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Palliative Social Work in the Emergency Department 

Palliative Social Work in the Emergency Department
Chapter:
Palliative Social Work in the Emergency Department
Author(s):

Robin Rudy Lawson

DOI:
10.1093/med/9780199739110.003.0007
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A person doesn't die when he should but when he can.

—Gabriel Garcia Marquez

Key Concepts

  • Patients with serious illness and their families present to emergency departments (EDs) with symptom distress, caregiver distress, and for management of end-of-life issues.

  • The palliative care needs of patients and families in the ED often revolve around pain and symptom management, clarification of advance directives (ADs), and death in the setting of the ED environment.

  • Both ED and palliative social workers can improve the care that seriously ill patients receive in the ED by identifying unmet needs and providing specific palliative social work interventions.

Introduction

The emergency department (ED) typically provides care for people with severe trauma or acute illness, and for those with minor acute problems that require rapid assessment. Increasing numbers of people with chronic diseases and those facing end of life are also being admitted to EDs (Chan, 2004; Tardy et al., 2002). Even though overall cancer deaths have decreased recently, ED visits for cancer-related emergencies are on the rise (Rondeau & Schmidt, 2009). Patients with serious illness and their caregivers arrive in the ED seeking assistance with distressing symptoms, caregiver distress, and for some patients and/or caregivers, fears about dying at home (Chan, 2004; Marco & Shears, 2006; Tardy et al., 2002;).

A burgeoning elderly population will only increase the number of people with significant life-limiting illnesses who present to the ED. The Centers for Disease Control and Prevention (CDC) (CDC & The Merck Company Foundation, 2007) estimate that by 2030, the number of Americans aged 65 and older will more than double and constitute 20% of the population. At nearly 10.2 million visits, people aged 75 and older had the second highest per-capita ED visit rate (CDC, 2008). Rapid triage and diagnosis can be difficult in older patients who may present with multiple diseases, numerous medications, and functional and cognitive impairments (Hwang & Morrison, 2007).

The relationship between palliative care and emergency medicine is in its infancy. There has been increasing interest among both emergency medicine and palliative medicine clinicians in improving the care that seriously ill patients receive in the ED while also moving palliative care consults upstream (Meier & Beresford, 2007). In 2006, the American Board of Emergency Medicine co-sponsored palliative medicine as a recognized subspecialty and the Education on Palliative and End of Life Care Project (EPEC) developed a new curriculum specifically for emergency medicine professionals.

Building relationships between palliative care and emergency medicine departments is dependent on many factors, including the goals of the institution, the availability of resources from the palliative care service, and a commitment by both departments to improve the care for seriously ill patients in the ED. Palliative social workers, and ED social workers with specific training, can play instrumental roles in fostering collaboration between departments, identifying patients/families with unmet palliative care needs, and providing specific interventions to improve the care of seriously ill patients in the ED.

Challenges in Providing Palliative Care in the Emergency Department

Modus Operandi

Lawson, Burge, McIntryre, Field, and Maxwell (2009) affirm that EDs can be chaotic, pressured environments where diagnosis and treatment for acute or traumatic events are the main goals. Patients are prioritized by the seriousness of their illness or injury, which produces an environment of persistent change and urgency (Chan, 2004). The most markedly ill or injured patient is given the most attention and care and is identified as the person who is at highest risk for an unforeseen or undesired death (Chan, 2004). Chan (2004) affirms that society's and community's standards for ED care include the assumption of consent for complete aggressive measures to prevent sudden death. Asking a patient/family to switch gears and consider palliative care or hospice can appear incongruous with these standards and requires clear conceptualization of the goals of care in the setting of extensive groundwork and collaboration among palliative care, emergency medicine, and primary care providers.

Environment of the Emergency Department

The physical environment of the ED is not conducive to providing palliative care. While the use of curtains rather than walls allows clinicians quick physical access to patients and increases visual and auditory awareness, it limits privacy for patients, families, and staff. These structural realities and the consequent lack of privacy, as in the intensive care unit (ICU), create a setting where family members are acutely aware that their own distress might agitate others (Lloyd-Williams, Morton, & Peters, 2009). As most EDs are on the ground floor of hospitals, they are typically windowless to protect patient privacy. Hwang and Morrison (2007) assert that this lack of natural light can be disorienting to both older patients with cognitive impairments as well as patients with a delirium or confusion. Finally, the constant noise from monitors that sound alarms, clinician discussions, and collective voices all in the same space contribute to communication difficulties for the hearing impaired (Hwang & Morrison, 2007); and for many patients and families, this creates a chaotic, noisy environment that is not ideal for care of seriously ill patients. Yet with skilled, vigilant, and collaborating clinicians there is an opportunity to intervene effectively and focus on the palliative care needs of patients and their families.

Inadequate Information

Outside of their own clinical assessment, ED physicians and nurses have little information at hand to help guide decisions regarding patient care. Patient report and information from caregivers as well as the accompanying ambulance report are useful but limited and calls to the patient's primary physician/specialist may go unanswered or may only provide the necessary information to get the patient admitted to a floor. Many patients with life-limiting illnesses present to EDs in crisis, either from an acute illness event, severe symptom distress, or a psychosocial crisis. Emergent medical issues take priority and a comprehensive identification of palliative care issues such as advance directives (ADs) and prognosis are secondary to a busy staff who do not have the necessary time to spend with patients and families who look to them to act. Generally, staff are not familiar to patients and families and while crises can build rapport and trust and an immediate dependence, at other times these realities create a barrier and mitigate against the informed and emotional communication that is often at the basis of decision making in the setting of life-threatening illness. Finally, the nature of the emergency may mandate a discussion of ADs, goals of care, and resuscitation decisions concurrently with the provision of emergent medical interventions.

Compared to the emergency physician, the patient's primary doctor typically has the benefit of knowing the patient from time of diagnosis through end stage, has an understanding of the patient's life history, the strain of chronic suffering, the patient's prognosis, and the patient's wishes regarding life-prolonging therapy (Tardy et al., 2002). In Smith et al.'s (2009) study, emergency physicians reported that they typically had no documentation regarding the patient's conversation with their primary physician about goals of care. Discussing goals of care in the ED requires skillful communication focusing on the current reality and including inquiry about any discussions that may have already occurred with the patient's primary care team.

Palliative Care alongside Curative Care?

Some ED clinicians may have difficulty understanding why patients with life-limiting illnesses and their loved ones come to the ED for assistance. They may view an ED visit as negligence on the part of the patient or family in planning for disease progression or a collapse of caregiving coping skills (Rondeau & Schmidt, 2009). ED staff may also believe that it is the primary provider's fault for not foreseeing the patient's end-of-life needs (Rondeau & Schmidt, 2009).

When emergency clinicians (physicians, nurses, and social workers) were asked about patients with serious illness in the ED, they believed that fears about managing worsening symptoms such as pain and dyspnea contributed to families' decisions to come to the ED for care (Smith et al., 2009), which were acceptable reasons to the staff. Most emergency physicians and nurses have the training and experience to recognize patients with serious illness, but identifying the specific palliative care needs and how to intervene may require additional training or the expertise of a palliative care consultation team (Quest, Marco & Derse, 2009).

Role of the Emergency Department Social Worker

The ED social worker is a key player in identifying at-risk patients and families, providing crisis interventions, and assisting with “social admissions.” Social admissions are nonmedical admissions to the hospital, including elder abuse/neglect, psychosocial emergencies, and caregiver crises. A cost–benefit analysis of social work services in the EDs performed by Gordon (2001) found that large urban EDs would have a net benefit if they had a full-time social worker but only if the social worker could prevent social admissions and reduce the amount of time that doctors and nurses spend on the social needs of patients.

The ED social worker conducts psychosocial assessments, provides bereavement counseling for deaths in the ED (Wells, 1993), and may be heavily involved in the pediatric ED, intervening with pediatric psychiatric admissions, child abuse and neglect, and severely ill children. They provide emotional support to patients and families experiencing a crisis and provide counseling as needed (Wells, 1993). Due to their education and experience, ED social workers also serve as a resource for medical-legal (domestic violence, sexual assault) and guardianship issues (Bristow & Herrick, 2002). They are charged with making appropriate referrals to community resources and may assist with discharge planning, including setting up transportation and/or home care services (Bristow & Herrick, 2002).

Because of their extensive knowledge of ED processes and protocols and ability to rapidly identify patients and families in crisis, ED social workers are well positioned to identify patients and families with serious illness. With the proper tools, such as a comprehensive palliative care assessment and some targeted training, ED social workers can collaborate with the ED staff and palliative care clinicians to identify specific palliative care needs. With specialized training in palliative care principles and focused social work assessment and intervention skills, they can also intervene to guide and enhance a plan of care consistent with the stage of illness and the patient and family's goals and values.

Palliative Care Emergencies

Pain Management

Emergency clinicians assess a variety of pain syndromes, from patients with sickle cell disease who present in a pain crisis, to the head and neck oncology patient with esophageal mucositis, which causes severe pain, discomfort, and interferes with nutrition. Pain is the chief complaint for adult patients presenting to EDs (CDC, 2008), yet there are many barriers to effective pain management for this population. Todd et al. (2007) examined the current state of pain management in 20 EDs in North America and found that 83% of patients had a pain assessment, but reassessments were not common. They also noted that after a median delay of 90 minutes, only 60% of patients who needed pain medication received an analgesic and 74% of patients were released in moderate to severe pain (Todd et al., 2007).

Other barriers to optimal pain management in the ED include well-documented ethnic and gender disparities. In a study looking at patients who presented with extremity fractures, white patients were significantly more likely than black patients to receive analgesics (74% versus 57%), even though pain complaints were similar in the medical record (Todd, Deaton, D'Adamo, & Goe, 1997). Black patients had a 66% greater chance than white patients of not receiving pain medication (Todd et al., 1997). In a study by Chen et al. (2007) looking at the administration of analgesia for acute abdominal pain, women were less likely than men to receive any analgesia (60% vs. 67%) even with similar pain scores, and they were 13% to 25% less likely to be given opioid analgesia than men.

Clinicians' concerns about the use of opioids in pain management either for patients with chronic pain or for patients with life-limiting illnesses persist in the ED. Fears of causing opioid addiction or that prescribing opioids encourages an already established addiction means that patients with chronic pain who present to the ED receive inadequate treatment from clinicians (Derse, 2006). Fears that clinicians will hasten death and cause respiratory depression in patients with cancer or other life-threatening conditions also prevents adequate pain management in palliative care patients (Derse, 2006).

Emergency nurses, as the clinicians who administer pain medications, may be particularly concerned about the use of opioids in the ED. Tanabe and Buschmann's (2000) study of emergency nurses knowledge of pain management principles identified significant deficits in two domains: comprehending and differentiating “addiction,” “tolerance,” and “dependence”; and education regarding various pharmacologic analgesic principles. Education and training in pain management with opioids and in patients with serious illness includes not only pharmacologic principles but also an understanding of ethical principles and legal parameters so that clinicians treat pain with confidence that they are making thoughtful and informed medical decisions.

Advance Directives

Patients with life-limiting illnesses who present to EDs at the end of life pose a unique challenge to emergency clinicians if treatment decisions are to be made without knowledge of the patient's wishes. It may be difficult for clinicians to evaluate a person's decision-making ability in the setting of stress or pain and without knowing the patient's baseline cognitive functioning (Rondeau & Schmidt, 2009). For patients who do not have the capacity to make their own decisions, the responsibility of decision making in a crisis may be left to others who might very well be unaware of their loved ones wishes. Partners, life partners, or those in domestic unions who accompany loved ones to the ED may find that ED staff are unaware or confused about whether they can legally include them in decision making for cognitively impaired patients. Emergency clinicians may feel particularly helpless when a nursing home resident who is cognitively impaired comes to the ED without ADs. It may be impossible to find family and get in touch with the patient's primary physician in the timeframe available and can be particularly distressing if the patient is actively dying and decisions must be made.

In Smith et al.'s (2009) survey of emergency providers' experiences, beliefs, and attitudes with respect to palliative care, clinicians noted three problems with ADs: when available, they were too broad to be helpful; sometimes the AD conflicted with the wishes of the health care surrogate; and providers resuscitated patients with valid do not intubate (DNI) or do not resuscitate (DNR) orders. Advance directives may have limited usefulness for emergency clinicians because they may be unaware of the context in which these documents were completed and thus unaware of situation-specific wishes of the patient. For example, a patient may want intubation for shortness of breath or resuscitation when recovery to his or her current level of functioning is anticipated, but not if it is expected that he or she will be ventilator dependent. ED clinicians may not have the time nor the medical information needed to know whether the current medical reality fits the parameters of the AD and will err of the side of intervention, believing that the intervention can be withdrawn later, whereas allowing the death to occur is an irrevocable decision.

When the advance directive is in conflict with the health care surrogate's wishes and the patient is incapacitated, clinicians may be unsure as to how to handle this incongruity and default to providing life-prolonging care partly due to litigation fears (Smith et al, 2009). At the same time, there are ethical and legal issues for ED physicians who do not respect a patient's wishes or ADs. Derse (2006) states that emergency physicians typically use the maxim, “always err on the side of life” and assert that any dialogue regarding terminating these treatments can take place in the ICU after the treatment has begun. However, the legal consequences for not respecting a patient's wishes include “actions for battery, lack of consent, and medical malpractice” (Derse, 2006). As well as legal ramifications, the physical and emotional consequences of resuscitating patients who either had valid DNR/DNI orders or who had verbally requested DNR/DNI are complex and impact the patient and family well beyond the events in the ED. Choosing not to start a treatment (withholding treatment) is very different philosophically and emotionally for staff and family members than withdrawing a treatment that has been initiated (Derse, 2006).

Unique Challenges for Emergency Clinicians

In a survey conducted by Heaston, Beckstrang, Bond, and Palmer (2006), emergency room nurses perceived that the major challenges in providing end-of-life care in the ED were high caseloads, working with family members' emotions, the poor layout of the ED, lack of knowledge of the patient's wishes for treatments, and decisions to obviate the patient's known wishes because of a family member's desire to initiate or continue life-prolonging treatment and the inability of the staff to mediate this discrepancy.

As the ED is seen as a place of transition and triage, there may not be as much emphasis on the value of ADs. In addition, emergency clinicians whose goals are to stabilize the patient and get the patient admitted to a hospital unit or sent home may overlook valuable communication regarding the patient's wishes. Another challenging task is to determine whether the context of the current medical crises meets the context described in the AD. For example, a patient may choose not to be resuscitated if his cancer is the cause of his dying but may very well wish to have full support if he has pneumonia where treatment will allow return to a prior level of function. Where there are language differences, family members may be protective of patients who do not speak English or who, because of cultural, spiritual, or emotional reasons, may be unaware of their diagnosis and prognosis. Patients and family members may either have difficulty providing this information due to language differences or may withhold it out of fear that the information will be used to inadvertently harm the patient or deprive the patient of needed quality care. Home health aides or patient care attendants who care for patients at home and in the ED—providing personal care such as assistance with toileting and eating, helping with transfers within the hospital, and performing administrative tasks—spend a considerable time with patients and families and can be valuable resources for emergency clinicians seeking additional information about the patient and family.

Dying in the Emergency Department

Patients who are actively dying and are deemed unable to survive a transfer or hospitalization may remain in the ED instead of occupying an inpatient bed that could be used for someone with a reversible or treatable condition (Chan, 2004). Even the expected death of a patient who is at end of life is emotional and stressful for emergency clinicians. Charged with diagnosing and treating patients, emergency clinicians may feel helpless and uncomfortable with the adaptation required to move from emergency intervention to working with dying patients and the grief of family members. Fear of not knowing all the answers or being blamed and experiencing the emotions of patients and families are some of the perceived challenges in working with families in death notification and bereavement care in the ED (Chan, 2004; Olsen, Buenefe, & Falco, 1998). In some cases, clinicians may view the patient's death as preventable, prompting feelings of guilt, inadequacy, or failure among emergency clinicians (Olsen et al., 1998).

People who die abruptly and without warning in the ED, victims of violence or trauma, and those who commit suicide are potential cases for the medical examiner or coroner (Chan, 2004). The trauma room is regarded as a potential crime scene (Chan, 2004), and the person who died is “evidence,” which can be depersonalizing for surviving family members who may also be interviewed by law enforcement and treated suspiciously. Emergency clinicians such as chaplains and social workers play a key role in the provision of emotional, spiritual, and cultural care pertaining to death and bereavement (Quest et al., 2009; Wells, 1993) and are specifically called upon for sudden, unexpected death. They can also assist to create a responsive environment where cultural or spiritual rituals are invited and respected in preparation for and at the time of death (Campbell & Zalenski, 2005).

Whereas common traditional practice used to be to separate the family from the patient during resuscitation and invasive procedures, there is mixed evidence in support for the presence of families at the patient's side (Boudreaux, Francis, & Loyacano, 2002). A critical review of the literature found that nurses may have a more approving opinion toward family presence during invasive procedures than physicians and that although family may want to be present and believe it is helpful, their presence may not actually reduce the patient's distress (Boudreaux et al., 2002). In Doyle et al.'s (1987) study of family presence during resuscitation attempts, 97% of families would witness it again, 76% believed their grieving was made easier, 67% thought their presence helped the patient, and 100% felt confident that everything had been done to save their loved one.

The death of a child in the ED is devastating. Allen (2009) describes the responsibility that a clinical nurse specialist can have in creating standards of practice for children who die in the ED, and these suggestions can be the shared work of interdisciplinary staff. She describes enlisting chaplain support, gathering community resources for families, providing mementos that represent contact with the child (pillow, etc.), educating staff on pediatric end-of-life care, supplying caregivers with support, and contacting families for bereavement follow-up (Allen, 2009). Truog, Christ, Browning, and Meyer (2006) highlight the importance of a formal debriefing session facilitated by a social worker so that staff can share feelings about the uncertainty, powerlessness, and hopelessness that often result from the sudden, traumatic death of a child. Knazik et al. (2003) also emphasize the importance of communicating with the child's “medical home” (providers that cared for the child prior to her death) and ensuring that critical incident stress management is available for ED staff.

Opportunities for Palliative Social Workers in the Emergency Department

Palliative social workers (PSW) can play an important role in introducing palliative care principles in the ED and, when death occurs, improving the end-of-life care provided to patients and families. By being able to identify patients and families with unmet palliative care needs, the PSW can serve as a liaison between the ED physician, nurses, and the palliative care team to ensure that these patients are seen by the palliative care team either during their hospitalization or as an outpatient if they are discharged from the ED to the community. Communication with the patient's primary physician is essential prior to any contact by the palliative care team to ensure that the patient's existing relationships are respected, to avoid duplication of service, and to reinforce the services of palliative care as complementary to primary clinicians. ED physicians who contact the primary physician while their patient is in the ED can convey needed clinical information and seek the primary physician's understanding of the patient, the patient's illness, and the patient's goals.

Palliative social workers who are introduced to the ED staff in a collaborative, respectful process can serve as the “face” of palliative care in the ED. They must be available and responsive because emergency clinicians want their patients to receive the best possible care and given the nature of the environment, responsiveness is a key to successful collaboration and excellence in care of patients and families. ED clinicians are, due to the nature of their work, open to other specialties (Chan, 2006), which means that there are opportunities for collaborative and reciprocal learning. This includes palliative care teams providing information and training to improve symptom management, care of actively dying patients, understanding of ADs, and death and bereavement practices. Reciprocally, ED staff can assist palliative clinicians to understand the culture, processes, and demands of the ED environment.

Clinical interventions that can be provided by palliative social workers in the ED emanate from a comprehensive palliative care assessment of patient, family, and caregiver, including their individual knowledge; awareness and concerns about diagnosis, prognosis, treatment, and side effects; specific religious or cultural values and expectations (Gwyther et al., 2005); and ethical and legal issues. By providing education and support to emergency clinicians and participating in goals of care or AD conversations, the palliative social worker serves as a resource and intervenes to help patients and families as they consider and integrate information and options for care. Palliative social workers can also provide individual and/or family counseling in the ED for specific palliative care concerns such as patient or caregiver distress, conflicts and clarification related to decision making, and need for caregiver support. Symptom management techniques such as relaxation exercises for anxiety, pain, or shortness of breath can be provided easily in the ED setting. Finally, crisis intervention counseling skills are essential to assist patients and caregivers whether in the setting of a new diagnosis, a medical crisis, or an actively dying patient.

Conclusion

Many patients with serious illness, their families, and caregivers present to the ED seeking assistance with symptom distress such as pain or shortness of breath, new or worsening functional impairment, and patient needs and demands that have grown to exceed the resources in place in the community. Because it is in the ED where a decision will be made about treatments and admission, there is a unique opportunity to intervene with patients and families who have life-limiting conditions. Both ED and palliative social work clinicians can play an active and pivotal role in identifying, assessing, and intervening with patients and families who present to EDs with unmet palliative care needs.

Learning exercises

  1. 1. As the palliative social worker who has been called to the ED by the physician to assess for symptom management distress in Mr. L., a 45-year-old Cantonese-speaking male patient with head and neck cancer, you and an interpreter meet with him to assess need and levels of symptom distress. When you ask him if he has been sad at all in the past 2 weeks, he responds, “I think about killing myself all the time.” How do you respond? How would you document a note in the ED chart for other clinicians to view? How might you view the cultural and gender aspects of this distress? What would be your recommendation to the physician?

  2. 2. An ED resident (physician in training) asks for your help in telling the 16-year-old son of a woman with advanced cancer that his mother is actively dying. How would you assist the ED resident? What steps might you take in preparation for this conversation? Do you need the patient's consent to have this conversation? What are you anticipating and preparing for to ensure the most supportive environment for this son? Do you agree to participate? Why or why not? How do you help the resident to think through and prepare for the possible outcomes of this discussion?

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