- Email: [email protected]
Can the Death of a Child Be Good?
Can the Death of a Child Be Good? Susan Bush Welch, MS, RN, CPNP
Fifty-four thousand children die each year despite the advances in care for children with acute and chronic illnesses. Demands for improved palliative and end-of-life care for children exist. Good death is a concept frequently used in the adult hospice movement. However, how can the death of a child be good? Analysis of good death can assist pediatric nurses to understand the concept and provide a framework for nurses in the clinical and research arenas to work together to develop and provide evidence-based, developmentally appropriate care for dying children and their families. © 2008 Elsevier Inc. All rights reserved.
Sally and Joe Smith delivered a beautiful 7 lb 8 oz baby girl whom they named Maura. Maura was perfect from the forehead down but had anencephaly and therefore was born without a cerebrum and the top of her head. Sally and Joe knew from a prenatal ultrasound about Maura's anencephaly and decided to go forward with the pregnancy after much information gathering and prayer. The perinatal hospice team at the hospital provided information and support to Sally, Joe, and the other members of their family during the pregnancy. Sally and Joe knew they wanted to take Maura home if she lived long enough postdelivery, and hence, the perinatal hospice team made those arrangements. Maura was stable, roomed in with Sally, and went home at Sally's discharge from the hospital. Joe, Sally, and their extended family cared for and loved Maura by singing to and holding her around the clock. Neighbors, friends from work and church, their pastor, and the hospice team provided support to the Smith family through provision of meals, cards, visits, and prayer. Maura, who experienced no pain or distress, took her last breath in her mother's arms at 8 days of age.
Poster presentation of “Concept Analysis of Good Death” at Southern Nursing Research Society, February 2005. From the School of Nursing, Marshall University, Huntington, WV. Corresponding author. Susan Bush Welch, MS, RN, CPNP, Marshall University School of Nursing, 1 John Marshall Drive, Huntington, WV 25755. E-mail: [email protected]. 0882-5963/$ - see front matter © 2008 Elsevier Inc. All rights reserved. doi:10.1016/j.pedn.2007.08.015
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DVANCES IN THE provision of care for children with acute and chronic illnesses allow children to grow and thrive. Yet, despite these advances, 54,000 children die each year in the United States (Children's Hospice International [CHI], 2004; Initiative for Pediatric Palliative Care, 2003; National Hospice and Palliative Care Organization [NHPCO], 2001). Given that reality, it is vital that those dying children and their families receive comprehensive and compassionate end-oflife care. In recognition of that need, there exists a growing movement toward improving pediatric palliative and end-of-life care. The pediatric literature is replete with commentaries and articles advocating better care for the dying child and their families (American Academy of Pediatrics Committee on Bioethics and Committee on Hospital Care, 2000; Feudtner, 2004; Hutton, 2002; Milstein, 2003; Rushton & Catlin, 2002; Sandler, Kennedy, & Shapiro, 2004; Stephenson, 2000). A 2001 report by the NHPCO addressed the dire need for and unique issues of pediatric palliative care. The American Academy of Pediatrics in 2000 called for “the development of clinical policies and minimum standards that promote the welfare of infants and children living with lifethreatening or terminal conditions and their families, with the goal of providing equitable and effective support for curative, life-prolonging and palliative care.” The 2003 Institute of Medicine (IOM) report When Children Die: Improving Palliative and End-of-Life Care for Children and Their Families comprehensively discussed pediatric palliative care as a means to facilitate a good or decent death.
Journal of Pediatric Nursing, Vol 23, No 2 (April), 2008
CAN THE DEATH OF A CHILD BE GOOD?
Good death is a concept much used by those who work with persons near the end of life. However, it is not usually a concept one connects to dying infants and children. How can the death of a child be good? However, good death is implicit in the calls for improved end-of-life care for children. Is it not what pediatric nurses seek for their dying patients, a death that is free of pain, a peaceful death, or, in other words, a good death? Through use of a concept analysis, this article will familiarize pediatric nurses with the concept of good death. CONCEPT ANALYSIS Concepts are the building blocks of knowledge. Yet, the role of concepts and conceptual frameworks in nursing is controversial. Nurses debate the value of concepts to improve patient care delivery. Many in nursing recognize the vital role that concepts and development of concepts play in the growth of nursing knowledge as a unique and legitimate form of scientific inquiry (Rodgers & Knafl, 2000). Concept analysis is one such form of inquiry. Concept analysis allows for the clarification of words used when nurses communicate (Walker & Avant, 2005). Concept analysis is a vigorous mental exercise with many methods to conduct the analysis. One such method is the Wilson method of concept analysis as adapted by Walker and Avant, which guided this analysis. Walker and Avant (2005, p. 65) propose eight simultaneously occurring steps: 1. Select a concept 2. Determine the aims or purposes of the analysis 3. Identify all uses of the concept that can be discovered 4. Determine the defining attributes 5. Construct a model case 6. Construct contrary, borderline, related, and invented cases 7. Identify antecedents and consequences 8. Define empirical referents The following draws from a more comprehensive concept analysis and presents an abbreviated analysis of the concept of good death. USE OF THE CONCEPT OF GOOD DEATH No standard dictionary definition for good death exists. Many authors use the IOM definition: “A
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good death is one that is free from avoidable distress and suffering for patients, families and caregivers; in general accord with patients' and families' wishes; and reasonably consistent with clinical, cultural, and ethical standards” (Field & Cassel, 2003, p. 40). Not surprising, other views of good death exist, which authors from many disciplines shared in their writings over the past 15 years. Some articles are of a more philosophical nature whereas others are research oriented.
Philosophical Papers Writers from different disciplines challenged the existence of good death and suggested that cultural ideals of good death could impose behavioral expectations of the dying (Ellison & Fuller, 1998; Hart, Sainsbury, & Short, 1998; Walters, 2004). Scholars in the health sciences discussed the tension between clinical research and optimal endof-life care (Agrawal & Danis, 2002). Clients often seek clinical trials as a last effort to survive. The discussed tension manifests itself in the conflicting roles of the physician scientist to learn about the efficacy of the protocol in which the client enrolls versus providing optimal end-of-life care or a good death for that client (Agrawal & Danis, 2002). Some authors proposed factors that they believe indicate a good death. Gazelle (2003) described personal growth as a hospice medical director and offered the following opinion: “Death is rarely good, but a constellation of factors add up to a better death” (p. 95). Aggressive treatment of signs/symptoms of discomfort, exploring the impact of illness on quality of life of person and family to improve coping, being present through all the patient's and family's experience at the end of life, and assisting with living as well as possible until death without fear of loss of dignity, dying alone, or being in pain were all factors of a “better death” (Gazelle, 2003). Emanuel and Emanuel (1998) proposed a framework for death with six modifiable factors of the patient's experience and five categories of intervention that affects the overall death process. Patient modifiable factors included physical symptoms, psychological and cognitive symptoms, social relationships and support, economic demands and caregiving needs, spiritual and existential belief, and hopes and expectations, whereas interventions fell under the categories of family and friend, social, medical provider, health care institution, and socioeconomic (Emanuel & Emanuel, 1998).
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Research Perspectives of Good Death Much of the research related to good death explored what people considered a good death. Samples in those studies were diverse and included professionals only, patients only, or mixed groups of patients, professionals, and families. All groups showed great variety of view about good death. Common themes for those asked included the following: comfort/pain and symptom management, the presence of someone, preparation/decision making, dignity/affirmation of whole person, and, surprisingly, not knowing (Hopkinson & Hallett, 2002; Kim & Lee, 2003; Pierson, Curtis, & Patrick, 2002; Steinhauser et al., 2000; Vig, Davenport, & Pearlman, 2002; Vig & Pearlman, 2004). A multidisciplinary focus group of eight hospice workers developed a map of the “final journey of life,” which included resolution of emotional, relationship, and spiritual levels as well as refocusing on living to dying, transcendence, and physical manifestations of the dying process (Forbes & Rosdahl, 2003). Mak and Clinton (1999) reviewed the literature of good death to ascertain if hospice clients achieved an acceptable death. The researchers identified seven elements of a good death: comfort or relief from pain and suffering, opening or being aware of dying, completion or accepting the timing of one's death, control, optimism (keeping hope alive), readiness/preparing for departure, and location/living with one's choice about where to die (Mak & Clinton, 1999). After the conclusion of a large-scale study conducted by the IOM, the editors of the report summary noted that too many dying people suffered needless pain and distress because of the many impediments to appropriate care and gaps in science about end of life (Field & Cassel, 1997). Quantifying Good Death Some researchers sought to measure good death by creating a tool. Ternestedt, Andershed, Eriksson, and Johansson (2002) developed a chart audit tool to analyze whether or not hospice patients experienced a good death according to six “S” criteria: symptom control, social relationships, self-determination, self-image, synthesis (patient sums up life), and surrender. Developers of the Quality of Dying Apgar, adapted from the neonatal APGAR score, included pain, nonpain symptoms, advance care planning, peace/dignity, and duration as the five
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main criteria for a good death in renal patients (Cohen, Poppel, Cohn, & Reiter, 2001). Steinhauser et al. (2002) proposed to measure quality of life at the end of life with the QUAL-E. Researchers at the University of Washington developed and validated the 31-item Quality of Dying and Death Instrument (QODD) for which family members rated (after their loved ones death) the frequency and quality of the following domains: symptom and personal care, preparation for death, moment of death, family, treatment preferences, and whole-person concerns (Curtis et al., 2002; Patrick, Curtis, Engelberg, Nielsen, & McCown, 2000). Refinement of the original QODD resulted in two different adaptations for use in the intensive care unit setting, one with 23 items and the other with 14 items (Hodde, Engelberg, Treece, Steinberg, & Curtis, 2004; Levy et al., 2005; Mularski, Curtis, Osborne, Engelberg, & Ganzini, 2004; Mularski, Heine, Osborne, Ganzini, & Curtis, 2005). KEY ATTRIBUTES OF GOOD DEATH “A good death is hard to define, however, for a good death is as complex as the good life of which it is an extension” (Kahn & Steeves, 2001, p. 811). Identification of the key attributes of good death follows the review and analysis of the literature. Key attributes are the characteristics that occur frequently with review of how the concept is used and thus help to define concepts (Walker & Avant, 2005). Journey, comfort, and loving presence comprised the key attributes of good death. The definition for journey was the internal and external passage from one place or stage to another. The individual experience of satisfaction in the physical, spiritual, social, psychological, and environmental domains described comfort. The definition of loving presence included the following: a being there/being with persons in the past, present, and beyond as well as with a higher power in which the exchange of transforming energy (love) occurs. Once identification of key attributes occurred, the following definition emerged. Good death is the journey one embarks upon at the end of life, which occurs in comfort amid a loving presence. Creation of a model may assist in the understanding of a concept. Therefore, the next step involved creation of a model of good death (see Figure 1). The black spiral with arrows on both ends
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Figure 1.
Model of good death.
illustrates the inward and outward journey of the dying person. Illustration of comfort occurs by use of the oval. Loving presence, the purple field, surrounds the dying person, and the purple bidirectional arrows denote the exchange of love between the dying person and the loving presence. CASES, ANTECEDENTS, CONSEQUENCES, AND EMPIRICAL REFERENTS OF GOOD DEATH The development of cases allows one to see how the concept might appear or not in the real world (Walker & Avant, 2005). Cases include the defining attributes in some manner and provide perfect, incomplete, or opposite examples of the concept that helps one to visualize the concept. The story about the child with anencephaly represents a model case of a good death. Antecedents are events that must precede the occurrence of the concept, and conversely, consequences occur afterward (Walker & Avant, 2005). A few antecedents critical to a good death include the following: one must be alive, have a limited life span, and have a spirit/heart open to give and/or receive love. Consequences of good death include total comfort, peace, closure, serenity, and transcendence for the dying individual. Families of the deceased would also experience closure, sadness, and resolution with less problems of ineffective grief. Empirical referents are real-world phenomena that demonstrate the existence of the concept
(Walker & Avant, 2005). As noted earlier, some researchers are developing tools to measure the occurrence of a good death. However, to see good death, one needs only to visit or care for a dying person. Look at the person's face and body for absence of cues of discomfort such as furrowed brow, muscle tenseness, sweating, or moaning/crying. Examine the words and behavior of the person for verbalizations or manifestations of spiritual, psychological, and physical comfort. Are family and friends about, tending lovingly to the dying person? Has the dying person made plans on how to live the rest of his or her life and plans for death? Are they unafraid? When one is witness to a good death, one knows it. RELEVANCE TO PEDIATRIC NURSES Concepts must exist for purposes other than intellectual exercises but should have some use in the “real” world. Both clinical nursing practice and research use the concept of good death. It does not matter if the patient is a neonate with a life-limiting congenital anomaly, a 16-year-old trauma victim, or a 5-year-old child with cancer. Pediatric nurses always seek to provide peace, pain control, support, and decision making/control for dying children and their families. Are these not elements of a good death? Yet, how many of those nurses call what they do as promoting a good death? For too long, the focus of caregivers and researchers of good death was on adults. The
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expansion of that focus now allows the inclusion of the dying child as evidenced by recent articles in the pediatric literature and initiatives such as CHI and the End of Life Nursing Education Consortium Pediatric Palliative Care program. However, much still needs to be done. Future research specific to the dying child should explore the following: trajectories of the various congenital anomalies and other acute and chronic conditions that shorten a child's life and the outcomes of palliative protocol/care on delivery of care, comfort, and site of care. As for families, nursing needs not only more data on what families define as a good death and their short- and long-term needs to care for their child and cope with the inevitable loss but also to learn which families would benefit from home care versus inpatient care. Siblings, grandparents, and health care professionals, also impacted by a child's death, have needs that needs to be explored.
Removal of barriers to palliative/hospice care for children includes changes in health care policy to include a hospice benefit for children and hospice policies that limit admission to those with a life expectancy of 6 months or less. Some programs that provide comprehensive palliative care for children already exist; however, most operate out of children's hospital in large urban areas. Health care providers and hospices in smaller cities and rural areas need educational assistance and support to care for dying infants. Pediatric nurses in the clinical and research arenas need to work together to develop evidencebased, developmentally appropriate care of the dying child and their families. Having a clear, consistent view of the concept of good death is just one step toward that reality. Dr. Jay Milstein (2003, p. 336) stated it so eloquently when he wrote “It may be painful to accompany a child or sibling on his or her final journey, but the experience has the power to transform lives.”
REFERENCES Agrawal, M., & Danis, M. (2002). End-of-life care for terminally ill participants in clinical research. Journal of Palliative Medicine, 5, 729−737. American Academy of Pediatrics Committee on Bioethics and Committee on Hospital Care. (2000). Palliative care for children. Pediatrics, 106, 351−357. Children's Hospice International (CHI). (2004). An unmet need. Retrieved 5-31-2004 from: http://www.chionline.org/ resources/about.phtml. Cohen, L. M., Poppel, D. M., Cohn, G. M., & Reiter, G. S. (2001). A very good death: Measuring quality of dying in endstage renal disease. Journal of Palliative Medicine, 4, 167−172. Curtis, J. R., Patrick, D. L., Engelberg, R. A., Norris, K., Asp, C., & Byock, I. (2002). A measure of the quality of dying and death. Initial validation using after-death interviews with family members. Journal of Pain and Symptom Management, 24, 17−31. Ellison, S., & Fuller, J. D. (1998). A good death? Finding a balance between the interests of patients and caregivers. Generations, 22, 87−91. Emanuel, E. J., & Emanuel, L. L. (1998). The promise of a good death. Lancet, 351, SII21. Feudtner, C. (2004). Perspectives on quality at the end of life. Archives of Pediatrics & Adolescent Medicine, 158, 415. Field, M., & Cassel, C. (Eds.). (2003). When children die: Improving palliative and improving end-of-life care for children and their families. Washington, DC: National Academies Press. Field, M., & Cassel, C. (Eds.). (1997). Approaching death: Improving care at the end of life (free executive summary). Retrieved 5/31/2004 from: http://books.nap.edu/catalog/5801.html. Forbes, M. A., & Rosdahl, D. R. (2003). The final journey of life. Journal of Hospice and Palliative Nursing, 5, 213−220. Gazelle, G. (2003). A good death: Not just an abstract concept. Journal of Clinical Oncology, 21, 95S−996S. Hart, B., Sainsbury, P., & Short, S. (1998). Whose dying? A sociological critique of the ‘good death’. Mortality, 3, 65−77. Hodde, N. M., Engelberg, R. A., Treece, P. D., Steinberg, K. P., & Curtis, J. R. (2004). Factors associated with nurse
assessment of the quality of dying and death in the intensive care unit. Critical Care Medicine, 32, 1648−1653. Hopkinson, J., & Hallett, C. (2002). Good death? An exploration of newly qualified nurses' understanding of good death. International Journal of Palliative Nursing, 8, 532−539. Hutton, N. (2002). Pediatric palliative care: The time has come. Archives of Pediatrics & Adolescent Medicine, 156, 9. Initiative for Pediatric Palliative Care. (2003). About IPPC. Retrieved 6-21-2004 from: http://www.ippcweb.org/print/ printabout.asp. Kahn, D., & Steeves, R. (2001). Narrative of dying aimed at understanding a ‘good death’: A spouse's story. In B. R. Ferrell, & N. Coyle (Eds.), Textbook of palliative nursing (pp. 811−916). Oxford: Oxford University Press. Kim, S., & Lee, Y. (2003). Korean nurses' attitudes to good and bad death, life-sustaining treatment and advance directives. Nursing Ethics, 10, 624−637. Levy, C. R., Ely, E. W., Payne, K., Engelberg, R. A., Patrick, D. L., & Curtis, J. R. (2005). Quality of dying and death in two medical ICUs. Chest, 127, 1775. Mak, J. M. H., & Clinton, M. (1999). Promoting a good death: An agenda for outcomes research—A review of the literature. Nursing Ethics, 6, 97−106. Milstein, J. M. (2003). Detoxifying death in the neonate: In search of meaningfulness at the end of life. Journal of Perinatology, 23, 333−336. Mularski, R. A., Heine, C. E., Osborne, M. L., Ganzini, L., & Curtis, J. R. (2005). Quality of dying in the ICU: Ratings by family members. Chest, 128, 280−287. Mularski, R., Curtis, J. R., Osborne, M., Engelberg, R. A., & Ganzini, L. (2004). Agreement among family members in their assessment of the quality of dying and death. Journal of Pain and Symptom Management, 28, 306−315. National Hospice and Palliative Care Organization (NHPCO). (2001). A call for change: Recommendations to improve the care of children living with life-threatening conditions. Retrieved 6-1-0004 from: www.nhpco.org/files/public/ ChIPPSCallforChange.pdf.
CAN THE DEATH OF A CHILD BE GOOD?
Patrick, D. L., Curtis, J. R., Engelberg, R. A., Nielsen, E., & McCown, E. (2000). Measuring and improving the quality of dying and death. Annals of Internal Medicne, 139, 410. Pierson, C. M., Curtis, J. R., & Patrick, D. L. (2002). A good death: A qualitative study of patients with advanced AIDS. AIDS Care: Psychological & Socio-Medical Aspects of AIDS/HIV, 14, 587−598. Rodgers, B., & Knafl, K. (2000). Introduction to concept development in nursing. In B. Rodgers, & K. Knafl (Eds.), Concept development in nursing: Foundations, techniques, and applications (2nd ed., pp. 1–6). Philadelphia: Saunders. Rushton, C. H., & Catlin, A. (2002). Pediatric palliative care: The time is now! Pediatric Nursing, 28, 57. Sandler, I., Kennedy, C., & Shapiro, E. (2004). Parental grief and palliative care requires attention. Archives of Pediatrics & Adolescent Medicine, 158, 590. Steinhauser, K. E., Bosworth, H. B., Clipp, E. C., McNeilly, M., Christakis, N. A., Parker, J., et al. (2002). Initial assessment of a new instrument to measure quality of life at the end of life. Journal of Palliative Medicine, 5, 829−841. Steinhauser, K. E., Clipp, E. C., McNeilly, M., Christakis, N. A., McIntyre, L. M., & Tulsky, J. A. (2000). Perspective. In
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search of a good death: Observations of patients, families, and providers. Annals of Internal Medicine, 132, 825−832. Stephenson, J. (2000). Palliative and hospice care needed for children with life-threatening conditions. Journal of the American Medical Association, 284, 2437−2438. Ternestedt, B., Andershed, B., Eriksson, M., & Johansson, I. (2002). A good death: Development of a nursing model of care. Journal of Hospice and Palliative Nursing, 4, 153−160. Vig, E. K., & Pearlman, R. A. (2004). Good and bad dying from the perspective of terminally ill men. Archives of Internal Medicine, 164, 977−981. Vig, E. K., Davenport, N. A., & Pearlman, R. A. (2002). Good deaths, bad deaths, and preferences for the end of life: A qualitative study of geriatric outpatients. Journal of the American Geriatrics Society, 50, 1541−1548. Walker, L., & Avant, K. (2005). Strategies for theory construction in nursing (4th ed.). Upper Saddle River, NJ: Pearson/Prentice Hall. Walters, G. (2004). Is there such a thing as a good death? Palliative Medicine, 18, 404−408.
Fifty-four thousand children die each year despite the advances in care for children with acute and chronic illnesses. Demands for improved palliative and end-of-life care for children exist. Good death is a concept frequently used in the adult hospice movement. However, how can the death of a child be good? Analysis of good death can assist pediatric nurses to understand the concept and provide a framework for nurses in the clinical and research arenas to work together to develop and provide evidence-based, developmentally appropriate care for dying children and their families. © 2008 Elsevier Inc. All rights reserved.
Sally and Joe Smith delivered a beautiful 7 lb 8 oz baby girl whom they named Maura. Maura was perfect from the forehead down but had anencephaly and therefore was born without a cerebrum and the top of her head. Sally and Joe knew from a prenatal ultrasound about Maura's anencephaly and decided to go forward with the pregnancy after much information gathering and prayer. The perinatal hospice team at the hospital provided information and support to Sally, Joe, and the other members of their family during the pregnancy. Sally and Joe knew they wanted to take Maura home if she lived long enough postdelivery, and hence, the perinatal hospice team made those arrangements. Maura was stable, roomed in with Sally, and went home at Sally's discharge from the hospital. Joe, Sally, and their extended family cared for and loved Maura by singing to and holding her around the clock. Neighbors, friends from work and church, their pastor, and the hospice team provided support to the Smith family through provision of meals, cards, visits, and prayer. Maura, who experienced no pain or distress, took her last breath in her mother's arms at 8 days of age.
Poster presentation of “Concept Analysis of Good Death” at Southern Nursing Research Society, February 2005. From the School of Nursing, Marshall University, Huntington, WV. Corresponding author. Susan Bush Welch, MS, RN, CPNP, Marshall University School of Nursing, 1 John Marshall Drive, Huntington, WV 25755. E-mail: [email protected]. 0882-5963/$ - see front matter © 2008 Elsevier Inc. All rights reserved. doi:10.1016/j.pedn.2007.08.015
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DVANCES IN THE provision of care for children with acute and chronic illnesses allow children to grow and thrive. Yet, despite these advances, 54,000 children die each year in the United States (Children's Hospice International [CHI], 2004; Initiative for Pediatric Palliative Care, 2003; National Hospice and Palliative Care Organization [NHPCO], 2001). Given that reality, it is vital that those dying children and their families receive comprehensive and compassionate end-oflife care. In recognition of that need, there exists a growing movement toward improving pediatric palliative and end-of-life care. The pediatric literature is replete with commentaries and articles advocating better care for the dying child and their families (American Academy of Pediatrics Committee on Bioethics and Committee on Hospital Care, 2000; Feudtner, 2004; Hutton, 2002; Milstein, 2003; Rushton & Catlin, 2002; Sandler, Kennedy, & Shapiro, 2004; Stephenson, 2000). A 2001 report by the NHPCO addressed the dire need for and unique issues of pediatric palliative care. The American Academy of Pediatrics in 2000 called for “the development of clinical policies and minimum standards that promote the welfare of infants and children living with lifethreatening or terminal conditions and their families, with the goal of providing equitable and effective support for curative, life-prolonging and palliative care.” The 2003 Institute of Medicine (IOM) report When Children Die: Improving Palliative and End-of-Life Care for Children and Their Families comprehensively discussed pediatric palliative care as a means to facilitate a good or decent death.
Journal of Pediatric Nursing, Vol 23, No 2 (April), 2008
CAN THE DEATH OF A CHILD BE GOOD?
Good death is a concept much used by those who work with persons near the end of life. However, it is not usually a concept one connects to dying infants and children. How can the death of a child be good? However, good death is implicit in the calls for improved end-of-life care for children. Is it not what pediatric nurses seek for their dying patients, a death that is free of pain, a peaceful death, or, in other words, a good death? Through use of a concept analysis, this article will familiarize pediatric nurses with the concept of good death. CONCEPT ANALYSIS Concepts are the building blocks of knowledge. Yet, the role of concepts and conceptual frameworks in nursing is controversial. Nurses debate the value of concepts to improve patient care delivery. Many in nursing recognize the vital role that concepts and development of concepts play in the growth of nursing knowledge as a unique and legitimate form of scientific inquiry (Rodgers & Knafl, 2000). Concept analysis is one such form of inquiry. Concept analysis allows for the clarification of words used when nurses communicate (Walker & Avant, 2005). Concept analysis is a vigorous mental exercise with many methods to conduct the analysis. One such method is the Wilson method of concept analysis as adapted by Walker and Avant, which guided this analysis. Walker and Avant (2005, p. 65) propose eight simultaneously occurring steps: 1. Select a concept 2. Determine the aims or purposes of the analysis 3. Identify all uses of the concept that can be discovered 4. Determine the defining attributes 5. Construct a model case 6. Construct contrary, borderline, related, and invented cases 7. Identify antecedents and consequences 8. Define empirical referents The following draws from a more comprehensive concept analysis and presents an abbreviated analysis of the concept of good death. USE OF THE CONCEPT OF GOOD DEATH No standard dictionary definition for good death exists. Many authors use the IOM definition: “A
121
good death is one that is free from avoidable distress and suffering for patients, families and caregivers; in general accord with patients' and families' wishes; and reasonably consistent with clinical, cultural, and ethical standards” (Field & Cassel, 2003, p. 40). Not surprising, other views of good death exist, which authors from many disciplines shared in their writings over the past 15 years. Some articles are of a more philosophical nature whereas others are research oriented.
Philosophical Papers Writers from different disciplines challenged the existence of good death and suggested that cultural ideals of good death could impose behavioral expectations of the dying (Ellison & Fuller, 1998; Hart, Sainsbury, & Short, 1998; Walters, 2004). Scholars in the health sciences discussed the tension between clinical research and optimal endof-life care (Agrawal & Danis, 2002). Clients often seek clinical trials as a last effort to survive. The discussed tension manifests itself in the conflicting roles of the physician scientist to learn about the efficacy of the protocol in which the client enrolls versus providing optimal end-of-life care or a good death for that client (Agrawal & Danis, 2002). Some authors proposed factors that they believe indicate a good death. Gazelle (2003) described personal growth as a hospice medical director and offered the following opinion: “Death is rarely good, but a constellation of factors add up to a better death” (p. 95). Aggressive treatment of signs/symptoms of discomfort, exploring the impact of illness on quality of life of person and family to improve coping, being present through all the patient's and family's experience at the end of life, and assisting with living as well as possible until death without fear of loss of dignity, dying alone, or being in pain were all factors of a “better death” (Gazelle, 2003). Emanuel and Emanuel (1998) proposed a framework for death with six modifiable factors of the patient's experience and five categories of intervention that affects the overall death process. Patient modifiable factors included physical symptoms, psychological and cognitive symptoms, social relationships and support, economic demands and caregiving needs, spiritual and existential belief, and hopes and expectations, whereas interventions fell under the categories of family and friend, social, medical provider, health care institution, and socioeconomic (Emanuel & Emanuel, 1998).
122
Research Perspectives of Good Death Much of the research related to good death explored what people considered a good death. Samples in those studies were diverse and included professionals only, patients only, or mixed groups of patients, professionals, and families. All groups showed great variety of view about good death. Common themes for those asked included the following: comfort/pain and symptom management, the presence of someone, preparation/decision making, dignity/affirmation of whole person, and, surprisingly, not knowing (Hopkinson & Hallett, 2002; Kim & Lee, 2003; Pierson, Curtis, & Patrick, 2002; Steinhauser et al., 2000; Vig, Davenport, & Pearlman, 2002; Vig & Pearlman, 2004). A multidisciplinary focus group of eight hospice workers developed a map of the “final journey of life,” which included resolution of emotional, relationship, and spiritual levels as well as refocusing on living to dying, transcendence, and physical manifestations of the dying process (Forbes & Rosdahl, 2003). Mak and Clinton (1999) reviewed the literature of good death to ascertain if hospice clients achieved an acceptable death. The researchers identified seven elements of a good death: comfort or relief from pain and suffering, opening or being aware of dying, completion or accepting the timing of one's death, control, optimism (keeping hope alive), readiness/preparing for departure, and location/living with one's choice about where to die (Mak & Clinton, 1999). After the conclusion of a large-scale study conducted by the IOM, the editors of the report summary noted that too many dying people suffered needless pain and distress because of the many impediments to appropriate care and gaps in science about end of life (Field & Cassel, 1997). Quantifying Good Death Some researchers sought to measure good death by creating a tool. Ternestedt, Andershed, Eriksson, and Johansson (2002) developed a chart audit tool to analyze whether or not hospice patients experienced a good death according to six “S” criteria: symptom control, social relationships, self-determination, self-image, synthesis (patient sums up life), and surrender. Developers of the Quality of Dying Apgar, adapted from the neonatal APGAR score, included pain, nonpain symptoms, advance care planning, peace/dignity, and duration as the five
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main criteria for a good death in renal patients (Cohen, Poppel, Cohn, & Reiter, 2001). Steinhauser et al. (2002) proposed to measure quality of life at the end of life with the QUAL-E. Researchers at the University of Washington developed and validated the 31-item Quality of Dying and Death Instrument (QODD) for which family members rated (after their loved ones death) the frequency and quality of the following domains: symptom and personal care, preparation for death, moment of death, family, treatment preferences, and whole-person concerns (Curtis et al., 2002; Patrick, Curtis, Engelberg, Nielsen, & McCown, 2000). Refinement of the original QODD resulted in two different adaptations for use in the intensive care unit setting, one with 23 items and the other with 14 items (Hodde, Engelberg, Treece, Steinberg, & Curtis, 2004; Levy et al., 2005; Mularski, Curtis, Osborne, Engelberg, & Ganzini, 2004; Mularski, Heine, Osborne, Ganzini, & Curtis, 2005). KEY ATTRIBUTES OF GOOD DEATH “A good death is hard to define, however, for a good death is as complex as the good life of which it is an extension” (Kahn & Steeves, 2001, p. 811). Identification of the key attributes of good death follows the review and analysis of the literature. Key attributes are the characteristics that occur frequently with review of how the concept is used and thus help to define concepts (Walker & Avant, 2005). Journey, comfort, and loving presence comprised the key attributes of good death. The definition for journey was the internal and external passage from one place or stage to another. The individual experience of satisfaction in the physical, spiritual, social, psychological, and environmental domains described comfort. The definition of loving presence included the following: a being there/being with persons in the past, present, and beyond as well as with a higher power in which the exchange of transforming energy (love) occurs. Once identification of key attributes occurred, the following definition emerged. Good death is the journey one embarks upon at the end of life, which occurs in comfort amid a loving presence. Creation of a model may assist in the understanding of a concept. Therefore, the next step involved creation of a model of good death (see Figure 1). The black spiral with arrows on both ends
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Figure 1.
Model of good death.
illustrates the inward and outward journey of the dying person. Illustration of comfort occurs by use of the oval. Loving presence, the purple field, surrounds the dying person, and the purple bidirectional arrows denote the exchange of love between the dying person and the loving presence. CASES, ANTECEDENTS, CONSEQUENCES, AND EMPIRICAL REFERENTS OF GOOD DEATH The development of cases allows one to see how the concept might appear or not in the real world (Walker & Avant, 2005). Cases include the defining attributes in some manner and provide perfect, incomplete, or opposite examples of the concept that helps one to visualize the concept. The story about the child with anencephaly represents a model case of a good death. Antecedents are events that must precede the occurrence of the concept, and conversely, consequences occur afterward (Walker & Avant, 2005). A few antecedents critical to a good death include the following: one must be alive, have a limited life span, and have a spirit/heart open to give and/or receive love. Consequences of good death include total comfort, peace, closure, serenity, and transcendence for the dying individual. Families of the deceased would also experience closure, sadness, and resolution with less problems of ineffective grief. Empirical referents are real-world phenomena that demonstrate the existence of the concept
(Walker & Avant, 2005). As noted earlier, some researchers are developing tools to measure the occurrence of a good death. However, to see good death, one needs only to visit or care for a dying person. Look at the person's face and body for absence of cues of discomfort such as furrowed brow, muscle tenseness, sweating, or moaning/crying. Examine the words and behavior of the person for verbalizations or manifestations of spiritual, psychological, and physical comfort. Are family and friends about, tending lovingly to the dying person? Has the dying person made plans on how to live the rest of his or her life and plans for death? Are they unafraid? When one is witness to a good death, one knows it. RELEVANCE TO PEDIATRIC NURSES Concepts must exist for purposes other than intellectual exercises but should have some use in the “real” world. Both clinical nursing practice and research use the concept of good death. It does not matter if the patient is a neonate with a life-limiting congenital anomaly, a 16-year-old trauma victim, or a 5-year-old child with cancer. Pediatric nurses always seek to provide peace, pain control, support, and decision making/control for dying children and their families. Are these not elements of a good death? Yet, how many of those nurses call what they do as promoting a good death? For too long, the focus of caregivers and researchers of good death was on adults. The
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expansion of that focus now allows the inclusion of the dying child as evidenced by recent articles in the pediatric literature and initiatives such as CHI and the End of Life Nursing Education Consortium Pediatric Palliative Care program. However, much still needs to be done. Future research specific to the dying child should explore the following: trajectories of the various congenital anomalies and other acute and chronic conditions that shorten a child's life and the outcomes of palliative protocol/care on delivery of care, comfort, and site of care. As for families, nursing needs not only more data on what families define as a good death and their short- and long-term needs to care for their child and cope with the inevitable loss but also to learn which families would benefit from home care versus inpatient care. Siblings, grandparents, and health care professionals, also impacted by a child's death, have needs that needs to be explored.
Removal of barriers to palliative/hospice care for children includes changes in health care policy to include a hospice benefit for children and hospice policies that limit admission to those with a life expectancy of 6 months or less. Some programs that provide comprehensive palliative care for children already exist; however, most operate out of children's hospital in large urban areas. Health care providers and hospices in smaller cities and rural areas need educational assistance and support to care for dying infants. Pediatric nurses in the clinical and research arenas need to work together to develop evidencebased, developmentally appropriate care of the dying child and their families. Having a clear, consistent view of the concept of good death is just one step toward that reality. Dr. Jay Milstein (2003, p. 336) stated it so eloquently when he wrote “It may be painful to accompany a child or sibling on his or her final journey, but the experience has the power to transform lives.”
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