JOURNAL OF PALLIATIVE MEDICINE Volume 18, Number 2, 2015 ª Mary Ann Liebert, Inc. DOI: 10.1089/jpm.2015.0009
Notes from the Editor
From Goals of Care to Improved Family Outcomes in the NICU: Determining the Intervention Christopher Collura, MD and Joanne Wolfe, MD, MPH, Associate Editor
P
arents of critically ill infants often face intense psychosocial challenges in the neonatal intensive care unit (NICU) that can lead to strong emotional responses.1,2 The NICU experience can have untoward effects on mothers and fathers rooted in a marginalized role in protecting their babies.3 Many parents report feelings of helplessness and separation from their child during this critical course. Perceiving their infant in pain or observing their child’s fear and weakness have been described as key stressors.4,5 The events in the NICU, and especially experiencing the death of an infant in the hospital, can lead to posttraumatic stress disorder (PTSD) and poor health outcomes for parents.6,7 Unsatisfactory communication has been associated with increased rates of PTSD in family members of patients in the intensive care unit (ICU).8 Research has found that impaired communication can lead to increased stress for parents of infants in the NICU as well.9,10 Neonatal providers espouse a professional duty to provide open and honest information to facilitate parental decision making.11 In addition, they must be skilled in recognizing a family’s sociocultural and religious perspectives.12 This family-centered imperative directs relationship building and should prompt providers to partner with parents in establishing goals of care that represent the baby’s best interests and reflect the values of the family. In this issue of the Journal of Palliative Medicine, ClarkePounder, et al. describe important methods in capturing the content of provider communication with families in the NICU.13 Their research provides a vital proof of concept that neonatal providers and parents are willing to record bedside communication for the purpose of improvement. The work impressively captured the diminutive time parents’ voices are active in bedside rounds as well as the paucity of attention paid to psychosocial concerns. Albeit a single-center, small pilot study, these results alone may prove invaluable in contributing to a root-cause analysis for poor communication in the NICU. These data should inspire broader investigation to inform how unsatisfactory communication may influence stress, anxiety, and long-term mental and physical outcomes for parents. The lack of attention to psychosocial concerns and limiting a parent’s contributions to daily rounds runs counter to research describing predictors of family satisfaction. ICU care is more valued if spiritual needs of the family are optimized.14 Parents value religion and hope over medical talk in decisions regarding neonatal resuscitation.15 Families ex-
press significantly increased satisfaction with provider communication as well as decreased physician conflict when they participate in a greater amount of the medical decision making conversation in the ICU.16 Clarke-Pounder, et al. report findings that fail to prove the hypothesis that sharing family values and preferences with providers would increase dialogue about family concerns in the NICU. However, interpretation of this work should not go as far as to accept the null hypothesis. The authors discuss that by involving the family in a decision making tool, expectations may be recalibrated. Families in the intervention group expressed lower measures of satisfaction. The recalibration may have raised expectations, but the question remains whether bedside rounds are suitable for meaningful conversations meant to explore parental values. Establishing daily care plans for critically ill neonates involves reviewing clinical input and titrating intensive measures of treatment through multidisciplinary coordination. Medical speak and compromised parental input may be unavoidable during daily work rounds in the demanding NICU setting. Perhaps the family-centered objective of bedside rounds needs to be recalibrated. It could be unrealistic to expect effective parent-centered integration in this granular data-driven process. Measuring family-centered communication during rounds may not be the outcome of interest. This research incites further questions like whether satisfaction trends among families in the NICU would improve if they were provided a physical space separate from the cognitive and visceral bedside experience to personally explore goals of care with their baby’s providers? Would additional beside visits by neonatologists or interdisciplinary providers to review care plans and integrate goals improve the psychosocial care of families? Translating a decision making tool into improved family satisfaction may also be disproportionate to provider training. Physicians regularly dominate interactions with families, but maybe more concerning are the missed opportunities to identify, listen, and recognize emotional cues that inform value-driven preferences.17 Skills in advanced communication can modulate dissatisfaction and, more importantly, lessen psychological distress in the ICU.18 It remains unclear whether current simulation models of advanced communication training transfer to the bedside and impact quality of communication.19 Further unclear is whether physicians’ ability to build family-centered partnerships 1
2
through improved communication can lessen the stress the ICU can impart on parents and families. The next step in a family-centered intervention may be equipping providers with such enhanced communication skills coupled with aims to address what setting best allows them to attend to parental goals and values. Palliative care must embrace its call to disseminate such skills training across all specialties, including neonatology. This training should focus on how to develop goals of care and seek family values in shared decision making. More importantly, it should enhance expertise in interpreting diverse parental preferences and how they should inform provider recommendations. Research might then focus on whether these skills can improve satisfaction and lessen adverse psychosocial consequences for parents navigating intense clinical settings like the NICU. References
1. Miles MS, Holditch-Davis D: Parenting the prematurely born child: Pathways of influence. Semin Perinatol 1997;21:254–266. 2. Joseph RA, Mackley AB, Davis CG, et al.: Stress in fathers of surgical neonatal intensive care unit babies. Adv Neonatal Care 2007;7:321–325. 3. Miles MS, Funk SG, Carlson J: Parental stressor scale: Neonatal intensive care unit. Nurs Res 1993;42:148–152. 4. Miles MS: Parents of critically ill premature infants: Sources of stress. Critic Care Quart 1989;12:69–74. 5. Miles MS, Funk SG, Kasper MA: The neonatal intensive care unit environment: Sources of stress for parents. AACN Clin Iss Crit Care Nurs 1991;2:346–354. 6. Aftyka A, Rybojad B, Rozalska-Walaszek I, et al.: Posttraumatic stress disorder in parents of children hospitalized in the neonatal intensive care unit (NICU): Medical and demographic risk factors. Psychiatr Danub 2014;26:347– 352. 7. Youngblut JM, Brooten D, Cantwell GP, et al.: Parent health and functioning 13 months after infant or child NICU/PICU death. Pediatrics 2013;132:e1295–e1301. 8. Azoulay E, Pochard F, Kentish-Barnes N, et al.: Risk of post-traumatic stress symptoms in family members of intensive care unit patients. Am J Respir Crit Care Med 2005;171:987–994.
NOTES FROM THE EDITOR
9. Werceszczak JK, Miles MS, Holditch-Davis D: Maternal recall of the neonatal intensive care. Neonat Networks 1997;16:1–8. 10. Van Riper M: Family-provider relationships and well-being in families with preterm infants in the NICU. Heart Lung 2001;30:74–84. 11. Harrison H: The principles for family-centered neonatal care. Pediatrics 1993;92:643–650. 12. American Academy of Pediatrics Committee on Bioethics: Ethics and the care of critically ill infants and children. Pediatrics 1996;98:149–152. 13. Clarke-Pounder JP, Boss RD, Roter DL, et al.: Communication intervention in the neonatal intensive care unit: Can it backfire? J Palliat Med 2014;17:1–5. 14. Wall RJ, Engelberg RA, Gries CJ, et al.: Spiritual care of families in the intensive care unit. Crit Care Med 2007;35: 1084–1090. 15. Boss RD, Hutton N, Sulpar LJ, et al.: Values parents apply to decision-making regarding delivery room resuscitation for high-risk newborns. Pediatrics 2008;122:583–589. 16. McDonagh JR, Elliott TB, Engelberg RA, et al.: Family satisfaction with family conference about end-of-life care in the ICU: Increased proportion of family speech is associated with increased satisfaction. Crit Care Med 2004; 32:1484–1488. 17. Selph RB, Shiang J, Engelberg R, et al.: Empathy and life support decision in intensive care units. J Gen Intern Med 2008;23:1311–1317. 18. Truog RD, Campbell ML, Curtis JR, et al.: Recommendations for end-of-life in the intensive care unit: A consensus statement by the American College of Critical Care Medicine. Crit Care Med 2008;36:953–963. 19. Curtis JR, Back AL, Ford DW, et al.: Effect of communication skills training for residents and nurse practitioners on quality of communication with patients with serious illness: A Randomized Trial. JAMA 2013;310:2271–2281.
Address correspondence to: Christopher Collura, MD Mayo Clinic Children’s Center 200 First Street SW Rochester, MN 55905 E-mail: [email protected]
Notes from the Editor
From Goals of Care to Improved Family Outcomes in the NICU: Determining the Intervention Christopher Collura, MD and Joanne Wolfe, MD, MPH, Associate Editor
P
arents of critically ill infants often face intense psychosocial challenges in the neonatal intensive care unit (NICU) that can lead to strong emotional responses.1,2 The NICU experience can have untoward effects on mothers and fathers rooted in a marginalized role in protecting their babies.3 Many parents report feelings of helplessness and separation from their child during this critical course. Perceiving their infant in pain or observing their child’s fear and weakness have been described as key stressors.4,5 The events in the NICU, and especially experiencing the death of an infant in the hospital, can lead to posttraumatic stress disorder (PTSD) and poor health outcomes for parents.6,7 Unsatisfactory communication has been associated with increased rates of PTSD in family members of patients in the intensive care unit (ICU).8 Research has found that impaired communication can lead to increased stress for parents of infants in the NICU as well.9,10 Neonatal providers espouse a professional duty to provide open and honest information to facilitate parental decision making.11 In addition, they must be skilled in recognizing a family’s sociocultural and religious perspectives.12 This family-centered imperative directs relationship building and should prompt providers to partner with parents in establishing goals of care that represent the baby’s best interests and reflect the values of the family. In this issue of the Journal of Palliative Medicine, ClarkePounder, et al. describe important methods in capturing the content of provider communication with families in the NICU.13 Their research provides a vital proof of concept that neonatal providers and parents are willing to record bedside communication for the purpose of improvement. The work impressively captured the diminutive time parents’ voices are active in bedside rounds as well as the paucity of attention paid to psychosocial concerns. Albeit a single-center, small pilot study, these results alone may prove invaluable in contributing to a root-cause analysis for poor communication in the NICU. These data should inspire broader investigation to inform how unsatisfactory communication may influence stress, anxiety, and long-term mental and physical outcomes for parents. The lack of attention to psychosocial concerns and limiting a parent’s contributions to daily rounds runs counter to research describing predictors of family satisfaction. ICU care is more valued if spiritual needs of the family are optimized.14 Parents value religion and hope over medical talk in decisions regarding neonatal resuscitation.15 Families ex-
press significantly increased satisfaction with provider communication as well as decreased physician conflict when they participate in a greater amount of the medical decision making conversation in the ICU.16 Clarke-Pounder, et al. report findings that fail to prove the hypothesis that sharing family values and preferences with providers would increase dialogue about family concerns in the NICU. However, interpretation of this work should not go as far as to accept the null hypothesis. The authors discuss that by involving the family in a decision making tool, expectations may be recalibrated. Families in the intervention group expressed lower measures of satisfaction. The recalibration may have raised expectations, but the question remains whether bedside rounds are suitable for meaningful conversations meant to explore parental values. Establishing daily care plans for critically ill neonates involves reviewing clinical input and titrating intensive measures of treatment through multidisciplinary coordination. Medical speak and compromised parental input may be unavoidable during daily work rounds in the demanding NICU setting. Perhaps the family-centered objective of bedside rounds needs to be recalibrated. It could be unrealistic to expect effective parent-centered integration in this granular data-driven process. Measuring family-centered communication during rounds may not be the outcome of interest. This research incites further questions like whether satisfaction trends among families in the NICU would improve if they were provided a physical space separate from the cognitive and visceral bedside experience to personally explore goals of care with their baby’s providers? Would additional beside visits by neonatologists or interdisciplinary providers to review care plans and integrate goals improve the psychosocial care of families? Translating a decision making tool into improved family satisfaction may also be disproportionate to provider training. Physicians regularly dominate interactions with families, but maybe more concerning are the missed opportunities to identify, listen, and recognize emotional cues that inform value-driven preferences.17 Skills in advanced communication can modulate dissatisfaction and, more importantly, lessen psychological distress in the ICU.18 It remains unclear whether current simulation models of advanced communication training transfer to the bedside and impact quality of communication.19 Further unclear is whether physicians’ ability to build family-centered partnerships 1
2
through improved communication can lessen the stress the ICU can impart on parents and families. The next step in a family-centered intervention may be equipping providers with such enhanced communication skills coupled with aims to address what setting best allows them to attend to parental goals and values. Palliative care must embrace its call to disseminate such skills training across all specialties, including neonatology. This training should focus on how to develop goals of care and seek family values in shared decision making. More importantly, it should enhance expertise in interpreting diverse parental preferences and how they should inform provider recommendations. Research might then focus on whether these skills can improve satisfaction and lessen adverse psychosocial consequences for parents navigating intense clinical settings like the NICU. References
1. Miles MS, Holditch-Davis D: Parenting the prematurely born child: Pathways of influence. Semin Perinatol 1997;21:254–266. 2. Joseph RA, Mackley AB, Davis CG, et al.: Stress in fathers of surgical neonatal intensive care unit babies. Adv Neonatal Care 2007;7:321–325. 3. Miles MS, Funk SG, Carlson J: Parental stressor scale: Neonatal intensive care unit. Nurs Res 1993;42:148–152. 4. Miles MS: Parents of critically ill premature infants: Sources of stress. Critic Care Quart 1989;12:69–74. 5. Miles MS, Funk SG, Kasper MA: The neonatal intensive care unit environment: Sources of stress for parents. AACN Clin Iss Crit Care Nurs 1991;2:346–354. 6. Aftyka A, Rybojad B, Rozalska-Walaszek I, et al.: Posttraumatic stress disorder in parents of children hospitalized in the neonatal intensive care unit (NICU): Medical and demographic risk factors. Psychiatr Danub 2014;26:347– 352. 7. Youngblut JM, Brooten D, Cantwell GP, et al.: Parent health and functioning 13 months after infant or child NICU/PICU death. Pediatrics 2013;132:e1295–e1301. 8. Azoulay E, Pochard F, Kentish-Barnes N, et al.: Risk of post-traumatic stress symptoms in family members of intensive care unit patients. Am J Respir Crit Care Med 2005;171:987–994.
NOTES FROM THE EDITOR
9. Werceszczak JK, Miles MS, Holditch-Davis D: Maternal recall of the neonatal intensive care. Neonat Networks 1997;16:1–8. 10. Van Riper M: Family-provider relationships and well-being in families with preterm infants in the NICU. Heart Lung 2001;30:74–84. 11. Harrison H: The principles for family-centered neonatal care. Pediatrics 1993;92:643–650. 12. American Academy of Pediatrics Committee on Bioethics: Ethics and the care of critically ill infants and children. Pediatrics 1996;98:149–152. 13. Clarke-Pounder JP, Boss RD, Roter DL, et al.: Communication intervention in the neonatal intensive care unit: Can it backfire? J Palliat Med 2014;17:1–5. 14. Wall RJ, Engelberg RA, Gries CJ, et al.: Spiritual care of families in the intensive care unit. Crit Care Med 2007;35: 1084–1090. 15. Boss RD, Hutton N, Sulpar LJ, et al.: Values parents apply to decision-making regarding delivery room resuscitation for high-risk newborns. Pediatrics 2008;122:583–589. 16. McDonagh JR, Elliott TB, Engelberg RA, et al.: Family satisfaction with family conference about end-of-life care in the ICU: Increased proportion of family speech is associated with increased satisfaction. Crit Care Med 2004; 32:1484–1488. 17. Selph RB, Shiang J, Engelberg R, et al.: Empathy and life support decision in intensive care units. J Gen Intern Med 2008;23:1311–1317. 18. Truog RD, Campbell ML, Curtis JR, et al.: Recommendations for end-of-life in the intensive care unit: A consensus statement by the American College of Critical Care Medicine. Crit Care Med 2008;36:953–963. 19. Curtis JR, Back AL, Ford DW, et al.: Effect of communication skills training for residents and nurse practitioners on quality of communication with patients with serious illness: A Randomized Trial. JAMA 2013;310:2271–2281.
Address correspondence to: Christopher Collura, MD Mayo Clinic Children’s Center 200 First Street SW Rochester, MN 55905 E-mail: [email protected]
