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). A patient’s family may include parents or guardians, siblings, and extended family, all of whom have very diverse needs. Ideally, when a death is expected, do-not-resuscitate orders are in place and a planned withdrawal of support can occur, facilitating a more "peaceful" or "good" death for that patient and the patient’s family. Other times, death can be unexpected, occurring after a sudden accident or an unanticipated resuscitation. Multiple issues often arise, including, but not limited to, planning and implementing palliative care, explaining brain death, and offering the option of organ donation to patients’ families. Additionally, nurses in this setting must be able to meet their own self-care needs in order to cope with the challenges of providing family-centered care to these patients and their families at the end of life.
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Background
The Children’s Hospital PICU is a 38-bed multidisciplinary unit that provides care to diverse populations of patients, including, but not limited to, children with pulmonary disease, traumatic injuries, or oncological disorders and children undergoing extracorporeal membrane oxygenation, receiving kidney and liver transplants, or undergoing neuro-surgical procedures. In addition to their complicated diagnoses, many of these patients are from a wide variety of cultural backgrounds with diverse end-of-life beliefs and rituals. Although many patients cared for in this unit are admitted because of acute illnesses, a significant number are chronically ill. Children with chronic illnesses may be admitted to the PICU several times over the course of a year. Some of these admissions are for routine issues associated with the chronic illnesses; others are for acute, life-threatening events. The PICU nurses have developed lasting relationships with many of these children. These connections have important effects when nurses are dealing with end-of-life issues with these patients and the patients’ families.
The PICU Bereavement Committee was formed in an attempt to identify and meet the educational needs of the PICU nursing staff related to end-of-life issues. In addition to assessing the resources available in the institution, members of the committee reviewed the literature to investigate what end-of-life resources are available for pediatric critical care nurses. Although much has been written in both the nursing and medical literature to support the need for formalized end-of-life education for pediatric critical care practitioners,2–5 little has been written about educational programs geared specifically for this group of health-care professionals.
In 1998, the American Association of Colleges of Nursing developed the document "Peaceful Death: Recommended Competencies and Curricular Guidelines for End-of-Life Nursing Care"6 in an effort to address deficiencies in nursing educational preparation for end-of-life care. Fifteen competencies necessary for nurses to provide high-quality care to patients and their families at the end of life were identified (Table 2). Suggestions were made about how this material could be incorporated into an existing nursing curriculum. Most of these competencies could be adapted to pediatric critical care, allowing incorporation of the developmental needs of children.
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). ELNEC also released a course for pediatric end-of-life care in the fall of 2003.7 Wilkie et al9 have developed a multimedia toolkit (Toolkit for Nurturing Excellence at End-of-Life Transition) for use by nurse educators to teach end-of-life care. The toolkit consists of 6 modules (Table 3). The concepts of individual and cultural diversity, life span, family-centered care, collaboration, interdisciplinary care, setting of care, system of care, values, and attitudes are incorporated into each of the 6 modules.
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Methods
The PICU Bereavement Committee at Children’s Hospital of Philadelphia is a multidisciplinary group that was developed to educate and assist staff in dealing with end-of-life issues in the PICU. A PICU staff nurse chairs this committee. Members include PICU staff nurses and ancillary staff, the PICU social worker, the PICU child-life specialist, the PICU clinical nurse specialist, and a mental health clinical nurse specialist. The goals of this committee are to (1) identify the educational needs of the PICU staff surrounding end-of-life issues, (2) develop unit-based end-of-life resources, (3) develop formal and informal end-of-life educational programs, and (4) create different avenues for providing support for the PICU staff.
In order to determine the educational needs, a brief survey was distributed to the staff (Table 4). This survey was used to assess the staff ’s knowledge of existing resources for providing care at the end of life. Because of the low return rate (<30%) of the written surveys, members of the bereavement committee also met with staff in small focus groups. Using the written survey as a guideline, the committee members verbally assessed staff ’s knowledge of existing resources and identified the staff ’s educational requests. On the basis of the outcomes of these 2 methods, it was determined that the staff ’s educational needs could be grouped into 3 major categories: (1) availability of resources when dealing with the imminent or actual death of a child, (2) education on creating tangible memorabilia for parents and other family members, and (3) self-care strategies. Many of the staff, particularly the less experienced staff, also identified a lack of comfort in dealing with grieving families and requested opportunities to develop skills for interacting with such families.
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With these goals as a framework, the specific outline for the conference content (Table 5) was developed. Results of the needs assessment, brainstorming by committee members, assessment of the quality of previous presentations offered through the committee, the special needs specific to the PICU, and the availability of speakers were all considered. The content offered was focused on end-of-life issues that are pertinent to the pediatric critical care setting. The amount of time allotted to each session depended on a combination of content to be covered and time constraints.
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The day began with a self-assessment exercise run by one of the hospital’s mental health clinical nurse specialists. Participants completed a 20-item questionnaire to assess their current stress level (Table 6). This exercise provided each attendee an opportunity to individualize content by identifying stressors in his or her own life that might affect how he or she functions in the PICU. Later in the morning, the group met with the mental health clinical nurse specialist to discuss concrete strategies for dealing with these stressors and to identify strategies for self-care. Both of these sessions were interactive. The self-assessment was thought to be an important way to start the day because of the high-stress, high-intensity nature of the pediatric critical care setting. In addition, attendees also received written materials that provided them with additional strategies for self-care. These materials included information on physical and emotional manifestations of stress and coping strategies; hospital-based resources; a list of strategies to use when working with a dying child, and a self-preservation bibliography. Some of these materials were specific to dealing with end-of-life issues; others were more general.
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Preparing children for their own death or for the death of a sibling is one of the more difficult challenges faced by both staff and parents in the PICU. Two of the hospital’s child life specialists presented strategies to better prepare dying children and the children’s siblings. Through the use of a slide presentation and case examples, the specialists discussed the concept of legacy building with a child who is dying and provided examples of other memorabilia that a family can create. Legacy building is a process in which a dying child creates tangible items (ie, poems, journals, letters, scrapbooks) by which he or she can be remembered. By writing letters, making scrapbooks, or writing in journals, children are also able to say their good-byes and express their feelings in the way that works best for them. Working with a child life specialist, siblings often create memory boxes. This process is similar to that of legacy building. Memory boxes provide siblings with outlets for expressing their feelings of grief and loss and another way to say goodbye to their dying sibling. This session concluded with a review of the multitude of ways in which staff can use a child life specialist as a resource in the PICU at the end of life.
Parents of dying children often have many questions about the funeral process. This information is not typically included in most pediatric critical care orientation programs. The Bereavement Committee opted to include this information and invited the director of a funeral home to lead a roundtable discussion. The director opened the session with an overview of the funeral home process and provided information about families’ experiences when making funeral arrangements for a child. Following this introduction, the conversation was opened up to the staff to take in whatever direction they preferred. It was a lively discussion, and topics ranged from the cost of a funeral to the details of embalming.
Similar to other large urban teaching institutions, this hospital serves a very culturally diverse population. An educational need that has been identified in many forums, not just at the end of life, is that of cultural competency. Staff members have had introductions to a number of different cultural end-of-life practices while caring for patients in the PICU. It seemed essential to provide an overview of the end-of-life beliefs and practices of a number of the cultural groups seen at this institution in an effort to better prepare staff for future experiences. An emergency department physician who is well versed in cultural diversity was asked to participate in educating the PICU staff on pertinent cultural end-of-life issues. This program was a combination of a formal presentation and interactive case scenarios.
The day concluded with a hands-on activity. Patients’ family members have often expressed their gratitude at being able to leave the PICU after the death of their child with some type of tangible memento. Attendees were given an opportunity to see and create some of the memorabilia that are used with children and the children’s families in the PICU. One item that is routinely offered to patients’ families is a plaster handprint. Although greatly appreciated by the families, handprints can be a challenge to make. That process can be one of the most stressful parts of the end-of-life experience for a bedside nurse. This session provided a stress-free environment in which to practice and learn from the experience. Attendees worked in pairs, with each pair creating a handprint. Other materials (ie, heart-shaped containers that hold locks of hair, memory boxes, finger-paint handprints) were displayed. The PICU bereavement cart was also on display. This portable cart can be taken to the bedside as needed, and it contains all relevant end-of-life materials. Written materials listing available memorabilia and the resources for creating memorabilia were given to all who attended the conference.
Evaluation
This conference was originally planned solely for the multidisciplinary staff of the PICU. Upon further discussion, the conference was also offered to the multidisciplinary staff from the other critical care units in the hospital. Twenty-eight hospital staff attended this offering (see Figure). Most who attended were registered nurses from the PICU with a range of experience (1 year to 20+ years). Other attendees included nurses from the cardiac intensive care unit and the respiratory rehabilitation unit, child life specialists from the critical care settings, child life interns, a PICU unit clerk, and the PICU social worker.
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). The hands-on and interactive sessions received the highest ratings. Participants stated that they particularly enjoyed those sessions that did not follow the typical format of slides and lecture.
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The committee was pleasantly surprised by the overwhelmingly positive response to the conference. On the basis of the feedback from this conference and feedback from the PICU staff, it is apparent that ongoing end-of-life education is essential to meet the needs of all staff working in the PICU. This topic is of interest not only to nursing staff but also to all the disciplines that care for patients and patients’ families in this setting.
Future educational offerings are being planned on the basis of the evaluations from this conference. These sessions will be offered at a variety of times. Some will be full-day offerings; others will be partial-day offerings. Encouraging increased multidisciplinary participation (ie, respiratory therapists and physicians) may enhance the experience. The more education and discussion that we can share as a team, the better prepared we will be to meet the many needs of our patients and the patients’ families at the end of life.
In response to feedback from this conference, an evening educational program related to coping with the holidays was created. This program was focused on strategies to help staff and patients’ families deal with the hospitalization of a critically ill child during various holidays. The session was well attended, and there are plans to repeat it in the future.
Additional programs must be developed to provide all staff with practical strategies for self-care. The PICU is a stressful environment at the best of times. Even though caring for dying children is an expected aspect of PICU nursing, it still leaves PICU nurses with a myriad of powerful emotions and feelings.1 Development of a self-assessment tool that could be distributed and collected before any educational programs might enhance the ensuing discussions, and self-care strategies could then be individualized to meet the needs of all participants.
End-of-life education is an important component of any pediatric critical care curriculum. Although nurses are introduced to this topic as students, they have limited opportunities to put this theoretical knowledge into practice until they have graduated and are caring for these patients on a regular basis. Until more formal curricula are available, it will be left to individual organizations to develop programs to meet the needs of their staff.
References
This article has been cited by other articles:
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  W. Austin, J. Kelecevic, E. Goble, and J. Mekechuk An Overview of Moral Distress and the Paediatric Intensive Care Team Nursing Ethics, January 1, 2009; 16(1): 57 - 68. [Abstract] [PDF]
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 M. Shudy, M. L. de Almeida, S. Ly, C. Landon, S. Groft, T. L. Jenkins, and C. E. Nicholson Impact of Pediatric Critical Illness and Injury on Families: A Systematic Literature Review Pediatrics, December 1, 2006; 118(Supplement_3): S203 - S218. [Abstract] [Full Text] [PDF]
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 Pediatric end-of-life care Crit. Care Nurse, August 1, 2005; 25(4): 12 - 13. [Full Text] [PDF]
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