Mediating Systems of Care: Emergency Calls to Long-Term Care Facilities at Life's End

Abstract

Background:

Nursing home (NH) residents account for over 2.2 million emergency department visits yearly; the majority are cared for and transported by prehospital providers (emergency medical technicians and paramedics).

Objective:

The purpose of this study was to investigate prehospital providers' perceptions of emergency calls at life's end. This article focuses on perceptions of end-of-life calls in long-term care (LTC).

Design:

This pilot study employed a descriptive cross-sectional design. Concepts from the symbolic interaction theory guided the exploration of perceptions and interpretations of emergency calls in LTC facilities.

Setting/Subjects:

A purposeful sample of prehospital providers was developed from one agency in a small northeastern U.S. city.

Measurements:

Semistructured interviews were conducted with 43 prehospital providers to explore their perceptions of factors that trigger emergency end-of-life calls in LTC facilities. Qualitative data analysis involved iterative coding in an inductive process that included open, systematic, focused, and axial coding.

Results:

Interview themes illustrated the contributing factors as follows: care crises; dying-related turmoil; staffing ratios; and organizational protocols. Distress was crosscutting and present in all four themes.

Conclusions:

The findings illuminate how prehospital providers become mediators between NHs and emergency departments by managing tension, conflict, and challenges in patient care between these systems and suggest the importance of further exploration of interactions between LTC staff, prehospital providers, and emergency departments. Enhanced communication between LTC facilities and prehospital providers is important to address potentially inappropriate calls and transport requests and to identify means for collaboration in the care of sick frail residents.

Introduction

Long-Term Care (LTC) includes a broad range of health, personal care, and supportive services for people with complex histories of comorbid chronic illnesses, injury, disability, frailty or advanced age, and limited ability to physiologically compensate for critical illness.¹ LTC was provided to 1,369,700 NH residents and 835,200 people in residential care communities in the United States during 2014; demographic projections suggest steady increases in these numbers until 2050.¹ Curative care for LTC residents is limited to events such as infections, fractures, and myocardial infarctions.² The majority of residents in LTC facilities have limited life expectancy, and nursing homes (NHs) have mortality rates of 28% per year.³ As a result, NH care has been conceptualized as end-of-life care.⁴ NH residents often experience multiple transitions between healthcare environments near the end of life. Transitions can be burdensome for sick, vulnerable, and frail residents and their families to manage and involve distress, inappropriate care, and premature mortality.^5,6

NH residents make over 2.2 million emergency department visits annually in the United States.² NH residents were found to be heavy users of emergency medical services with high rates of ambulance transport, diagnostic testing procedures, higher rates of hospitalization, and mortality.^2,7 Medicare Part B covers preventive care and medically necessary services, including ambulance transportation.⁸ The number of ambulance transports reimbursed by Medicare Part B increased 69% between 2002 and 2011.⁹ The disproportionate use of emergency services by older adults has been found to most often involve acute illness and a need for high-intensity care rather than to be inappropriate overuse. Fall-related injuries, self-care problems, and the high occurrence of repeat emergency department visits suggest a complexity of need beyond immediate medical care.¹⁰ Yet, emergency department providers often perform aggressive lifesaving treatment, including invasive procedures, in an environment that is often chaotic, noisy, and distressing for frail, ill NH residents.⁷ Emergency services have been viewed as lifesaving, but less than ideal for end-of-life care.¹¹

The factors that lead to the transport of NH residents to emergency departments are embedded in a complex web of social, historical, and political factors. Advances in medical and pharmaceutical technology have contributed to postponed death, and difficulty remains in developing consensus about when a palliative approach is appropriate.¹² This confusion is central in NHs where evaluation of physical, psychosocial, and sensory impairments is labor-intensive and specific geriatric conditions may be overlooked in the process.¹³ Historically, individuals have had the right to express their wishes for care at life's end since the enactment of the Patient Self-Determination Act in 1990.¹⁴ Written Physician Orders for Life-Sustaining Treatment (POLST), first introduced in Oregon in 1991 to direct care for older adults with serious illness between settings (e.g., transition from NH to hospital), are now endorsed in 26 states and being developed in 23 others (POLST.org). POLST were designed to eliminate some of the uncertainty of end-of-life decision making, but patients may not have understood treatment options that were presented in conversations with providers and the content may still require interpretation in the clinical setting.¹⁵ Conflicts result when NH residents' written orders are unavailable¹⁶ or the medical condition does not meet the requirements for withholding resuscitation.¹⁷ NH patients are a particularly challenging population because essential information, such as the reason for transfer, advance directives, and baseline and functional status, is often unavailable.¹⁸

Prehospital providers (emergency medical technicians and paramedics) are on the frontline, called by LTC staff to help in a crisis, and made responsible for transitioning the patient to an emergency department where the appropriateness of the transfer is assessed through a different lens. Emergency calls from LTC facilities and the subsequent transport of a resident to an emergency department can create conflict about what constitutes appropriate care. The perspectives of emergency department and NH staff vary based on differential priorities and realities of distinct healthcare environments. Prehospital providers can serve as mediators by defusing conflicts that can emerge from the disconnect between expectations of NH and emergency department providers. The purpose of this study was to explore prehospital providers' perceptions of emergency end-of-life calls. This article focuses on encounters between prehospital providers and LTC staff and presents a focused analysis of prehospital providers' perceptions of factors that contribute to the nature of these calls.

Methods

The study design was descriptive and cross-sectional. Qualitative methods were selected to capture the lived experience from the insider perspectives of prehospital providers and create meaning from it.¹⁹ Concepts from the symbolic interaction theory guided the study. Symbolic interaction posits that social interactions inform the process of meaning making. People perceive verbal and behavioral interactions, interpret, and react to them.^12,20 Upon entering a situation such as an emergency call, providers define, interpret, and determine appropriate behavior. Purposeful sampling included the specific recruitment of paramedics and emergency medical technician-basics during an in-service education day at one agency in a small northeastern U.S. city and they were invited to participate in a voluntary in-person interview before or after a shift. Initially, 70 prehospital providers volunteered to be interviewed; following 3 failed attempts to schedule with 27, interviews were conducted with 43, yielding a 62% participation rate.

Open-ended interview questions were developed by two investigators (D.P.W. and B.C.) to explore prehospital providers' perceptions of emergency calls at the end of life, factors that contribute to conflicts, how decision making occurs in the field, and specific perceptions of 911 calls to LTC facilities in their own words. Analysis of the overall management of end-of-life calls has been previously reported.²¹ The analysis reported here focuses specifically on perceptions of emergency calls in LTC. The University at Buffalo Institutional Review Board approved the study.

Analysis

Interviews were audiorecorded and professionally transcribed with permission, and text documents were entered into Atlas.ti for data management, coding, and narrative analysis. Qualitative data analysis was inductive. The coding process was iterative beginning with open coding or line-by-line data examination to explore the narrative and identify key concepts. Systematic coding involved a start list of codes that aligned the concept in each interview question (e.g., written orders) with units of text.²² Responses were categorized by their key concepts (e.g., conflict). Focused coding was utilized to identify specific perceptions and interpretations of interactions in LTC facilities. Codes were collapsed to develop four themes that illuminated providers' perceptions of emergency calls to LTC facilities. Axial coding, or defining unique and distinct properties, was used to illuminate emergent themes.¹⁹ Interview transcripts were independently coded by two authors (D.P.W. and J.M.M.) and consensus was achieved through code comparison about the meaning of and use of codes and the development of themes. Rigor of the qualitative data analysis was maintained through observer triangulation—integrating three investigator perspectives; interdisciplinary triangulation—medicine and social work; memoing—adding notes with early interpretation in Atlas.ti; and through the use of an audit trail—journal of analytic decisions.

Results

Forty-three prehospital providers were interviewed: 33 (77%) paramedics and 10 (23%) emergency medical technicians. The sample was largely white (98%) and male (78%). Participants ranged in age from 21 to 65 years (mean = 39; standard deviation = 11). The majority had higher education: 21 (49%) had some college education and 19 (44%) had completed a postsecondary degree. The demographics of the study sample are reflective of prehospital providers in the United States.²³ There are 42 NHs in the city that is covered by the participating agency.

Prehospital providers' perspectives on encounters in LTC facilities

Prehospital providers described the dynamics that shape end-of-life calls in LTC environments. Four themes illuminate the nature of providers' perceptions: care crises; dying-related turmoil; staff shortages; and organizational protocols. Each theme is described and illustrated with participants' words. Distress was crosscutting and an element of each theme.

Care crises

Participants (20/47%) described their observations and perceptions of how overwhelming an imminent death can be for LTC staff and how it can lead to the need for prehospital provider support—and possible conflict—in care crises. Participants illustrated the universal expectations that NHs provide care for large numbers of residents who have multiple chronic conditions and are in the very late stages of life. Participants offered their perspectives on both the realities of providing routine NH care for numerous people with multiple needs and the increased challenge when a resident begins changing acutely and death is imminent. This challenge can escalate to a crisis and contribute to high rates of emergency calls. This 21-year-old male paramedic illustrated the current reality of NH care:

I think it has largely to do with the density of sick people in one place. The population is getting older, more and more people are getting sick and with the advances in modern technologies, they are staying alive longer than they used to. Unfortunately, what comes with that is the fact that they're going to be sicker and sick more often beyond what a nursing home can provide.

Participants described their observation that staff in both NHs and assisted living facilities experience dissonance from simultaneously trying to manage routine care and the intensifying needs of a resident who is dying. A 32-year-old male paramedic described perceptions about how these limitations exacerbate calls to emergency medical services:

They're mostly dealing with chronic conditions, then–when it comes to acute emergencies—they panic.

The inherent pressure of balancing acute needs at the end of life with the ongoing needs of other residents can create a crisis to which emergency transport may become a stress response. A 39-year-old male paramedic illustrated the care crisis of rapid deterioration:

I think they struggle when it comes to [Do-Not-Resuscitate orders] DNRs. When a person is deteriorating rapidly they call us to help them even if the person has a DNR. They could be helped by education about end-of-life care.

Prehospital providers have important assessment skills to help LTC staff manage care crises.

Dying-related turmoil

Participants (32/74%) described elements of distress (emerging specifically from observation of the dying process) that seemed to propel LTC staff to call 911 when residents begin declining. Fear, stressors, and death anxiety were described as either intrinsically initiated by staff members' personal reactions to losing a resident or dealing with dying or extrinsically initiated by the perception that the facility would be cited or sanctioned if residents died onsite. A 53-year-old male paramedic described an intrinsic factor:

Some of it is personal panic; not every nurse is cut out to watch somebody die.

Attachment to NH residents is also an intrinsic factor that was illustrated by this 41-year-old male emergency medical technician:

I think they call 911 because they don't want the person to die there. In nursing homes, these patients are yours until they die. They get to know them. Almost like a family member.

Many participants cited the idea that reported deaths within a facility could be seen as reflective of lower quality care at that facility; this could be an extrinsic factor that influences emergency calls, as illustrated by this 36-year-old male paramedic:

I suspect that they don't want the death recorded in their facility. They want it recorded in a hospital.

Participants expressed an understanding of the distress that NH staff experience when a resident is dying. This 29-year-old female paramedic illustrated:

It is tough—they really care. I want to say “It's ok, nobody is going to get mad at you, they're elderly people, they die, its ok.”

Dying-related fear, panic, and anxiety may be powerful motivators for 911 calls when a resident is dying.

Staffing ratios

Participants (29/67%) articulated their observations of high resident-to-staff ratios in LTC and the impact they have when a resident is dying and needs additional time and attention. Participants perceived that providing good care at life's end takes more time than might be available with heavy resident–nurse ratios. Participants described staffing ratios as a major factor that contributes to prehospital calls for support, validation, and clarification. A 25-year-old male emergency medical technician illustrated the realization that NH care is demanding and high resident–nurse ratios diminish care:

I think the staff just doesn't have time. They'll put ten patients with one nurse. It's just too much-then people fall through the cracks and problems happen.

Participants expressed perceptions that insufficient reimbursement for nursing care could lead to staffing decisions, as illustrated by a 39-year-old female emergency medical technician:

Medicaid doesn't pay that much so they have to make staff cuts.

Medical crises at life's end may require additional staff time and, as a result, low staffing levels may lead to emergency calls.

Organizational protocols

Participants (36/84%) described LTC policies and practices requiring prehospital calls when patients begin to decline. Participants described LTC staff responses that cite protocol as in this representative quote from a 40-year-old male paramedic:

Protocol. That's their answer. It's our protocol. This person has a DNR—we can't keep them here. You have to take them.

Participants described the generally accepted understanding that when LTC staff contact the on-call physician and s/he stipulates transport to a hospital, then that becomes a medical order. Prehospital providers are then obligated to transport the person, as illustrated by this 26-year-old male paramedic:

Nurses are the doctor's eyes. If they call and their physician or nurse practitioner wants them to be evaluated, then we have to take them in.

Participants were also aware of the heavy patient–physician ratios that contribute to a provider's decisions about transport. This representative quote from a 43-year-old male paramedic illustrates the sheer volume that many NH physicians balance:

A lot of nursing home doctors who deal with 90, 100, 150 patients in a facility will say, ok just send them to the ED.

Participants described conflict about protocols that require frequent transport of NH residents to emergency departments. Nearly half (46%) articulated the need for interdisciplinary communication between emergency and LTC providers to address these challenges.

Distress

LTC staff distress was crosscutting and central within each theme. Prehospital providers described frequently encountering emotional responses from LTC staff. Care crises are accompanied by distress that emanates from a disconnect between routine and end-of-life care that is caused by a resident's rapid changes and the need for a level of assessment and care that is unable to be provided in LTC. Dying-related turmoil is accompanied by distress that is experienced by LTC staff who are fearful, anxious, or avoidant of the dying process. High resident–staff ratios are accompanied by distress and frustration from the perceived need for more staff to assist with care. Organizational protocols that create expectations of automatic transfer generate stress from conflict between the expectations and needs for care of a dying resident and the expectations of emergency and prehospital care as lifesaving, not end-of-life, care. This paramedic provides a representative illustration of the complexity of the distress:

I understand both sides of it. The staff can notice trouble breathing, weren't prepared for a decline, and don't want her to suffer so better send her out. We get there and they're in bad shape but for some [residents] the transport is brutal.

Discussion

Prehospital teams are frequently called to LTC facilities when residents are in a medical crisis near the end of life. Interviews with 43 prehospital providers demonstrated the complexity of these encounters and underlying dynamics that influence the outcomes of these calls. The co-occurring need to manage residents with multiple chronic conditions together with dying residents' intensifying needs at the end of life exacerbates crises. High resident-to-staff ratios and organizational protocols that dictate the transport of a declining resident to the emergency department can predispose staff to conflict. Prehospital teams become intermediaries between the transport expectations of NH staff and the needs of frail sick residents in the high-acuity emergency department environment.

The study findings build on and extend previous studies that challenge the belief that LTC residents are at times dumped on emergency departments. Jensen et al. found that most NH transfers appeared appropriate given the diagnosis, comorbidities, and acuity.²⁴ Many LTC researchers, advocates, and health economists have concluded that NHs operate with suboptimal staffing and advocate for appropriate staffing levels to be determined.^25,26 Beyond ratios, the study findings illustrate that staffing is complicated by the additional burden imposed by important, but time-consuming, care at the end of life. Moreover, staff–physician relationships and hierarchical decision making portend the inevitability of hospitalization before death. NH death is only considered a reportable incident if it occurs by suicide or by unexplained or suspicious causes.²⁷ Modifiable elements of NH care that are linked to symptom burden have been identified as potential strategies for managing end-of-life care.²⁸

The study had limitations. Data were collected from only one prehospital company and this limited range introduced bias. The defining features of NHs, residential care communities, and assisted living facilities have become less clear. It is possible that participants' experiences in LTC facilities are not differentiated by type of setting. The voices and perspectives of LTC staff were not included, but are central to further understanding of the complex nature of these emergency calls. Understanding the perceptions of both prehospital providers and LTC staff is important for improving their frequent interactions. Finally, due to recall bias, providers may have more clearly remembered more intense or stressful encounters than the more ordinary experiences that occur regularly.

The study has important implications for practice. Enhanced communication between LTC facilities and prehospital providers is critically important to address potentially inappropriate calls and transport requests, as well as to identify means for collaboration in the care of sick frail residents. Education about advance care planning and decision making is a fundamental element in the roles that LTC and prehospital providers play at the end of life. Distress accompanies emergency calls in LTC and suggests the possible need for additional education and training about end-of-life care. Growing numbers of frail residents suggest the need to consider staffing ratios, changes to policy, and public perceptions of quality at life's end. A resident's end-of-life experiences are significantly influenced by the care that is provided by LTC facilities, emergency departments, and prehospital providers who mediate these systems.

Footnotes

Acknowledgments

The authors are grateful for the support of the Baldy Center for Law and Social Policy, the Buffalo Center for Social Research, and to 43 frontline prehospital providers who were willing to share their perspectives.

Author Disclosure Statement

No competing financial interests exist.

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