Long-term trends in Medicare payments in the last year of life The Myth regarding the high cost of end-oflife care Approximately one in three us adults completes any type of advance directive for end-of-life care living will" you signed? At the ER, it could be open to interpretation. 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Paper presented at: Association for the Advancement of Artificial Intelligence 2011 Spring Symposium Empower seriously ill older adults to formulate their goals for medical care in the emergency department American College of Emergency Physicians Patients' expectations about effects of chemotherapy for advanced cancer The authors declare no conflict of interest.