Palliative care for adults in the ED: Goals of care, communication, consultation, and patient death

INTRODUCTION — Patients with chronic, severe, or life-threatening conditions who would benefit from palliative interventions present to the emergency department (ED) every day. Whenever possible, emergency clinicians should engage patients and their families in conversations about palliative care and hospice services. Early referral from the ED to palliative medicine or, when indicated, to hospice can improve both quality and quantity of life. Such practice is in keeping with the recommendations of the American College of Emergency Physicians (ACEP) [1].

This review focuses on the ED implementation of palliative care core concepts, including methods for determining goals of care, communication with patients and loved ones, and appropriate referral. More detailed discussions of palliative medicine practice outside the ED are found separately and include the following topics:

●Symptom management in the ED (see "Palliative care for adults in the ED: Concepts, presenting complaints, and symptom management")

●General concepts and patient assessment (see "Approach to symptom assessment in palliative care" and "Overview of comprehensive patient assessment in palliative care" and "Benefits, services, and models of subspecialty palliative care" and "Palliative care and hospice outside of the United States")

●Symptom management (see "Pain control in the critically ill adult patient" and "Assessment and management of dyspnea in palliative care" and "Palliative sedation" and "Overview of managing common non-pain symptoms in palliative care" and "Palliative care: The last hours and days of life")

DETERMINING GOALS OF CARE AND RELATED ISSUES

Assessing and communicating prognosis — Disease prognosis often poses challenges in the clearest of clinical circumstances [2-5]. Prognostication tools that are both specific to a disease (eg, the Palliative Prognostic Index for patients with terminal cancer (table 1)) and nonspecific (eg, the Palliative Performance Scale) exist, but they can be difficult to apply to a patient in the ED. Excluding clear catastrophic events (eg, massive inoperable intracranial hemorrhage), the clinical circumstances of many severely ill patients presenting to the ED can change rapidly as interventions take effect, complicating attempts at prognostication. The existence of chronic disease states that may or may not be related to the acute problem can further complicate matters.

As an example, consider the patient with chronic obstructive pulmonary disease (COPD) and advanced lung cancer or pulmonary metastases who develops acute respiratory difficulty and is then diagnosed with multilobar pneumonia. It may be difficult to determine the extent to which each ailment is contributing to the patient’s respiratory difficulty and, thus, the prognosis. Further complicating matters is that the prognosis of certain end-stage conditions, such as heart failure and end-stage liver disease, is highly variable. (See "Survival estimates in advanced terminal cancer" and "Communication of prognosis in palliative care" and "Palliative care for patients with end-stage liver disease", section on 'Disease trajectory and estimating prognosis' and "Palliative care for patients with advanced heart failure: Indications and systems of care", section on 'Challenges to accurate prognostication'.)

Nevertheless, providing some prognostic information is important to help patients and their families understand the need to develop an advance care plan. Framing the discussion as “hoping for the best but planning for the worst” may help patients and loved ones feel less threatened by the discussion [6]. When attempting to estimate prognosis in the ED, clinicians should consider the following [3,4,7-10]:

●Disease state – Consider the nature and clinical stage of any chronic disease. When patients, families, or other loved ones cannot provide sufficient detail, the emergency clinician should review the medical record, especially subspecialists’ notes regarding disease staging and prognosis, or if time allows, speak with the primary treating clinician directly.

●Functional status – The patient’s baseline functional status prior to the ED visit may be the best predictor of postpresentation and intervention outcomes. As an example, the prognosis of a patient with brain metastasis who presents with sepsis but has a good functional status is different than that of a patient with similar disease who is emaciated and bedbound. Ask the following questions:

•What daily activities does the patient need assistance with?

•How much time is spent out of the bed daily?

Functional status can be assigned a grade using a scale such as the Palliative Performance Scale, which has prognostic value [11]. Functional status also helps determine the optimal disposition. Patients who are completely dependent on others to perform activities of daily living and who lack an available caregiver may not be appropriate for a home disposition.

●Clinician judgment – Clinical judgment is an important tool when determining if a patient’s prognosis is poor. Ask yourself: “Would I be surprised if this patient died in (eg, hours, days, weeks, months) or during this hospitalization?” [12]. Although the utility of this so-called “surprise question” is probably greater in cancer patients than in those with a non-cancer diagnosis [13], data are emerging for other conditions such as heart failure [14]. (See "Benefits, services, and models of subspecialty palliative care", section on 'Identifying patients appropriate for a palliative care assessment'.)

●Expert opinion – If the patient is not actively dying, we recommend that emergency clinicians take time to understand what prognosis the patient was given by their main clinician of record (with cancer, the oncologist; with COPD, the pulmonologist) before engaging in any discussions about specific treatment plans. Nothing undermines a patient’s trust in health care more than divergent opinions and information.

Using appropriate language to discuss patient goals of care — Goals of care conversations serve as road maps for care [5,15-17]. If the clinician can elicit where the patient wants to be and what adverse outcomes they want to avoid, then the clinician can recommend a care plan to match these objectives. We recommend using open-ended questions to initiate conversations about goals and to allow the patient to articulate these goals in their own words. “Help me understand what you are hoping will happen” is a good example of such a question. Discussions about goals of care need to be conducted in a culturally sensitive manner with appropriate language that respects the patient’s values and preferences. (See "Discussing goals of care", section on 'A suggested approach to discussing goals of care' and "The patient’s culture and effective communication".)

A common practice in the ED is to begin treatment conversations with a discussion about a specific intervention, such as cardiopulmonary resuscitation (CPR) or endotracheal intubation. This practice is often counterproductive. Discussions of invasive medical procedures and interventions can be overwhelming to patients and loved ones, especially when they are not put into the context of the patient’s goals of care. Furthermore, they may be interpreted as disagreement between the clinical team and the patient/family members/other loved ones about the current treatment, particularly if there have been repeat hospitalizations of a patient with progressive incurable illness. Specific treatments are best discussed in the context of the patient’s overall goals and preferences, which should be delineated first whenever possible. (See "Discussing goals of care", section on 'Biasing the conversation'.)

Beginning goals of care conversations in the ED is an important step in preparing the patient and their loved ones and in laying the groundwork for future discussions with other clinicians. Although conversations may not produce immediate resolution, this should not deter emergency clinicians from initiating these conversations. In the ED, two main types of goals of care conversations often take place [18]: hyperacute or “crisis” communications when a person arrives to the ED with an acute clinical crisis, and sub-acute or “serious illness” conversations where a person is in the ED due to a serious illness albeit not in a critical crisis state. Crisis communications are a challenge, since they allow for minimal time to build patient doctor relationships due to urgency and a focus on decisions that have to be rapidly made between multiple treatment options, eg, intubation versus comfort care only. These conversations may also be “too late.” Therefore, having serious illness conversations during ED visits as “teachable moments” are more likely to be meaningful to allow for formulation of future care preferences.

How the emergency clinician phrases their questions and statements matters a great deal. Negative statements, such as “There is nothing more we can do for you,” can cause patients and families to feel abandoned, hurt, or angry. Patients and their loved ones need to be reassured that care will always be provided, regardless of the patient’s status or wishes. Clinicians can reassure patients and their loved ones that discussions about goals of care are to ensure that the medical care provided is consistent with the patient’s wishes (to the full extent that this is feasible). Care will continue to be provided no matter what; however, the content of that care will change as death approaches.

When the goals of care are determined, it is important that every clinician caring for the patient be made aware of the decisions reached and share an understanding of the goals. Thus, documentation of the discussion in the medical record is essential. Many health systems have designated sections within the medical record for such documentation, thereby enabling others to find this information easily.

Rapid goals of care discussions — Conversations about goals of care can be difficult to hold in the ED, where time constraints, lack of an established clinician-patient relationship, challenges in the physical environmental (eg, overcrowding), and competing demands limit the kinds of interactions that can occur. Moreover, the patient’s clinical status may be changing rapidly, or the patient may be in extremis, limiting the ability to have conversations while the patient has decisional capacity. Often, these conversations must occur in the context of incomplete information, as the cause for the ED visit was sudden, all the results and consultative advice are pending, and the prognosis is uncertain [19].

In the ED, the critical status of a patient may require the clinician to deliver serious news immediately to family members or other loved ones, and to discuss emergency treatment options, such as endotracheal intubation. Such time-critical dilemmas increase the pressure to reach a decision rapidly so clinicians can act. Whenever possible, taking a few minutes to clarify the patient’s goals and preferences first, before discussing actual decisions, can help others engage in decision-making. When decisions are made about initiation of life-sustaining interventions, it is often helpful to present treatment options as time-limited trials to see if they will meet the care goals; if they do not, this may set the stage for possible withdrawal later when they no longer meet the patient’s care goals [4,12,20]. Another productive tactic is to portray life-sustaining treatments as “bridges to recovery,” thus implying that life-sustaining treatment is not intended to be indefinite therapy and is only appropriate when the patient has the potential for recovery at some future time.

Whenever possible, a structured, stepwise approach to goals of care discussions is preferred. One option is a concise guide available from VitalTalk to assist the clinician in framing a discussion about transitions and goals of care. It uses the REMAP framework (reframe, expect emotion, map out the future, align with values, plan treatments that match values). Other approaches, such as the Serious Illness Conversation Guide (table 2), are available. (See "Discussing goals of care", section on 'A suggested approach to discussing goals of care'.)

The table summarizes an approach to and provides useful language for holding a rapid goals of care conversation in the ED (table 3) [16,21,22].

Issues that naturally arise during conversations about goals of care include the following:

●Resuscitation orders/code status

●Use of invasive and noninvasive diagnostic tests or treatments (eg, mechanical and noninvasive ventilation, hemodialysis, intravenous [IV] vasopressors, surgery, blood products, antibiotics)

●Prognosis and trajectory of illness

●Approach and commitment to controlling symptoms

●Disposition and discharge options, to include home, hospice care, hospitalization, initiation of critical care

Once overarching goals are determined, the emergency clinician must translate these goals into action. The clinician should review the patient’s current treatments (eg, vasopressor medications), planned tests, and planned interventions and should decide which are consistent with the patient’s goals. Proposed or active interventions that do not help meet the patient’s goals should be discontinued after obtaining permission (either explicitly or implicitly) from the family. It may be helpful to leave equipment in the patient’s room after discontinuation so that the transition in care appears less abrupt and allows family members or other loved ones to adjust.

Working with surrogate decision-makers — When patients have lost the ability to speak for themselves or the capacity to make complex medical decisions (see "Assessment of decision-making capacity in adults"), it becomes necessary to obtain guidance from others who know the patient well or have been entrusted to make decisions on the patient’s behalf. If the patient has completed appropriate documentation (eg, Durable Power of Attorney for Health Care [DPAHC]), the surrogate decision-maker is clear. If the patient has not designated a decision-maker, the default surrogate is determined according to local statute. These issues are discussed separately. (See "Legal aspects in palliative and end-of-life care in the United States", section on 'Surrogate decision makers'.)

The role of the surrogate is to make treatment decisions based on what they believe the patient would want. The clinician should help guide the surrogate decision-maker and should explain the concept of “substituted judgement” so the surrogate is better able to make decisions consistent with the patient’s values and preference. Such guidance can provide great relief to the surrogate and limit potential stress or guilt because decisions are reframed with the goal of determining and honoring what the patient would want. Clinicians can offer additional help by providing insights into the patient’s clinical status and making suggestions based on their assessment. (See 'Assessing and communicating prognosis' above.)

Written advance directives, the patient’s prior verbal statements, and information about how the patient lived their life can all provide useful guidance to the surrogate [23]. Asking such questions, rather than immediately requesting a decision about treatment, allows the surrogate time to consider the patient’s wishes and to reach a more measured decision. This process places the patient at the center of all discussions, demonstrates respect for the person the patient was, and helps build trust between clinicians and families/loved ones.

When a patient has not expressed their wishes in writing, asking the surrogate any of the following questions may be helpful:

●“Help me understand what they were like before they got sick. What was most important to them? What would they say in this situation?”

●“Have they ever said anything about how they would want to be treated if they could no longer make decisions for themself?”

●“Based on what you know of them, what do you think they would have wanted in this situation?”

●“Did they ever talk to you about what they would want should they get a lot sicker or if the treatments stopped working?”

●“Have they ever made statements about people who were very sick or in this type of situation?”

Some incapacitated patients have no available surrogate of any kind. Consequently, at least in the United States, some states have developed special mechanisms for authorizing treatment decisions on behalf of these “unbefriended” or “unrepresented” patients. However, such mechanisms are available in only a few states and often for only certain treatment decisions or specific patient populations [24].

Sometimes, emergency clinicians must make immediate decisions about the care of patients who are in extremis or declining rapidly, without prior discussion with the patient, family, or other decision-makers. In such circumstances, decisions made in the best interest of the patient are protected by law.

Rarely, when the right course of action is unclear, consultation with institutional administration, legal counsel, or medical ethics experts may be needed to determine the best decision. (See "Ethical issues in palliative care".)

Deciding on the level of care in the ED — For patients with severe but potentially reversible conditions, the aggressive care typically offered in the ED is appropriate. However, for patients who suffer from incurable illness or are nearing the end of life, clinicians should think carefully about what interventions are appropriate. Only those therapies that stand a reasonable chance of improving the quality or quantity of the patient’s life and are consistent with the patient’s preferences and goals should be offered. As an example, for a patient with advanced end-stage liver disease who has developed hepatorenal syndrome, it makes little sense to offer hemodialysis unless the patient is a potential candidate for transplant. (See "Palliative care for patients with end-stage liver disease", section on 'Other important prognostic variables'.)

In cases where limited care would seem appropriate, careful communication with the patient and their family or other decision-makers is essential. Often, such communication can be couched in language or concepts that the clinician has gleaned from prior discussions about goals of care. The conversation is made easier when the patient has expressed a clear preference for quality over quantity of life. (See 'Rapid goals of care discussions' above.)

When patients and families or other decision-makers insist on aggressive care but the provider feels that such care is not indicated, conversations should be more measured. We suggest that clinicians avoid saying that a therapy is being “denied” or is “futile.” Better alternatives include saying that a therapy is “not indicated” (when such treatment is not consistent with good care), “not beneficial” (when such treatment is unlikely to achieve the desired outcome), or “likely to make the patient feel worse” (when such treatment causes more harm than benefit). If time allows, the involvement of a clinician with an established relationship with the patient, their family, or other decision-makers can help facilitate discussion. (See "Palliative care: Medically futile and potentially inappropriate therapies of questionable benefit", section on 'Approach to patients who “want everything done”'.)

When patients and families or other decision-makers refuse to limit nonbeneficial interventions or when a decision-maker is not available, consultation with subspecialty palliative care services can be helpful. (See "Palliative care: Medically futile and potentially inappropriate therapies of questionable benefit", section on 'Palliative care consultations'.)

Where an agreement cannot be reached in a timely manner or if palliative care services are not available urgently, the emergency clinician should default to providing the therapy in question. One valuable strategy is performing a “time-limited trial,” during which further discussion and evidence gathering can be performed. Often, such trials allow loved ones time to gather, come to terms with the patient’s condition, and witness the patient’s lack of recovery or the burdens of nonbeneficial therapies [4,15,20,25]. (See "Palliative care: Medically futile and potentially inappropriate therapies of questionable benefit", section on 'Time-limited trials'.)

In patients with coronavirus disease 2019 (COVID-19) who are likely to have rapid clinical deterioration, goals of care conversations and advance care planning may be needed in the ED. Such discussions should focus on determining whether treatments such as intubation are aligned with the patient’s wishes and whether they are more likely to be beneficial or cause additional suffering. Palliative care consultation can provide support for such conversations [26-30]. Resources for advance care planning in the setting of COVID-19 are available elsewhere. (See "Advance care planning and advance directives", section on 'COVID-19 resources' and "COVID-19: Management of the intubated adult", section on 'End-of-life issues'.)

COMMUNICATING DIFFICULT NEWS — Discussing serious news or breaking “bad news” is a common communication task in clinical care. Virtually every clinical specialty requires doctors at some stage to be the bearers of sad, bad, or difficult news. (See "Discussing serious news".)

General guidance — Time constraints, lack of privacy, the absence of established relationships with patients or their loved ones, and bad news that is sudden or unexpected all contribute to the difficulty of sharing difficult news in the ED. Nevertheless, emergency clinicians must routinely communicate difficult news to patients and family members. Sometimes, the absence of existing relationships allows for a frank and open conversation in the ED about a patient’s disease, prognosis, and wishes, but the task of delivering bad news is never easy [31].

The following pointers can help emergency clinicians with this task:

●Avoid using vague language.

●Avoid using medical jargon or overly long descriptions of events.

●Avoid delays in delivering bad news whenever possible.

●Do not delegate the task to others (eg, trainees without sufficient experience).

●Avoid ending the discussion abruptly or prematurely whenever possible. Allow the patient or other loved ones time to process and ask questions.

●Consider having a nurse or social worker accompany you to provide support, especially if you have to leave the room.

Steps for delivering bad news in the ED — A six-step guide for delivering difficult news in the ED, based on the Education for Palliative and End-of-Life Care (EPEC) teaching project, is outlined in the table (table 4) [32]. We suggest using the “ask-tell-ask” approach, which allows the clinician to be guided by the patient and their family or other decision-makers regarding the volume of information, level of detail, and pace of discussion that work best. This approach is best for patients who have been dealing with progressive, life-limiting conditions for a period of time and have had prior discussions about their condition. (See "Discussing serious news", section on 'Approaches to breaking serious news: existing models and key elements'.)

Responding to requests not to share bad news — Occasionally, families or other loved ones ask clinicians to withhold bad news from the patient. The request not to disclose distressing information often stems from their desire to protect the patient or prevent them from losing hope, and these inclinations may be culturally based. Faced with such requests, the clinician must balance the requirements of patient autonomy and respect for the wishes of the family or other loved ones.

A strategy for responding to requests for nondisclosure starts before the potentially distressing diagnostic or prognostic information is shared with the patient in order to maintain as neutral an approach as possible (see "Ethical issues in palliative care", section on 'Requests from the family to withhold information'):

●Do not overreact. Acknowledge that this might be a difficult conversation and prepare to engage in a dialogue with the family/loved ones with a goal of reducing any anticipated tension.

●Talk with the patient about their desire for information; ask for the patient’s views and wishes in as neutral a manner as possible, frequently beginning with asking the patient what they understand.

●Attempt to understand the family’s/loved one’s viewpoint, and respond empathetically to their distress. Talk to them about what they believe the patient would want. It is common to assume the patient’s wishes are aligned with the family/loved one’s request, but this may not be so.

●State your views as your views, not as universal truths.

●Propose a negotiated approach to determine with the patient how clinical information should be managed, including what the patient wants to know, with whom the patient wants to share clinical information, and when they want information disclosed.

A concise guide is available from VitalTalk to assist the clinician in framing the delivery of serious news, but it is not specific to issues that are specifically encountered in the ED.

Meeting with family or loved ones of a recently deceased patient — Several tools have been developed to assist emergency clinicians when they must inform a family or other loved ones of an unexpected death [33-35]. Two such tools developed specifically for emergency clinicians are the GRIEV_ING (gather, resources, identity, educate, verify, give space, inquire, nuts and bolts, give) and the ABCDE (anticipate, be aware of yourself and your surroundings, conversation and concerns, debrief and documentation, ending the encounter) mnemonics for delivering serious news and news of death in the ED (table 5) [16,33,36,37]. These mnemonics address ED considerations such as location, provider safety, and handling intense emotions, which often follow news of sudden traumatic death.

When delivering news of a death, recognize that families and other loved ones do not have time to adjust, and concentrate on options or on the conversation [36]. Unfortunately, news about death cannot be softened; clinicians should use the “d word” (died, dying, or dead), noting that this may need to be stated directly after preparing loved ones (eg, “I’m afraid I have some bad news”). Clinicians should be prepared to attend to emotions as they arise. Whenever reasonable, loved ones should be assured that their responses are appropriate, that the medical care team did all that was possible, that the patient did not suffer unnecessary discomfort, and that different decisions by the family, such as coming sooner, would not have made any difference [31,36]. The NURSE acronym (name, understanding, respect, support, explore) for responding to strong emotions may be helpful (table 6). Often, it helps to have a social worker or chaplain present to help manage emotions, provide support, and allow the clinician to depart if necessary. (See "Discussing serious news", section on 'Attending to emotions as they arise'.)

Talking by phone with family or loved ones of a recently deceased patient — When a patient has died and the family or other loved ones are not available in the ED, we suggest that the next of kin or other closest loved one be told by phone to come to the ED because the patient is seriously ill or injured and things are not going well. This allows the person time to assimilate the news. They should be urged to have another individual drive them to the hospital, as they will likely be distracted. When the person cannot come to the ED and bad news must be delivered by phone, the following steps provide a reasonable approach [36]:

●Clarify your relationship to the patient (eg, “I am one of the resident doctors on the team…”).

●Clarify the relationship between the patient (use their name) and the person you are calling.

●Ask if the person is able to talk. If the person is unable to continue the conversation, give them an “out” with a definite time to reconnect (eg, in 15 minutes).

●Assuming the person can speak, ask them to be seated.

●Briefly summarize the events that led to the decedent’s coming to the ED, and describe the patient’s critical condition.

●Provide a warning that bad news is coming (eg, “I’m afraid I have some bad news”).

●Clearly state the outcome (eg, “Despite our best efforts, the [injuries or illness] was so severe that unfortunately your [loved one] died”).

●Offer condolences (eg, “I’m sorry, and I wish the outcome was different”).

●Allow the person time to ask questions and to express disbelief and emotion.

●Provide a telephone contact for follow-up questions (ideally someone who provided care), and inform them of member where the body will be taken.

●Inform the patient’s primary care clinician.

PALLIATIVE CONSULTATION, HOSPICE REFERRAL, AND PATIENT DISPOSITION

When to request palliative care consultation in the ED — As noted above, there are several types of patients with advanced or life-threatening illness who may benefit from subspecialty palliative care consultation in the ED. A screening tool to help determine whether palliative care consultation would be useful for a particular ED patient is described in the table (table 7) [38-48]. (See "Palliative care for adults in the ED: Concepts, presenting complaints, and symptom management", section on 'Conditions commonly managed in the ED that benefit from palliative care'.)

Palliative care consultation teams can provide the following services in the ED [44,49]:

●Moderation of difficult conversations with patients and families/loved ones

●Clarification of goals of care

●Clarification of disease stage and prognosis

●Advanced symptom management

●Admission to inpatient palliative care units (if available)

●Coordination with outpatient providers, home health or hospice teams, and long-term care facilities

●Assistance with withdrawal of nonbeneficial treatments

●Bereavement support for the family and others

●Determination of appropriate disposition

An ED visit by a patient with advanced, life-threatening illness, such as cancer, provides an opportunity to gain access to palliative care services, which may improve overall quality of life and other outcomes [50] (see "Benefits, services, and models of subspecialty palliative care", section on 'Rationale for palliative care'). Of note, palliative care teams generally do not need to be consulted in order to make a hospice referral; most ED social workers can make such referrals. (See 'Referring to hospice from the ED' below.)

Many ED patients have unmet palliative care needs that are revealed by appropriate screening. As an example, an observational study of 817 patients with active cancer presenting to the ED identified an unmet palliative care need in over half [51]. Newer models of ED-embedded or ED-integrated palliative care services are now emerging as clinically meaningful and operationally viable ED options for optimizing patient care in the seriously ill [52,53]. There is also an increased focus on measuring quality and outcomes of such ED-based palliative care interventions [54]. The ED clinician therefore plays an important role in coordinating care across the outpatient to inpatient health system continuum for many patients living with serious conditions such as advanced cancer [55,56].

In major health crises such as a pandemic, palliative care providers have increased demands in support of patients and their loved ones, but can also be called on to enhance the wellbeing of the health care team, who are under increased stress [57].

Disposition planning — The disposition of ED patients who are at the end of life will vary according to individual supportive needs, financial resources, and social support. Emergency clinicians should consult social workers and case managers to assist with disposition planning as early as possible to allow the time necessary to make the necessary calls to professionals outside the hospital and to share the information necessary to determine disposition.

If the patient is hemodynamically stable and comfortable, and no intervention is being made that cannot be provided outside the hospital, the patient is appropriate for discharge. If the patient can be cared for by family or others at home, the patient can be discharged home with appropriate support (eg, home health, hospice, or palliative care, which can be delivered in the home in some circumstances). (See "Palliative care delivery in the home".)

If the patient cannot be cared for at home, they must be discharged to a health care facility, typically long-term care or an inpatient hospice. Eligible patients may be placed under hospice care (home hospice or inpatient hospice) directly from the ED [3]. Some hospitals have inpatient hospice beds or units within their own medical facility. (See 'Referring to hospice from the ED' below.)

Occasionally, it is necessary to admit the patient to the hospital while the details of disposition are arranged. Admission is warranted for patients whose symptoms remain uncontrolled, whose clinical status remains unstable, for whom there is no safe alternative disposition, or who are actively dying (assuming this is consistent with the patient and family or other loved one’s wishes). In some institutions, hospital policy or clinical/human resources may drive where the patient can be appropriately cared for in the hospital. As an example, in some hospitals, a patient requiring mechanical ventilation (even if chronically) or receiving particular medications for palliative sedation must be cared for in a monitored setting or intensive care unit. (See "Palliative sedation", section on 'Process'.)

Regardless of the ultimate disposition, clear communication among all involved parties is important. The emergency clinician must make certain that the admitting team, regardless of their location, is aware of the patient’s condition, code status, and goals of care, and that the patient and their family/loved ones understand where the patient will be placed.

Referring to hospice from the ED — Hospice is most appropriate when patients desire not to return to the hospital and require assistance at home with medication management, symptom control, activities of daily living, and adjustment. Often, these are patients who are interested in “comfort care only.” Generally, this means that the patient wants interventions and support that will alleviate symptoms and maintain quality of life rather than prolong it. Patients who meet hospice eligibility criteria may be referred directly to hospice from the ED. A hospice representative may come to the ED for the initial patient interview and assessment, with follow-up expected at home within 24 hours. Sometimes arrangements at home may take more time; in such cases, it is appropriate to consult the palliative care team or admit the patient as outlined above.

Hospice eligibility in the United States — In the United States, home hospice care for patients over 65 years of age or for those under 65 with long-term disability is covered through Medicare. The Medicare hospice benefit model is also used by many private insurers and health maintenance organizations (HMOs) for their hospice programs. Most states also cover hospice for their Medicaid beneficiaries.

The criteria for Medicare’s hospice benefit are reviewed separately, but they may be summarized as follows [58] (see "Hospice: Philosophy of care and appropriate utilization in the United States", section on 'The United States Medicare hospice benefit'):

●The patient’s prognosis is six months or less if the disease runs its usual course, as determined by the attending clinician and hospice medical director. In cancer and many non-cancer diagnoses, Medicare’s hospice criteria must be met (table 8). Any primary diagnosis can qualify a patient for hospice care. However, frailty alone is insufficient to qualify for hospice.

When patients do not fall into the categories for which there are clear criteria, patients can qualify for hospice under “general indicators of decline.” These may include inability to perform activities of daily living, decline in weight, and decline in nutrition. In addition, patients must have a documented complication of their debility, such as urinary tract infection, decubitus ulcer, or pneumonia (table 9).

●The patient or family or other decision-makers consents to the hospice philosophy, in which the alleviation of symptoms of illness and the provision of comfort and quality of life are prioritized over treatments intended to extend life.

Hospice provides many benefits for appropriate patients and reduces the number of ED visits at the end of life. These benefits are discussed in detail separately. It is important to know that no one, not even hospice, will provide 24/7 care in the home, unless the patient or those caring for them are able to pay out of pocket. For this reason, it is important for providers to clarify that even with hospice involvement, families or other informal care providers are the ones taking on the bulk of the caregiving responsibilities at home. (See "Hospice: Philosophy of care and appropriate utilization in the United States", section on 'Benefits and limitations of hospice'.)

Hospice care may be provided at any location the patient calls home (eg, private residence, assisted living, or long-term care). When patients have a symptom crisis at home, insurance will often pay for the patient to be admitted to a hospice residence for up to five days in order to get relief (this is known as “hospice general inpatient care” [GIP]). Insurance often pays for short stays to give caregivers respite as well.

Hospice can be set up in most places within 24 hours of discharge. Still, we recommend that patients be provided with the medications and guidance necessary to manage symptoms for up to 48 hours postdischarge from the ED. Note that many states now limit the number of days of opioids that can be provided upon discharge from the ED; some states do not exempt patients at the end of life.

If a patient cannot be cared for safely at home or time is needed to provide equipment or medications, the patient may be admitted to an observation unit or inpatient ward until a discharge plan is put into place by the social services, hospice agency, or palliative care team.

When patients can no longer be cared for by their families or others at home (even with the support of home-based hospice), placement in a hospice residence or long-term care unit may be needed. This often has financial implications for the patient and family or other loved ones, who become responsible for the cost of room and board.

Outside the United States — Outside the United States, some different regions and programs have their own eligibility criteria, which are not as strictly defined as in the United States. In some countries, such as Canada, patients qualify for hospice when a clinician can answer “no” to the “surprise question” (ie, “Would I be surprised if this patient died within 12 months?”) [59]. Often, the decision to enter hospice follows a decision to focus on comfort rather than cure, and acceptance that resuscitation will not be used in order to allow for a natural death [60].

On the other hand, in Europe, there are no formal criteria for “admission” to hospice, and “hospice” represents the philosophy of care rather than a formal program setting in which care is provided [61]. (See "Palliative care and hospice outside of the United States".)

PATIENT DEATH IN THE ED

Imminently dying patients in the ED — Dying patients sometimes present to the ED for care. Some are in cardiac arrest and expire within minutes, while others are in the end stages of a chronic illness and die within hours or days. Although the ED environment can present challenges when caring for a dying patient, a number of helpful measures can be taken once the goals of care are established [9,62,63]. Therefore, whenever possible, the first step is to hold a rapid goals of care discussion. (See 'Rapid goals of care discussions' above.)

If the patient does not wish to receive life-sustaining treatment, the following steps are generally useful:

●Counsel the family and other loved ones about what to expect as death progresses. We recommend that providers prepare loved ones for the possibility that the dying process may take longer than expected.

●Move the patient and loved ones to as private a space as possible, such as a corner bay or isolation room. Provide adequate seating.

●Turn off or disable alarms on monitors and pulse oximeters.

●Place an intravenous line (IV) as necessary for palliative medications that may be needed for symptom management.

●Assess and reassess for any signs of distress.

●Designate an ED staff member to serve as the primary contact; try to minimize staff turnover while the patient is dying.

●Provide treatment for distressing symptoms. (See "Palliative care for adults in the ED: Concepts, presenting complaints, and symptom management", section on 'Symptom assessment and management'.)

●Discontinue unnecessary blood draws, diagnostic imaging, and other interventions. IV fluids, tube feedings, and total parenteral nutrition may prolong suffering and should not be administered.

●Deactivate automatic implantable cardiac defibrillators with a magnet so inadvertent shocks are not given. Pacemakers should not be deactivated in pacemaker-dependent patients.

While potentially controversial to some patients and providers, the discontinuation of a permanent pacemaker in patients who are not permanent pacemaker dependent is generally considered reasonable if desired by the patient; this decision amounts to withholding rather than withdrawing therapy. (See "Management of cardiac implantable electronic devices in patients receiving palliative care".)

●Adjust the lighting in the room, provide tissues, and provide food and drink as appropriate.

In some cases, after a goals of therapy discussion or code status clarification following a resuscitation, families or other decision-makers may consider withdrawal of care. The following are some things that the emergency clinician may want to do:

●Identify family/loved one’s needs and concerns. Ask whether other persons are on their way to the ED or need to be present or called before withdrawing care.

●Offer to call clergy of their choice.

●Assure loved ones that organ donation is not the purpose of withdrawing care.

●Explain what may or may not happen after withdrawal of care. Underscore the uncertainty of the timing of death after withdrawal.

●Give the family time, and allow them to leave the room, if desired, while tubes are removed and machines are turned off. Providing suction, a dose of morphine, and elevating the head of the bed often help with symptoms.

●Provide adequate seating for loved ones, as well as appropriate lighting and tissues.

●Offer to stay in the room (or have a staff member do so) for some period; return to check on them regularly as circumstances in the ED permit.

Managing bereavement in the ED — Hospital support for the bereaved should be provided whenever a patient dies in the ED [64-75]. We recommend that emergency clinicians designate a member of the care team (eg, social worker, chaplain) to be with families or other loved ones in such circumstances. Families/loved ones should be provided with a name and phone number of someone that they can call after discharge if they have any questions. The emergency clinician may need to inform the family of bereavement support in the community for those at high risk for a complicated grief reaction [66]. (See "Prolonged grief disorder in adults: Epidemiology, clinical features, assessment, and diagnosis".)

Circumstances where loved ones members are at a higher risk of complicated grief include:

●Unexpected or violent death (trauma); difficult or troubling circumstances of the death

●Death of a child, miscarriage, stillbirth, or infant death (see "Sudden unexpected infant death including SIDS: Initial management", section on 'Hospital emergency department intervention')

●Lack of social supports

●History of psychiatric illness

Follow-up with the bereaved can take many forms. Some EDs designate an administrator responsible for condolence care, who sends a letter to the next of kin within a short time of the patient’s death. The letter includes contact information for a bereavement counselor. Other EDs provide pamphlets or brochures to take home that include information about common grief reactions, concerns of children and how to respond to them, and support groups and resources. Many hospitals offer some form of bereavement services, possibly including a counselor, family/loved ones support personnel, chaplains, or palliative care team members. (See "Bereavement and grief in adults: Management".)

Common questions and issues following patient death in the ED — Emergency clinicians should expect questions from loved ones about the cause of and circumstances surrounding the patient’s death. These may include why the patient died, what treatments were given, whether the deceased was conscious or in pain, and what happens to the body after it is taken from the ED [64,66]. It is useful for emergency clinicians to know their institution’s policies concerning how long a body can stay in the ED and where a body is taken thereafter (eg, a morgue), and what the state regulations pertaining to organ and tissue donation are.

With shift changes, a clinician other than the one who provided care to the deceased may need to discuss care with or provide guidance to loved ones who arrive later. In these cases, face-to-face sign-out and thorough documentation are critical.

Helpful practices after a patient death in the ED include the following:

●Create a private grieving room for families/loved ones adjacent to or near the ED containing chairs, a table, a telephone, writing materials, and tissues.

●Ensure that there is a knowledgeable staff member (eg, social worker, bereavement counselor) who can serve as a liaison between clinicians and family/loved ones. This liaison can help provide comfort and psychological support, gather necessary information, and convey updates.

●Whenever possible, give loved ones the opportunity to see and say goodbye to the recently deceased. The viewing area should be clean, and those involved should be prepared about their loved one’s appearance and the presence of any medical equipment (eg, tracheal tube in place). Allow adequate time for loved ones to say their goodbyes. Provide support regardless of their decision whether or not to view the deceased.

●If an autopsy or medical examiner review is needed (eg, sudden, unexpected death), the next of kin should be given a brief, clear explanation why, and contact information should be provided for a staff member who can answer further questions.

●Identify and respect cultural beliefs regarding the recently deceased, and accommodate these as much as possible.

●Request chaplaincy support (may offer memorial services).

Clinician bereavement — Deaths, particularly sudden events in previously healthy persons or in the young, can be very stressful and challenging for emergency clinicians, both physically and mentally [35]. Team debriefing sessions, critical incident debriefing, and attending memorial services for patients who have died may assist with coping. Some palliative care consult services make themselves available to help moderate debriefing sessions after traumatic deaths and mass casualty incidents.

SOCIETY GUIDELINE LINKS — Links to society and government-sponsored guidelines from selected countries and regions around the world are provided separately. (See "Society guideline links: Palliative care".)

SUMMARY AND RECOMMENDATIONS

●Palliative care in ED – Many patients seek care in the emergency department (ED) for acute crises related to chronic, life-threatening illnesses, especially as clinical status deteriorates and they approach the end of life. Most hospitalizations are initiated from the ED, and decisions about life-sustaining interventions (eg, initiation of mechanical ventilation) are often made there, establishing a trajectory of subsequent in-hospital care. Early involvement of palliative care, whether provided primarily through ED providers or secondarily by palliative care consult services, can substantially improve patient care. (See "Palliative care for adults in the ED: Concepts, presenting complaints, and symptom management", section on 'Why the integration of palliative care in the ED is important'.)

●Symptom assessment and initial management – Patients with serious life-threatening illness often present to the ED with needs amenable to palliative interventions. Such problems include symptom management (particularly pain, dyspnea, and fatigue), worsening frailty, altered mentation, social problems, and questions about prognosis or treatment (table 10). The initial steps for managing pain, dyspnea, and other symptoms are reviewed separately. (See "Palliative care for adults in the ED: Concepts, presenting complaints, and symptom management", section on 'Symptom assessment and management'.)

●Prognosis – Providing some prognostic information is important to help patients and their loved ones understand the need to develop an advance care plan. When attempting to estimate prognosis in the ED, clinicians should consider disease state, functional status, clinician judgment, and expert opinion. Prognostication tools that are specific to a disease (eg, the Palliative Prognostic Index for patients with terminal cancer (table 1)) and nonspecific (eg, the Palliative Performance Scale) are available. (See 'Assessing and communicating prognosis' above.)

●Goals of care – Discussions about goals of care should be conducted in a culturally sensitive manner with appropriate language that respects the patient’s values and preferences. Beginning goals of care conversations with questions about specific interventions, such as tracheal intubation, can be overwhelming. Whenever possible, a structured, stepwise approach is preferred. The table summarizes an approach to holding a rapid goals of care conversation in the ED (table 3). (See 'Rapid goals of care discussions' above.)

For patients with severe but potentially reversible conditions, the aggressive care typically offered in the ED is appropriate. However, for patients who are nearing the end of life, only those therapies that stand a reasonable chance of improving the quality or quantity of the patient’s life and are consistent with the patient’s preferences and goals should be offered. (See 'Deciding on the level of care in the ED' above.)

●Delivering difficult news – A six-step guide for delivering difficult news in the ED is outlined in the table (table 4). (See 'Communicating difficult news' above.)

●Palliative care consultation – Common “triggers” for subspecialty palliative care referral and interventions initiated in the ED are available from several groups; a suggested approach to screening for an ED subspecialty palliative care referral is outlined in the table (table 7). (See 'When to request palliative care consultation in the ED' above.)

●Hospice referral – Hospice is most appropriate when patients desire not to return to the hospital and require assistance at home with medication management, symptom control, activities of daily living, and adjustment (table 9). Often, these are patients who are interested in “comfort care only.” Patients who meet hospice eligibility criteria may be referred directly to hospice from the ED. (See 'Referring to hospice from the ED' above.)

●Imminently dying patient – When caring for the imminently dying patient, the clinician can take a number of helpful measures once the goals of care are established. These measures are described in the text. In some cases, after discussing goals of therapy or a code status clarification, families or other loved ones may withdraw care. (See 'Imminently dying patients in the ED' above.)