Challenges Faced by Prehospital Emergency Physicians Providing Emergency Care to Patients with Advanced Incurable Diseases

Introduction The aim of our study was to investigate challenges faced by emergency physicians (EPs) who provide prehospital emergency care to patients with advanced incurable diseases and family caregivers in their familiar home environment. Methods Qualitative study using semistructured interviews with open-ended questions to collect data from 24 EPs. Data were analyzed using qualitative content analysis. Results We identified nine categories of challenges: structural conditions of prehospital emergency care, medical documentation and orders, finding optimal patient-centered therapy, uncertainty about legal consequences, challenges at the individual (EP) level, challenges at the emergency team level, family caregiver's emotions, coping and understanding of patient's illness, patient's wishes, coping and understanding of patient's illness, and social, cultural, and religious background of patients and families. EPs strengthened that the integrations of specialized prehospital palliative care services improved emergency care by providing resources to patients and family caregivers, enhancing the quality and availability of medical documentation and accessibility of aftercare in emergencies. Areas of improvement that were identified were to promote emergency physicians' knowledge and skills in palliative care, communication, and family caregiver support by education and training. Furthermore, structures for better care on-site, thorough medical documentation, and specialized palliative care emergency facilities in hospital and prehospital care were requested. Conclusion Prehospital emergency care in patients with advanced incurable diseases in their familiar home environment may be improved by training EPs in palliative care, communication, and caregiver support competences. Results underline the importance of collaborative specialized palliative care and prehospital emergency care.


Introduction
Palliative care intends to improve the quality of life of patients suffering from advanced incurable, life-limiting diseases and by enabling them to live a dignified life until patients' death in the desired environment. At end of life, the majority of patients prefer to receive care and die in their familiar home environment-in Germany, this applies to approximately two-thirds of all patients with advanced cancer [1]. Patients with advanced incurable diseases and family caregivers can face diverse sudden and sometimes acute life-threatening problems in their familiar home environment, such as dyspnea, convulsive attacks, pain exacerbation, or severe anxiety, which may lead to emergency calls and subsequent hospital admissions [2].
Previous studies have shown that the number of prehospital emergency care visits ranges from 2-10% in patients with advanced incurable diseases in their familiar home environment [3][4][5][6]. erefore, every prehospital provider can be confronted with patients at an advanced stage of disease who need emergency medical care [6]. e majority of prehospital emergency calls and emergency department visits of patients with advanced incurable diseases are caused by shortness of breath, pain, neurological disorders, family caregiver exhaustion [7][8][9], by disease-related anxiety, or feelings of safety and familiarity with the hospital setting [9,10] and are dependent upon local community-based healthcare structures and population areas [11]. Additionally, studies showed that some emergency department visits might be avoidable and are related to some such as pain medication refills or constipation [12]. e use of emergency medicine kits in home hospice patients seems to be helpful and might provide a timely symptom relief and may diminish the need for prehospital emergency care [13,14]. Nevertheless, there are still unavoidable emergency department visits related to infections or neurologic events.
To improve home care of patients with advanced incurable diseases and with complex symptom burden, specialized prehospital palliative care services were established in Germany in 2007 [15].
ese services are at least biprofessional, include general practitioners or family physicians with specific board qualification in palliative care and nurses, and are 24 hours available. In addition to medical and patient care in the home environment, their responsibilities include the coordination of care and the provision of psychosocial support to both patients and family caregivers [15,16]. Prior studies indicated that the involvement of palliative care can reduce prehospital emergency care in patients with advanced incurable diseases in their familiar home environment [7,9,12,[16][17][18][19][20] and avoid hospital admissions [7,12,18]. A German study showed that in approximately 97% of patients cared for by specialized prehospital palliative care services, no prehospital emergency care was necessary and hospital admissions were avoided in 80% of the cases [16]. Nevertheless, these services are not available nationwide and optimal patient care remains insufficient [21].
From the point of view of specialized prehospital palliative care services, several difficulties in emergency care for patients with advanced incurable diseases in their familiar home environment have been identified: inadequate end-oflife discussions, missing documentation on treatment goals in emergency situations, e.g., "do not resuscitate orders," or explicit wishes of patients or family caregivers not to be admitted to the hospital [22].
In addition to these findings, several problems in the treatment of patients with advanced incurable diseases in the emergency department (ED) have been identified [23][24][25][26][27]: working conditions such as fast-paced work environment, quickly needed treatment decisions, challenges associated with cultural differences, as well as a lack of patient-physician relationship. Inadequate skills in the treatment and communication of palliative care patients can entail challenges for emergency physicians (EPs) in the emergency department [28]. Even though knowledge about palliative care is considered to be an important competency in inpatient emergency care [28,29], the understanding and knowledge regarding palliative care is often limited in emergency department EPs [30,31]. Structured training of EPs working in the ED in palliative care improves their medical skills in palliative care, which can enhance patient care in emergency departments [28]. Challenging aspects of emergency care for patients with advanced incurable diseases in the emergency department might also occur in prehospital emergency care, and specific requirements of prehospital emergency care are likely to influence both the extent and quality of challenges faced by prehospital emergency physicians (EPs). erefore, our study aimed to explore challenges prehospital EPs face during prehospital emergency care for patients with advanced incurable diseases in their familiar home environment.
is included an evaluation of prehospital emergency physicians' understanding of palliative care, challenges experienced during prehospital emergency care for patients with advanced incurable diseases in their familiar home environment, and suggestions of potential improvements.

Study
Design. An explorative qualitative design using semistructured interviews was used. e study focused on challenges prehospital EPs experience when providing patients with advanced incurable diseases and family caregivers with prehospital emergency care in their familiar home environment. End-of-life care was included as a specific part of palliative care. Since general prehospital palliative care was not defined by specific care structures in Germany at that time, the term "patients with advanced incurable disease in their familiar home environment" was left partly undefined intentionally to include challenges caused by missing definitions and structures in this context. is study was conducted at a department of anesthesia at a university medical center in Hamburg, Germany. At the time of the study, there were 32 emergency physicians in the anesthesiology department which provided prehospital emergency care at a fire and rescue station in Hamburg. All participants had at least 6 months of professional experience in prehospital emergency care. Given emergency physicians' written informed consent, the interviewer (HR), who had no clinical or personal relationship with the participants, conducted semistructured face-to-face interviews, which were audiotaped, transcribed verbatim, and anonymized. Basic data on sociodemographic characteristics and emergency physicians' professional experience were also inquired. e study has been approved by the local ethics committee of Hamburg, Germany (PV5217).

Data Collection.
Interviews were conducted in the premises of the University Medical Center Hamburg-Eppendorf between November 2016 and March 2017. A structuring interview guide with open-ended questions was used, which had been developed by an interdisciplinary research group. e guide began with questions regarding basic understanding of palliative care, with a focus on challenging factors of prehospital emergency care in patients with advanced incurable diseases in their familiar home environment. EPs were encouraged to recall about experiences they made with and without the involvement of specialized prehospital palliative care services. Written prompts with the following keywords were used to help the EPs to structure their thoughts regarding potential challenges: "structures," "processes," "outcomes," "team-based," "individual," and "social." Interviews were closed with questions regarding the improvement of prehospital emergency care in patients with advanced incurable diseases in their familiar home environment.

Data Analyses.
e interviews were analyzed using qualitative content analysis with an inductive approach according to Mayring [32,33]. e first five interviews were independently analyzed by AK and HR (medical researchers), who first assigned suitable codes to relevant text passages of the interview transcripts. To check generated codes, coded interview transcripts were discussed in several meetings within the research team including researchers with expertise in qualitative research. In the course of this process, all codes were open to adaptation. After development of the final coding scheme, all interviews were analyzed by AK and HR using the data analysis program MAXQDA. Differences between encoders were resolved by verbal discussions.
We used the Consolidated Criteria for Reporting Qualitative Studies (COREQ) framework to report on the design, conduct analysis, and findings of our study [34].

Characteristics of the EPs. We interviewed 24 out of 32
EPs with the number of interviews and sampling basing on the principles of maximum variation regarding gender and experience in prehospital emergency care. Ten EPs were female and 14 male with a mean professional experience in anaesthesiology of 8.1 years (range, 4.5-14). Six participants had professional experience in emergency medicine of less than 3 years, 12 of 4-6 years, and six of 7 years or more. One EP had obtained specific board qualification in palliative care. e interviews lasted 48 minutes (range, 29-70) on average.

Understanding of Palliative
Care. When describing their conception of palliative care, all EPs unanimously pointed to the care of terminally ill or dying patients, alleviation of suffering, medical symptom control, and improvement of quality of life. Knowledge about palliative care varied widely. EPs unanimously reported that prehospital emergency care patients with advanced incurable diseases in their familiar home environment mostly occurred in cases of insufficient symptom control with exacerbation of pain or dyspnea being mentioned most frequently. Secondly, high family caregiver burden in terms of anxiety, poor preparedness to respond to emergency situations, or general helplessness were identified to provoke emergency calls.

Challenges in Prehospital Emergency
Care. Interviews revealed nine categories of challenges that EPs faced when providing prehospital emergency care to patients with advanced incurable diseases in their familiar home environment.
(1) Structural conditions of prehospital emergency care (2) Medical documentation and orders (3) Finding optimal and patient-centered therapy (4) Uncertainty about legal consequences (5) Challenges at the individual (EP) level (6) Challenges at the emergency team level (7) Family caregiver's emotions, coping, and understanding of patient's illness (8) Patient's wishes, coping, and understanding of patient's illness (9) Social, cultural, and religious background of patients and families Main categories, subcategories with definitions, and exemplary quotes are listed in Table 1.

Structural Conditions of Prehospital Emergency Care.
EPs unanimously reported that prehospital emergency care is subjected to time limits, which may contribute to subsequent hospitalization of the patient. EPs often could not dedicate the time needed for end-of-life discussions including prognosis and therapy goals. Furthermore, EPs described inadequate medical equipment, e.g., specific medicine for palliative-not emergency-care, to cause problems.

Medical Documentation and Orders.
In all interviews, EPs described that contradictory and missing documents about the patient's illness, past medical treatment, and emergency orders cause problems, particularly in high emergencies. In many cases, no advanced directives had been prepared but were considered highly important if the patient was no longer capable of expressing his or her own will. In addition to missing documentation, ambiguous or contradictory wording was described as challenging for treatment decisions.

Finding Optimal and Patient-Centered
erapy. EPs considered it demanding to find optimal and patientcentered therapy in the prehospital emergencies due to restricted equipment and a large variety of patients' wishes regarding therapy.
is was particularly relevant in the presence of insufficient medical documentation and orders. Lacking knowledge of treatment schemes and options in palliative care was perceived to complicate decision-making.

Uncertainty about Legal Consequences.
Most EPs reported to fear potential legal consequences of treatment, in particular when administering high-dose opioids. Prehospital emergency care was claimed to often result in hospitalization of patients because EPs were uncertain about legal issues and how to assure patient safety at home without having the possibility to observe treatment outcomes.

Advanced directives
Advances directives' importance if the patient is no longer capable of expressing an own will "It's difficult for me when I only have the assumed will I'm told by relatives [. . .] and nothing written. I'm then leaving an end-of-life patient that's most likely to die [. . .] but personally, I've got nothing but the assumed will from people, mostly even without a healthcare proxy" (19, 52) Category 3 Finding optimal and patient-centered therapy Restricted resources and a large variety of patient wishes regarding therapy and their impact on medical emergency decision-making " ose situations present a conflict on how much to do, how much I can do and still let the patient remain at home" (6, 2) Category 4 Uncertainty about legal consequences Decision-making regarding treatment/stay at home and the impact of possible legal consequences "[. Challenges at the individual (EP) level

Personal needs and emotions
Personal needs and emotions expressed by the interviewed EPs when facing patients with advanced incurable diseases "If I leave patients at home I need to know that all people are informed about things to come, can cope with the situation and that suffering is bearable" (2, 2)

Experiences with palliative care situations
Personal and work experience with patients with advanced incurable disease and treatment "But to deal with this hopeless situation, it is hard to accept that this is not a personal failure and it is hard to accept that I cannot longer help this patient [. . .]"

Challenges at the Individual (EP) Level.
Even experienced EPs described an impact on personal needs, emotional reactions to the situation faced (e.g., sadness), and prior family or work experiences with palliative care situations. Showing empathy to patients and family caregivers was considered highly important among EPs, but some pointed out that empathetic behavior often has to stand back in general prehospital emergency care, and thus can challenge EPs when required. Lack of professional experience and knowledge in palliative care was mentioned to lead to challenges, especially for younger EPs.

Challenges at the Emergency Team Level.
EPs reported that challenges could arise from diverging perceptions and reactions regarding the care for a terminally ill or imminently dying patient within the emergency team (physicians and paramedics). Decision-making and treatment plans are structured by hierarchies but might be less effective when team members disagree. Additionally, lacking empathy of colleagues was reported to have led to team conflicts in several cases.

Family Caregiver's Emotions, Coping, and
Understanding of Patient's Illness. Almost all EPs described burden of family caregivers (e.g., anxiety and exhaustion), limited understanding of patient's illness, avoiding coping strategies, and strong emotional involvement as challenging factors in prehospital emergency care. EPs underlined that communicating with affected family caregivers requires time and specific skills, which are both limited in prehospital emergency care.

Patient's Wishes, Coping, and Understanding of Patient's Illness.
EPs mentioned patients' limited understanding of illness, anxiety, and avoiding coping strategies, which often result in difficult treatment and end-of-life care discussions, to be challenging. Furthermore, consideration of patients' wishes regarding emergency care is often difficult in prehospital emergency care due to a deteriorated clinical status (e.g., unconsciousness and weakness) or conflicting caregiver needs.

Social, Cultural, and Religious Background of Patients and Families.
Cultural norms or religious beliefs regarding life and death as well as expectations towards the treatment of terminally ill or dying patients were mentioned to challenge EPs. Limited health literacy of patients or families was perceived as a general problem in prehospital emergency care, which even aggravated in patients with advanced incurable diseases.

Perceived Impact of Specialized Prehospital Palliative
Care Services. All interviewed EPs agreed that emergency care in patients with advanced incurable diseases in their familiar home environment substantially improves if a specialized prehospital palliative care service is involved as follows:

Patients' and Family Caregivers' Preparedness.
EPs felt that patients and family caregivers had often gained a deeper understanding of the patient's clinical status, were better prepared for emergencies, and overall caregiver burden seemed reduced, which promoted patient-centered treatment decisions.

Leaving Patients Safely at
Home. e availability of aftercare in terms of rapid response by specialized prehospital palliative care services was experienced to prevent subsequent hospital admissions, as specialized prehospital palliative care services could monitor treatment outcomes and EPs knew patients to be cared in a safe environment.

Quality of Medical Documentation.
EPs reported documentation about patients' medical/treatment history and emergency orders was valuable and easily available, which contributed to a rapid and adequate response to the emergencies. Advanced directives were prepared more often when specialized prehospital palliative care services were involved and EPs felt relieved that they knew the patients' wishes in the run-up to treatment decisions.

Improvement Suggestions.
EPs proposed improvements of prehospital emergency care for patients with advanced incurable diseases in their familiar home environment ( Table 2).

Education and Training in Palliative
Care. Lacking knowledge and skills in palliative care was stressed to complicate prehospital emergency care in patients with advanced incurable diseases in their familiar home environment. Integrated structured training in EPs education and specific workshops or practical training (e.g., attending a specialized palliative care unit) could enhance optimal care from EPs point of view. Additionally, EPs described a need for transparent information about existing in hospital and prehospital palliative care structures, as well as their indication and utilization.

Structural Modifications.
EPs suggested standardized emergency orders including information about illness, past medical treatment, and drug therapy. Furthermore, they proposed the establishment of a "rapid response team" for patients with advanced incurable disease who were not receiving palliative care by a specialized prehospital palliative care service and a regional advisory hotline (specialized prehospital palliative care service) for EPs. To avoid stressful transition via hospital emergency wards, EPs thought of direct admissions to specialized palliative care facilities in hospitals.

Discussion
is qualitative study describes various challenges EPs face when providing prehospital emergency care to patients with advanced incurable diseases in their familiar home environment. Structural conditions, barriers for optimal patient-centered care, lacking medical orders, legal uncertainties, lack of palliative care knowledge, and personal experiences were described to cause demanding situations. Additionally, patients' and particularly family caregivers' avoiding coping strategies and limited understanding of patient's illness, and exhaustion were identified as potential complicating factors.
EPs pointed out various challenges similar to those experienced by providers in hospitals' emergency departments, e.g., differing cultural norms, spiritual beliefs, and limited health literacy [23][24][25][26][27]. Furthermore, emergency department physicians have described that many patients were not aware of their clinical status, often due to lack of primary care, unreasonable expectations, or limited health literacy [23], which was similar to the statements of the EPs in our study.
ey also reported an oftentimes limited understanding of patient's illness, which could be enhanced by the involvement of specialized prehospital palliative care services. Challenges associated with working conditions, such as fast-paced work environment, the need for rapid treatment decisions, as well as a lack of patientphysician relationship seen in in hospital emergency care [23][24][25][26][27], were also repeatedly mentioned by EPs in our study. Other studies had observed significantly longer mean durations of emergency care visits in patients with advanced incurable diseases in their familiar home environment, which might result from emergency physicians' doubts to leave the patients in an insecure situation at home [35]. In our study, EPs indicated fear of legal consequences. Furthermore, our study revealed that lacking medical equipment, e.g., specific medication for palliative-not emergency-care, also causes challenging situations. In literature, some studies focussing on the use of emergency medicine kits in home hospice patients are indicating that these medications kits could be helpful to provide timely symptom relief and may diminish the need for prehospital emergency care [13,14]. ese findings add some new aspects to improve prehospital emergency care in patients with advanced incurable diseases in their familiar home environment.
In our study, EPs emphasized their feeling that prehospital emergency care is relevantly improved if specialized prehospital palliative care services are involved in the care of patients with advanced incurable diseases in their familiar home environment, e.g., to leave patients in safe follow-up care at home. Our findings indicate the value of specialized prehospital palliative care services for quality prehospital emergency care in patients with advanced incurable diseases in their familiar home environment, which is underlined by studies reporting that involvement of such specialized services can reduce prehospital emergency care and avoid hospital admission [7,9,12,[16][17][18][19][20]. Studies focussing on the perspective of specialized prehospital palliative care services have pointed out that cooperation between prehospital emergency care and prehospital palliative care should be strengthened and requires joint future approaches for collaboration [22,36].
is was also observed within the emergency physicians' perspective in our study, which should motivate politicians and healthcare systems to facilitate structural modifications. Moreover, literature emphasizes that integration of general practitioners and family physicians can decrease the number of hospitalization by the increase of continuous care and may strengthen a continuous care in the home environment [37].
Emergency physicians pointed out that challenges could arise from diverging perceptions and reactions regarding the care for a terminally ill or imminently dying patient within the emergency team (physicians and paramedics). Decision-making and treatment plans are structured by hierarchies but might be less effective when team members disagree. Additionally, lacking empathy of colleagues was reported to have led to team conflicts in several cases. A study could show that adverse events can be attributed to a lack of teamwork. Effective teamwork may improve the quality of care [38]. Our findings emphasize the importance of team training concepts with focus on communication, coordination, and leadership that support effective teamwork.
Prior studies showed that EPs had a significantly lower knowledge about pain therapy in cancer patients than palliative care physicians [39]. Furthermore, education on decisions in end-of-life therapy and legal consequences of patients' wishes were considered relevant for EPs [27,40]. Lacking knowledge about palliative care as well as limited professional experience in prehospital emergency care for patients with advanced incurable diseases in their familiar environment care was reported throughout our study. e need for structurally integrated education and training of palliative care for EPs became evident. Previous studies have shown that structured training in palliative care, e.g., with case-based simulation interventions, can improve emergency physicians' medical skills and enhance inpatient emergency care [27,41]. It has even been suggested that hospice and palliative care might be a new "subspecialty of emergency medicine" [41]. Some first examples for recommendations for palliative care in emergency care have already been published [6,42,43]; however, they are currently not included sufficiently in standard recommendations for daily clinical practice.
Limitations of our study include the explorative character and the selectivity of the study cohort. e study cohort comprised only EPs of one single fire and rescue station. However, this station covers different population areas representing the entire social and cultural range of a large urban city. All interviews were performed on a purely voluntary basis. erefore, we could not exclude social desirability as well as an experiential response. e semistructured approach secured the relevant content and left enough time for the interviewed EPs to give a broad range of opinions of prehospital emergency care for patients with advanced incurable diseases in their familiar environment.

Conclusion
In conclusion, our study indicates many challenges faced by prehospital EPs providing emergency care to patients with advanced incurable diseases and family caregivers in their home environment. From the emergency physicians' perspective, the integration of specialized prehospital palliative care services seems to improve handling of such emergencies and helps to avoid subsequent unwanted emergency department admissions. Improved structures for integration of palliative care in prehospital emergency medicine and connecting specialized palliative care and emergency care are needed. Knowledge about palliative care, communication, and family caregiver support should be part of emergency physicians' education and training.

Abbreviations
COREQ: Consolidated criteria for reporting qualitative studies EP: Emergency physician.
Data Availability e authors have full control over the primary data. e data analyzed in this study are housed at the Palliative Care Unit, Department of Oncology, Hematology and BMT, University Medical Center Hamburg-Eppendorf, Martinistrasse 52, 20246 Hamburg, Germany. According to the ethical committee approval, this dataset is subject to ethical restrictions and local data protection regulations regarding qualitative raw data, since participant privacy could be compromised. Participants did not consent to have their full transcripts made available for third parties. All relevant data for the conclusions are presented in the manuscript.

Conflicts of Interest
e authors declare that they have no conflicts of interest.

Authors' Contributions
Anne Kamphausen and Hanna Roese contributed equally to this study and are co-first authors.