A Time for Trauma End-of-Life Optimum Support

CLINICAL CARE A Time for Trauma End-of-Life Optimum Support The TELOS Best-Practice Model Karyl J. Burns, PhD, RN Barbara B. Jacobs, MPH, PhD, RN, CHPN Lenworth M. Jacobs, MD, MPH, FACS ABSTRACT The development of the trauma end-of-life optimum support best-practice model was a result of a national call for improved end-of-life care for trauma victims and their families. The model describes best practices for end-of-life care in the prehospital setting, the emergency department, and the intensive care unit. The focus of the best practices is in 6 clinical domains. These include decision making, communication, physical care, psychological care, spiritual care, and culturally sensitive social care. The model has a foundation in the areas of engagement, ethics, education, evaluation, and economics. Key Words Best practice, End-of-life, TELOS END-OF-LIFE CARE IN TRAUMA Trauma accounted for one-half of the 160,882 deaths of individuals between the ages of 15 and 44 years in the United States in 2006. 1 It is the leading cause of death in children and young adults. 1 This highlights the need to provide victims and their families with optimal end-of-life care. The American Trauma Society has supported efforts to ease the burden on patients, families, and the health care professionals who care for them. Two Trauma Leadership Forums were convened by the American Trauma Society to clarify issues related to appropriate and sensitive decision making at the end-of-life of trauma victims and to offer recommendations for their resolution. 2 To implement the recommendations, a best-practice model was needed. A proposal was submitted to the Aetna Foundation s Quality of Care Grants Program; funding Author Affiliations: Department of Traumatology and Emergency Medicine, Hartford Hospital, Hartford, Connecticut (Dr Burns); Hartford Hospital, Hartford, Connecticut, and University of Connecticut, Storrs (Dr B.B. Jacobs); and Department of Traumatology and Emergency Medicine, University of Connecticut School of Medicine, Farmington, and Hartford Hospital, Hartford, Connecticut (Dr L.M. Jacobs). Correspondence: Karyl J. Burns, PhD, RN, Trauma Program, Hartford Hospital, 80 Seymour St, Hartford, CT 06102 (kbburns@harthosp.org). DOI: 10.1097/JTN.0b013e31821f182e was received for 3 years. The best-practice model was developed by the authors using 3 sources of information. These were the discussions of 2 trauma leadership forums, a literature review, and surveys of the general public and trauma professionals. The best-practice model was completed in 2009. THE TELOS BEST-PRACTICE MODEL The best-practice model is referred to as TELOS. TELOS is an acronym for trauma end-of-life optimum support. 3 However, TELOS as used in the best-practice model is more than an acronym. It signifies the philosophical grounding of the model. Telos is a Greek term for the end or purpose of a phenomenon. Aristotle believed that the end, the telos, of life is to lead a good life to achieve well-being and human flourishing. 4 The developers of the model valued a philosophical stance that champions human flourishing. Therefore, TELOS was also chosen because it grounds the project in a framework whose purpose is to promote a good life or human flourishing, even at times of dying and death. The TELOS, or purpose of the TELOS project, is optimum support of dying patients and their families. 3 This article will present the process that was used to implement the plan to develop the TELOS best-practice model. Although the entire model cannot be presented here, some of the salient practices will be discussed. Recognizing differences in laws and practices across the United States, TELOS offers the caveat that laws, regulations, policies, guidelines, or procedures of another state or institution must be followed. 5 It is hoped that the TELOS project will encourage discussion to help bring resolution to issues in end-of-life care. INFORMING AND CREATING THE MODEL Recommendations from the 2 trauma leadership forums provided the initial information to begin the process of model development. 2 A literature review also contributed to the model s knowledge base. In addition, it was deemed necessary to understand and appreciate the opinions, beliefs, and values of the public as well as health care professionals regarding end-of-life care in the trauma setting. The Center for Survey Research and Analysis at the University of Connecticut was recruited to JOURNAL OF TRAUMA NURSING WWW.JOURNALOFTRAUMANURSING.COM 97

conduct a representative telephone survey of 1000 adults in the United States. The same survey was converted into a written questionnaire and sent to trauma professionals including physicians, nurses, and paramedics throughout the United States. Results of the survey have been published in Archives of Surgery. 6 Development of the survey questions was a thoughtful process that sought to achieve certain objectives. These were to ask questions regarding issues of care in the prehospital environment, the emergency department (ED), and the intensive care unit (ICU). Specifically, end-of-life situations and health care practices or the lack of consistent practices that are right and good were examined to generate the survey questions. Right and good are words frequently used by ethicists and others to denote scientific soundness and moral justification, respectively. Responses of the public and professional surveys were compared statistically by the Center for Survey Research and Analysis. 6 Responses of both groups and the differences between the groups were examined by the authors to (1) relate the findings to the recommendations of the trauma leadership forums and the literature regarding end-of-life care for trauma victims and (2) appreciate the meaning of the responses so as to understand their implications for a best-practice model. The next step in creating the model was to decide upon the values and principles that would guide its development and ensure its scientific soundness and moral justification as well as its stability and sustainability. The values and principles were identified as being related to 5 processes that serve as the foundation or pillars of the best-practice model. These are engagement, ethics, education, economics, and evaluation. Engagement refers to relationships and, in particular, to the mutual indebtedness between patients and health care professionals. 7 In the TELOS best-practice model, the engagement practices promote relationships that are authentic and patient-centered. Engagement also includes relationships with society as a whole. The TELOS model directs that health care professionals should participate in societal dialogue to help clarify and resolve end-of-life issues in the setting of trauma. 5 Ethics refers to recognizing and responding to moral challenges in a way that is in the best interest of the patient. 8 Education refers to the education of health care professionals so that they can implement the best practices. Continuing education will be required because the best-practice model is refined and adapted to meet new challenges. 5 Economics pertains to financial and administrative support that will be necessary to ensure the implementation of TELOS. 5 Evaluation directs ongoing assessments of the best-practice model to ensure its refinement and revision using current evidence to continually maximize patient outcomes. 5 Examples of best practices for each pillar are presented in Table 1. 5 TABLE 1 Pillar Engagement Ethics Education Economics Evaluation Examples of Best Practices Related to Each of the TELOS Pillars Best Practice Avoid labeling a family as difficult. Such labeling jeopardizes the fiduciary relationship between patients and health care team members Treat all patients equally on a timely basis. Avoid preferential care based on social or political status Incorporate palliative care practice into education programs as a core competency Fund TELOS and demonstrate the value of quality end-of-life care Construct an evaluation plan that tests the best-practice model over selected time frames. Revise and update model based on evaluative outcomes Abbreviation: TELOS, trauma end-of-life optimum support. The next step was to develop a framework for the delivery of the information in TELOS. It was decided that the model would include general best practices related to the pillars serving as the foundation of the model. Although the general practices can be implemented in any setting, there are additional practices that are specific to each care environment. The environments are the prehospital setting, the ED, and the ICU. Health care professionals will want to implement the general practices related to the 5 pillars and the specific practices related to the care environment in which they work. The conceptual model of TELOS is presented in Figure 1. Prehospital Best Practices Trauma end-of-life optimum support best practices for the prehospital environment include directives for actions at the scene that will assist family members of a severely injured or a dying or dead patient. Additional best practices address the notification of family of a person dead on scene. Other practices are related to withholding and/or withdrawing of resuscitation. Trauma end-of-life optimum support recommends that the Guidelines for Withholding or Termination of Resuscitation in Pre-hospital Cardiopulmonary Arrest developed by the National Association of EMS Physicians Standards and Clinical Practice Committee and the American College of Surgeons Committee on Trauma be followed. 9,10 ED Best Practices More than 30 obstacles to providing quality end-of-life care in EDs have been identified. 11 Four situations rated highest by ED nurses as obstacles to quality end-of-life care are as follows: (1) being too busy, (2) needing to deal with family 98 WWW.JOURNALOFTRAUMANURSING.COM Volume 18 Number 2 April June 2011

Figure 1. TELOS conceptual model. members who are angry, (3) not having appropriate areas for privacy, and (4) the patient s family not understanding what life-saving measures involve. 11 Trauma end-of-life optimum support aims to introduce practices that can be implemented to overcome these obstacles and ease the burdens of family and caregivers alike. Specific TELOS best practices for the ED include appropriate communications to family members that a loved one has been seriously injured and is in the ED, support of family presence in the resuscitation room, decision making, and practices regarding dying and death. 5 Highlights of these practices follow. Communication of serious injury to a patient s family must be done by a person specifically educated and highly skilled at providing such information. 5 News of a traumatic event should not be conveyed on voice mail or an answering machine. Instead a message should be left to have the family member return the call to the ED. When notifying the family, the caller should determine whether the person receiving the call is driving. If so, he or she should be instructed to drive to a safe area and stop the car. Families should not be informed of the death of a loved one over the telephone. Instead, they should be told to come to the ED so a relationship can be established and support services assembled. An exception would be if family members live out of state or are traveling a considerable distance. 5 Family presence in the resuscitation room has been controversial with families generally wanting to be present and trauma surgeons not wanting them in attendance. If physicians do object to family presence, reasons for their objection should be explored and policies and procedures decided in advance to reconcile the issues. 5 Trauma end-of-life optimum support recommends that family presence be considered as an option on a case-bycase basis and especially if the victim is a child. Guidelines from the National Consensus Conference on family presence during pediatric cardiopulmonary resuscitation (CPR) have been developed with representation of professional organizations including the American College of Surgeons. 12 Trauma end-of-life optimum support supports these guidelines. Decision-making best practices in the ED focus on determining the capacity of the patient to make personal health care decisions. 5 If the patient is not capable, a valid surrogate must be assigned who provides evidence of knowledge of the patient s values and preferences and is free of conflicts of interest. Health care professionals have a moral and legal obligation to respect advance directives of a patient as they pertain to the injury event. 5 Families should be offered emotional and psychological support to assist them through this difficult time and to assuage any feelings of guilt that they may experience later on. Trauma end-of-life optimum support practices regarding dying and death in the ED focus on assessing the spiritual needs and beliefs of the patient and family. 5 Cultural values, beliefs, and rituals need to be respected. A private and respectable room for an expired patient is necessary so the family members can view the body and begin their bereavement. Resources to assist them in their continued bereavement should be provided. 5 ICU BEST PRACTICES Two concepts that are fundamental to optimal intensive care are the appropriate use of the ICU setting and JOURNAL OF TRAUMA NURSING WWW.JOURNALOFTRAUMANURSING.COM 99

the appropriate functioning of an interprofessional team (IPT). Trauma end-of-life optimum support directs that ICU admission and discharge criteria should not depend upon b ed availability. 5 Rather, admission and discharge from the ICU must be based on the appropriateness of intensive care to meet the medical needs of the patient. 5 The IPT members should include nurses, doctors, social workers, pastoral care representatives, and others who are involved in the patient s care. The unique feature of an IPT, versus a multidisciplinary team, is the reliance of the members on a shared conceptual framework that respects the individual disciplines, while recognizing the need for a team approach to achieve goals. Trauma endof-life optimum support uses the term IPT to emphasize the respect that members of the IPT have for each other. On the basis of the concepts of appropriate use of the ICU setting and a well-functioning ITP, end-of-life care in the ICU can promote human flourishing of dying trauma patients. The TELOS best practices for end-of-life care in the ICU focus on communication, decision making, dying and death, and withdrawal of life-sustaining care. The best practices for communication require that dire information be conveyed to families compassionately and succinctly using words that clearly indicate the nature of the situation. 5 Using the VALUE mnemonic to guide discussion during family meetings coupled with giving the family a brochure on bereavement has been shown to significantly lower posttraumatic stress, anxiety, and depression. 13 With this method, V represents valuing and appreciating what family members are saying, A denotes acknowledging the emotions of the family, L represents listening, U signifies understanding the patient as a person, and E denotes eliciting questions from the family. It is imperative that a mechanism to accurately and consistently inform the family of the patient s situation is in place; different messages from different services must be avoided. 5 Goals should be documented on a standardized form that includes the patient s advance directives, resuscitation status, contact information for the designated surrogate, and information about what, when, and by whom the surrogate was informed. Decision-making best practices in the ICU are more detailed than the other environments because the decisions for dying ICU patients frequently require family and IPT members to deal with complex circumstances and uncertainty. The TELOS best practices for decision making in the ICU focus on advanced care planning, caring for families who disagree with medical judgment, and honoring a patient s decision to be an organ donor. 5 Shared decision making in the ICU should begin early and engage the gold standard of advanced care planning that considers the values and preferences of the patient and family. 5 Discussions regarding low likelihood of survival and that further curative, aggressive care is physiologically futile should be initiated with sensitivity. Decisions to implement interventions should be made on the basis of whether the intervention can achieve the established goals of care. 5 Cardiopulmonary resuscitation should not be offered or performed for patients for whom scientific and empirical evidence has demonstrated that CPR is not medically indicated, will be of no benefit, and is physiologically futile. 5 Offering CPR in these situations or asking the family s permission not to perform CPR may cause the family unnecessary burdens. Physicians need to make and compassionately communicate these decisions to the family. Patients for whom shared decision making with the family has determined that the focus of care should be palliation should be moved to a designated palliative care bed or unit. To help families make difficult decisions, it can be helpful for the IPT to focus attention on what is in the best interest of the patient. Focusing on what is best for the patient and helping family members separate their suffering from that of the patient can relieve angst and promote appropriate and timely decision making. 5 If family members disagree with the physician s best medical judgment, they should not be challenged in a disdainful manner. If members of the IPT do not agree with the goals of care, they must not act in ways to sabotage the established goals and must not communicate their disagreement to the family. 5 An ethics consult should be initiated if conflicts arise. The decision of a patient to be an organ donor should be honored. If the patients are properly registered as organ donors, there is a moral and legal obligation to respect their autonomous decisions. 5,14 For families who, in spite of the patients valid decision to be organ donors, do not want to proceed with the donation, their angst may be reduced by knowing that there is evidence that most people do not want their families to reverse their decisions. 6 When shared decision making has called for the withdrawal of life-sustaining treatments, a plan must be orchestrated to meet the needs of the family while acting in the best interest of the patient. Once the decision has been made to withdraw life-sustaining care, TELOS directs that a nurse be the primary team member to implement the plans for withdrawal. 5 Nursing philosophy of caring, engagement, and healing makes nurses uniquely qualified to assume this responsibility. Any delay in withdrawal should be avoided as it may put undue stress on family members who are present and may put a disproportionate burden on the resources of the ICU. In cases of brain death, the timely removal of life-sustain ing support is required because there is likely no moral justification for utilizing ICU resources and personnel to provide prolonged postmortem care. 5 100 WWW.JOURNALOFTRAUMANURSING.COM Volume 18 Number 2 April June 2011

Implementing Best Practices Nationwide The goals of the trauma leadership forums convened by the American Trauma Society were to explore issues of end-of-life care for trauma victims and begin to propose solutions that could be implemented throughout the country. The next step is to implement TELOS nationwide. Trauma centers are being recruited as demonstration sites to implement and continue the evaluation of the TELOS project. Centers wishing to implement TELOS will need a core of dedicated trauma professionals to serve as the project leaders plus a multidisciplinary group to champion the project. A TELOS book of the best practices and an instructor s manual to guide the teaching of TELOS are available. 5,15 The TELOS book outlines best practice for end-of-life care in the prehospital setting, the ED, and the ICU. The instructor s manual outlines the steps needed to initiate and sustain TELOS. It provides a complete curriculum including slide presentations and evaluation materials for educating trauma professionals in all 3 environments of trauma care. CONCLUSION The ultimate vision for the TELOS project is that end-oflife care for trauma victims and their families (1) is right, meaning t hat it is based on scientific standards, and that it is good, meaning that it is based on the cultural, religious, and spiritual values and preferences of individuals; (2) is universally accessible; and (3) is compassionate in its support of human flourishing. 3 It is anticipated that the TELOS project will optimize resources to support quality end-of-life care and enhance the capabilities of trauma professionals to ease the suffering of dying trauma victims and their families. 3 Acknowledgments The development and implementation of the TELOS Best- Practice Model was supported by a grant from the Aetna Foundation. REFERENCES 1. Heron M, Hoyert DL, Murphy SL, Xu J, Kochanek KD, Tejada- Vera B. National Deaths: Final Data for 2006. Vital Statistics Reports; Vol 57 No. 14. Hyattsville, MD: National Center for Health Statistics; 2009. 2. American Trauma Society. Trauma Leadership Forum, End-of- Life Issues: Quality, Availability, and Ethics. Washington, DC: American Trauma Society; 2003. 3. Jacobs LM, Bennett Jacobs B, Burns KJ. A plan to improve endof-life care for trauma victims and their families. J Trauma Nurs. 2005;12(3):73-76. 4. Aristotle. Nicomachean Ethics. Ostwald M, trans-ed. Englewood Cliffs, NJ: Prentice Hall; 1962. 5. Bennett Jacobs B, Jacobs LM, Burns K. Trauma End-of-Life Optimum Support, a Best Practice Model for Trauma Professionals. Woodbury, CT: Cine-Med Publishing Inc; 2010. 6. Jacobs LM, Burns K, Bennett Jacobs, B. Trauma death: views of the public and trauma professionals on death and dying from injuries. Arch Surg. 2008;143(8):730-735. 7. Gadow S. Relational narrative: the postmodern turn in nursing ethics. Sch Inq Nurs Pract. 1999;13(1):57-69. 8. Taylor C. Values, ethics, & advocacy. In: Taylor C, Lillis C, LeMone P, eds. Fundamentals of Nursing. 6th ed. Philadelphia, PA: Lippincott Williams & Wilkins; 2007. 9. National Association of EMS Physicians (NAEMSP) Standards and Clinical Practice Committee and the American College of Surgeons Committee on Trauma. Guidelines for withholding or termination of resuscitation in prehospital traumatic cardiopulmonary arrest. J Am Coll Surg. 2003;196:475-481. 10. Hopson LR, Hirsh E, Delgado J, et al. National Association of EMS Physicians (NAEMSP) Standards and Clinical Practice Committee and the American College of Surgeons Committee on Trauma. Guidelines for withholding or termination of resuscitation in prehospital traumatic cardiopulmonary arrest. Prehosp Emerg Care. 2003;7:141-146. 11. Heaston S, Beckstrand RL, Bond AE, Palmer SP. Emergency nurses perceptions of obstacles and supportive behaviors in end-of-life care. J Emerg Nurs. 2006;32:477-485. 12. Henderson PD, Knapp JF. Report of the National Consensus Conference on family presence during pediatric cardiopulmonary resuscitation and procedures. J Emerg Nurs. 2006;32:23-29. 13. Lautrette A, Darmon M, Megarbane B, et al. A communication strategy and brochure for relatives of patients dying in the ICU. N Engl J Med. 2007;356:469-478. 14. Clark PA. To be or not to be a donor: a person s right of informed consent. Curr Opin Organ Transpl. 2003;8:334-340. 15. Bennett Jacobs B, Jacobs LM, Burns K. Trauma End-of-Life Optimum Support, Instructor Manual, Suggestions for Implementing the TELOS Model. Woodbury, CT: Cine-Med Publishing Inc; 2010. For more than 34 additional continuing education articles related to palliative and hospice care, go to NursingCenter.com/CE. JOURNAL OF TRAUMA NURSING WWW.JOURNALOFTRAUMANURSING.COM 101