Embrace Hope: An End-of-Life Intervention to Support Neurological Critical Care Patients and Their Families

Abstract

Because of the acute nature of most neurological events, families are often faced with rapid processing of the illness with little time to realize that their loved one is going to die.Watching the dying process of patients in acute care settings can be unsettling for both patients’ families and staff. The neurocritical care unit at Riverside Methodist Hospital in Columbus, Ohio, wanted to offer help to families and patients traveling this difficult path. To support this goal, an organized, intentional, and flexible end-of-life intervention was needed. Using subjective data gathered from our neurocritical care staff and client families, we developed a plan of care called “Embrace Hope” to help patients and their families through the dying process. Embrace Hope is a structured multi-disciplinary delineation of end-of-life interactions that include educational and support information to be received immediately or at some point after the patient has died. In this article, we provide an overview of the specific items that made up the Embrace Hope intervention, and we use DJ’s story as an example of how the new intervention was applied.More than 50% of deaths in the United States occur in hospitals.1 More than 4 million patients are admitted to intensive care units in the United States annually, and of those admitted, approximately 500 000 or 10% to 20% die.2,3 As the population ages and technological support advances, needs related to end-of-life care increase. In an attempt to address this growing need, multiple organizations gathered in January 2005 to support a national consensus project for end-of-life care. The global goal of this group was to establish care standards for the period around the end of life. To achieve this goal, the group’s focus included symptom management and support of patients and their families during the dying process via adequate communication and decision making. This multiorganizational group identified the need to increase structural support in institutional settings and to identify areas for palliative care.1In a study performed by Teno et al,4 a mortality follow-back survey of approximately 1500 surrogates (next of kin) occurred. The focus of the study was to evaluate the dying experience of persons in the United States at home and in an institutional setting. Results indicated that people in the United States who died in institutions died with unmet needs for symptom amelioration, physician communication, emotional support, and respectful treatment.4A 2-year prospective observational study5 with more than 4300 end-of-life patients occurred from 1989 to 1991. The objectives of this study were to improve end-of-life decision making and reduce the frequency of a mechanically supported, painful, and prolonged process of dying. The study was focused on obtaining information from dying patients about treatment preferences and patterns of decision making among critically ill patients. Results of this study indicated shortcomings in practitioner communication, frequency of aggressive treatment, and family report of patients experiencing severe to moderate pain at the end of life.5 Of the patients included in the study, 38% had spent at least 10 days in the intensive care unit.5Mosenthal et al6 did a prospective, observational study of 42 trauma deaths before an intervention and 52 trauma deaths after an intervention. In that study, care was evaluated before a structured palliative care intervention was integrated into standard intensive care. Results from after the intervention indicated an ability to integrate palliative care interventions within this environment leading to earlier consensus on goals of care for dying trauma patients.6In 2001, the Society of Critical Care Medicine (SCCM) published recommendations for end-of-life treatment in the intensive care unit. The recommendations acknowledged the emerging perspective that palliative and intensive care are not mutually exclusive.7 Although some patients benefit from the transition to other care settings, others are so dependent on critical care technology that transfer is not possible. Therefore, SCCM recommended a series of interventions necessary for clinicians in intensive care units to ensure transition to death. Examples include preparing the team, ensuring patients’ comfort, offering a variety of ventilator withdrawal techniques, and learning communication skills to support patients’ families.7The American Academy of Critical Care Medicine in 2008 released a consensus document for end-of-life recommendations that update the 2001 version. Acknowledging that 95% of patients may not be able to make decisions themselves because of illness, patient- and family-centered decision making was acknowledged as the comprehensive ideal for end-of-life care. With this concept as the foundation, conflict resolution, family communication strategies, interdisciplinary team rounds, and practical considerations for withdrawal of care were discussed.8In 2006, the American Association of Critical-Care Nurses printed protocols for end-of-life issues in critical care. In this document, 5 major areas for end-of-life care were highlighted: symptom management, family issues, withdrawing or withholding support, communication and conflict resolution techniques, and caring for the caregiver.9Although the literature is compelling, situations similar to DJ’s were what prompted the NCC staff to focus on improving end-of-life care within our unit. About a year before DJ’s death, the unit had experienced 3 deaths of patients within 4 days, leaving the unit staff emotionally drained. As several bedside staff lamented that emotional support provided to families currently was perhaps not enough, an informal debriefing session began between multidisciplinary staff, bedside nurses, and advanced practice nurses. A vision of providing optimal end-of-life care to our patients and families through an organized intervention was formed. Driven by the desire of NCC staff and the needs of patients and their families in end-of-life situations, a multidisciplinary team gathered, literature was reviewed, and the concept of an end-of-life intervention that would enable families to embrace hope despite life-changing and life-ending circumstances was born.Although neuroscience practice involves aggressively treating patients and supporting their families during acute illness, death is also a reality. Because of the acute nature of most neurological events, families are often faced with rapid processing of the illness with little time to transition into the realization that their loved one is going to die. Additional stress occurs as catastrophic neurological injuries often leave patients incapable of making end-of-life decisions. These choices are then deferred to families that may never have discussed final wishes with their loved one. In these situations, practitioners are faced with the challenge of not only actively caring for patients, but also supporting families as they transition through the grieving process. Therefore, practitioners must learn to balance the difficult task of resuscitation with the art of compassionate end-of-life care.In order to ensure that the literature supported a comprehensive approach to our end-of-life care, a multidisciplinary team was selected to review the literature and assist in creating a unit-specific process.7–9 The team consisted of several bedside nurses, a patient care technician, a unit clerk, a case manager, a neurological social worker, a palliative care social worker, palliative care and hospice nurses, a unit-based family communication liaison, an intensivist, a neurosurgeon, 2 pastoral care representatives, and a neurological nurse practitioner team leader. Before moving forward, permission for monthly meetings was sought from and granted by the unit’s leaders.The name of the intervention, Embrace Hope, was selected. Despite the devastation of the death of their loved one, our goal was to provide immediate comfort as well as lasting memories that were not clouded by awkward or disorganized interactions with hospital staff. We wanted to relay our respect for their loved one, while giving families the freedom to customize the death to meet their family’s preferences by providing resources to support hope for the future. Building on the research that outlined a “good death” as one that provides physical and emotional support, creates shared decision making, and treats the dying person/family with respect, the group worked to create interventions that would span the continuum.10 The following sections provide an overview of this formalization process while using DJ’s case study to provide examples of the interventions designed to support NCC families.Appreciating the literature support for a multidisciplinary approach to end-of-life care,7–9 the group began work to solidify this approach. It became clear after the first several meetings that the group first needed to designate the roles and responsibilities among the involved disciplines. The goal was to optimize multidisciplinary skill sets and minimize duplication of tasks while spreading the emotional toll and workload between the involved disciplines. A flowsheet was developed to visually guide physicians, nurses, nurse practitioners, unit clerks, pastoral caregivers, social workers, communication liaisons, palliative caregivers, and hospice staff into potential roles at each phase of the Embrace Hope process.The Embrace Hope intervention did not begin until the physician indicated that the patient’s clinical condition had deteriorated to a futile situation. Often several conversations were necessary for family members to process the news and be able to make a decision about withdrawal of life support. These initial conversations were presented by either the attending physician or the nurse practitioner as directed by the attending physician. Early in the process of flowcharting the intervention, it became clear that many items could be accomplished by a number of staff. Through debate, the group reached consensus on lead individuals for given tasks indicated by an asterisk on the diagram. This person was responsible for driving the completion on this item or communicating the need for a replacement if he or she were unavailable. Having multiple people qualified for each item ensured that the process would not break down if death occurred during off hours or if other clinical situations pulled someone in a different direction.As outlined by the Academy of Critical Care Medicine, competent practitioners require specific end-of-life education.7 The Institute of Medicine states that poor end-of-life care sometimes happens because health care professionals are not trained well.11 The NCC end-of-life team believed similarly and proactively sought to train providers on end-of-life care. To achieve this educational foundation, 4 hours of content was crafted by the multidisciplinary team. Management of the NCC required that all full-time and part-time patient care technicians and nursing staff participate in the training. A total of 5 repeat sessions were taught by members of the Embrace Hope team at various times of day to accommodate day and off-shift schedules. One session was taped so that new hires could also receive the training. Nurse and technician training included content on the components of the Embrace Hope structured process, symptom onset/management during terminal stages, communication techniques during grief, cultural considerations of dying, and institutional resources available to support end-of-life care. Content from the 2001 End-of-Life Nursing Education Consortium was used in all educational sections except the institution-specific topics.12 Physician education was 1 hour and included a brief overview of the Embrace Hope intervention and evidence-based symptom management given by the palliative care physician. The suggestions related to symptom management that were presented corresponded to recommendations and guidelines from the SCCM and the American Academy of Critical Care Medicine.7,8In a busy intensive care unit, it is important for all team members to be engaged in the end-of-life process. As outlined in the SCCM guidelines, ensuring an environment conducive to emotional and physical intimacy is also a goal.7 To create this environment, minimization of potential disruptions of family time with the patient were needed. To this end, 2 types of signs were created that notified hospital workers of the situation. The first sign contains the words “Please See Nurse Prior to Entering Room.” This paper sign was stored with other Embrace Hope paperwork to facilitate placement on the patient’s door after the end-of-life decision has been made. The second form of notification is a magnet with the letters EH, for Embrace Hope. This magnet is placed next to the patient’s name on the unit’s communication board. These 2 simple measures ensure that staff at all levels of service will be aware that additional sensitivity with activities is needed for these patients and their families.As stated in the SCCM end-of-life recommendations, attention to detail can make an enormous difference in how the patient and the patient’s family perceive the final moments.7 The Embrace Hope care team developed a number of interventions to assist staff in supporting patients’ family members as they transitioned through the grieving process. The process began in the family conference room. This closed room contained multiple chairs and couches, tissue boxes, water, phone access, and a wall quilt to create a private, comfortable setting to receive updates. This attention to detail addresses the family’s physical comfort as they emotionally process the death of their loved one.7Once the family’s physical needs were tended to, an organized rollout of the end-of-life tools needed to be created to support efficient and compassionate execution by staff. The team decided on a fabric envelope that would be stocked with intervention materials and centrally stored (Figure 1). The concept of the envelope came from a pastoral intern who was included on the team and who had experience with a similar item in a hospital in Toledo, Ohio. A local fabric dealer, Boone Fabrics in Columbus, Ohio, was approached and graciously agreed to donate fabric on an ongoing basis. Cloth pouches were created by Riverside Methodist Hospital’s sewing guild. The fabric design was selected for the huggable nature of the product that also afforded room to place cards, pictures, and additional mementos that may have accumulated throughout the patient’s stay in the NCC. Paperwork to be completed by the staff or given to the family was separated into 2 sections. The first section was to be used right away, and the family could refer to the second section immediately or after they returned home.In January 2006, the Joint Commission outlined a national safety goal to improve handoffs of patients.13 Although this concept is not generally thought to apply to a withdrawal situation, staff in the NCC decided that a communication handoff tool would be useful to standardize end-of-life care. Appreciating the number of staff that be involved in providing various a paper was created and to support an organized transition for staff and for patients’ families (Figure The is with the bedside paperwork and can be on by staff from care not a the that all components of the Embrace Hope intervention are the order of or the providing the care. The of items that are completed from to but in This time is emotional for all family and staff involved in the care of the This focus care and staff to that all the necessary have been for the leaving more time to the additional to provide comfort is to the patient and the patient’s family in what a “good death” to This process by staff the family’s cultural and that families are more clinicians time to and the their for their loved one during the dying also an important in end-of-life and not be as In order to respect and the of each family’s cultural and the NCC staff developed a cultural needs Through subjective data from staff, it was clear that these conversations was for some NCC nurses. To minimize this a structured was created to begin the process of the family in what they needed from to support the respectful death they As we for a process, The Of was developed by using the pastoral care cultural and (Figure The addresses 3 specific about and what is most important to the at this this is by the nurse but as other with the additional often The and use of family preferences assist all staff in the plan of care to make the through death a experience for the patient’s and care for dying patients and their families can be to staff and from the on what to next may and family that on preparing the patient and the patient’s family for the withdrawal process is With DJ’s physical and needs for the the staff focused on and DJ’s family about what to as time To assist with this a (Figure was designed by the Embrace Hope team to help families simple that can occur during the transition from life to death. some families, this may be their first experience of this experience may emotional or may death as a from others may focus on to help during this Although each patient’s is the signs and of the dying process as and in and In situations withdrawal or withholding of care is this is and by the staff to the patient’s an initial of this the Embrace Hope that death required a educational given the of This also was created (Figure death, or withholding care are the circumstances death, practical comfort measures are during this review and families are to participate in their loved care as they were taught about what to during the dying process, and staff during this With this support and the goal was to support families in offering the of that can be so as they on this time in their To this end, are are or within the and for families to provide care or in are the and project plan of the Embrace Hope intervention, the multidisciplinary team on many to what they could to families memories of their loved one. The team decided that that family members could in their or that could be placed in the to would be that could be The developed into family members a of as a of their loved a of from a dying loved one was a practice in the The was then and placed into or made into other our this was in the and with death. this the team decided to use a the of the families that we would be the team decided to make it to and document from the family to the of so would and respect for cultural or that may of the or of the patient’s of as the of the patient’s and the number of to 1 or 2 to minimize the of this the of potential process was to provide lasting memories for families as One of these was to offer to create a of a loved one (Figure the hospital is and are only grieving of can be and the of one we loved can of how that person our life. A created by an Embrace Hope team was included in the of the to the hope that can in were to each with available in a additional be The of the printed was down so that it did not the loved in and was to support the and improve The of the paper to the that became the process. This and in a of art of the of the grieving process as families home to their they are with of loved In with recommendations for the members of the Embrace Hope team wanted to support this transition to home after a loved death. The first was to provide a with practical items and support items included how to create an create and from support and their phone were also included for these were to be useful after the of care had and the concept of the family’s new to these practical the staff wanted to to the families that we to their loved one. To 2 items are from the and until after the families have These items are a for the family (Figure and a of 1). The concept supported in the SCCM the quilt as the of the items in the and is on the unit for a period of 1 to 2 after the patient’s death. This time staff time to sign the the 2 after the death the that will occur during a time to be with the was a of in a The was selected by the Embrace Hope team as a that would and in of their family concept of Embrace Hope was but of the process was at In to the of care, a process to the of support needed to the for the families is the most of this who a group of our hospital the A was created as a for the and is in a for ongoing items needed for families, as of cards, “Embrace Hope” for and additional tools are also in the at the unit are available in One can be for from of the Embrace Hope intervention in the a for a order for withdrawal of care was (Figure before and after the Embrace Hope intervention were completed by staff nurses, and indicated in staff ability to provide a “good “good death” was as a death that was from pain and with a patient’s and with and clinical the end-of-life intervention was practitioners also a in to their ability to provide end-of-life care A total of patient’s next of kin) were also about the end-of-life care provided in the NCC. surrogates completed before the intervention and surrogates completed after the intervention. in the emotional support and care provided were on was by surrogates in to symptom communication, and emotional support provided by NCC staff (Figure We to research but that work is of the Embrace Hope intervention and the process of the withdrawal order within the NCC has prompted other units within the hospital to create similar to support their patients. the palliative care unit and several other critical care units are the process to the available and the needs of their specific of work and on supporting patients and their families at the end of care can be provided within the of critical care the skill sets of an multidisciplinary team a structured intervention that caring while a for team staff from the intervention that providing a structured intervention to an end-of-life plan that a in the of staff. In the words of one in the memories of those who Through the transition of critical care to caring our desire is to our to enable more memories for families of intensive care patients end-of-life care so that they can Embrace Hope.