Death in the ICU: When Comfort Is Therapeutic* Niranjan Kissoon, MD, FRCP(C), FAAP, FCCM, FACPE Acute and Critical Care-Global Child Health British Columbia Children’s Hospital Department of Pediatrics University of British Columbia Vancouver, BC, Canada Lori d’Agincourt-Canning, MSc, MA, PhD Department of Pediatrics School of Nursing British Columbia Children's Hospital and BC Women’s Health Centre University of British Columbia Vancouver, BC, Canada
Cure sometimes, treat often, comfort always. — Hippocrates xponential growth in knowledge and technological advances in the past few decades have made it possible to support, repair, or replace failed organs and to chal lenge commonly held notions of life and death in the ICU. Now we have a better understanding of neurologic and circu latory sequence of death and an operational definition of death (1,2). However, understanding the physiology of death hardly prepares us to support families and staff during the death of the patient. It informs us about neither the conditions leading to death nor how issues pertaining to the dying process were addressed. Thus, decision making at the end of life is a difficult task for both families and clinicians. How children die and how staff and families interact during the dying process in PICUs are areas worthy of exploration. In this issue of Critical Care Medicine, Burns et al (3) con ducted a prospective cohort study of deaths in five geographi cally distinct tertiary-care teaching hospitals in the United States. They found that although overall death rates had fallen over the past decade to 2.39% (range, 1.85-3.38%), there were little regional differences in the mode of dying. Seventy per cent (n — 133) of patients died following withdrawal or with holding (WD-WH) of life-sustaining therapy, 16% (n = 30) were diagnosed as brain dead, and 14% (n = 26) died follow ing unsuccessful cardiopulmonary resuscitation (CPR). They
E
‘See also p. 2101. Key Words: death and dying; do not resuscitate; end-of-life care; ethics; palliative care The authors have disclosed that they do not have any potential conflicts of interest. Copyright © 2014 by the Society of Critical Care Medicine and Lippincott Williams & Wilkins DOI: 10.1097/CCM.0000000000000538
Critical Care Medicine
also reported that children with new-onset illness or injuries usually died within a week of ICU admission and are likely to die of brain death or failed CPR, whereas those with preex isting diagnoses and who were technology dependent before admission died beyond 1 week after WD-WH of life-sustain ing therapy. This study provides a rough sketch of death in the PICU on which further contributions will weave the tapestry to best serve families during the dying process. For instance, although the units are geographically disparate and have similar staffing mod els (dedicated pediatric critical care staff responsible for decision making), the religious and cultural beliefs of the staff are not the same. Clinicians can have tremendous influence over families, and hence they may determine to a large extent the nature of end-of-life decisions. Regional variation in WH-WD of life sup port between and within countries is common and may be partly because of differences in approaches by clinicians. Generally, 18-65% of PICUs practice WH-WD of life-sustaining therapy or institute do-not-resuscitate (DNR) orders with higher rates (30-70%) in North America and Northern Europe, whereas in eastern central Europe, decisions to forgo life-sustaining therapy are almost nonexistent (4, 5). The extent of family involvement in WD-WH life-sustaining therapy decisions also varies. How ever, in most cases, decisions are made after discussions among medical teams, and families are informed of the decision rather than consulted (4-8). This study was conducted in U.S. centers, but the regional differences mentioned above are im portant because in any unit it is not uncommon to have clinicians and families who have migrated from various countries. Clinicians and fami lies may be of different religious backgrounds and bring their unique philosophy and life experiences likely from their place of birth to end-of-life decisions. In this complex milieu, how do teams accommodate these differences and how do they resolve issues at the end of life? Although issues are usually resolved over time, the mechanism to facilitate resolution is unclear. In view of the fact that WD-WH of life-sustaining therapies is so common, we also need to explore how this is accomplished and the pros and cons of any approach. For instance, what factors dictate how sedatives and neuromus cular blockers are prescribed (6, 9)? When therapy is being withdrawn, is there a preference for immediate withdrawal or terminal weaning of ventilation (10)? Is there any pref erence or order in which positive end-expiratory pressure, mechanical ventilation rate, and supplemental oxygen are withdrawn? How are symptoms, such as perceived pain and distress, managed (11)? Do they use medications (steroids or nebulized adrenalin for postextubation stridor or anti cholinergic agents to reduce the quantity of secretions) to reduce symptoms that may be distressing to families (12)? When should the discussion to WD-WH life support take place? If too early, it has the perceived potential to undermine w w w .c c m jo u r n a l.o r g
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patient or family confidence. This may be particularly true in Asian cultures where discussion of death may be consid ered rude or even dangerous by inducing future “bad luck” (13). On the other hand, early meetings to discuss the goal of care expectations may be of added benefit. Many of the issues outlined above may be of little relevance for the 30% of children who die because of failed CPR and brain death. However, these are im portant questions for the 70% of fami lies of children who die after a deliberate act of WD-WH of life-sustaining therapy. Is the PICU the best location to deliver quality of care at the end of life? Should we integrate palliative-care physicians who may assist in limiting PICU stay and inappropriate use of life-sustaining treatments (14) and ethicists who may assist in resolving conflicts (15)? The issues outlined above beg further exploration and discus sion. In view of the complexity and frequency of WD-WH life-sustaining therapy, this may be an opportune time to develop guidelines addressing these issues. A few ethical issues outlined by Burns et al (3) warrant fur ther clarification. Although withholding and withdrawing are considered to be ethically the same, these decisions are experi enced very differently (psychologically and emotionally) by cli nicians and families, many of whom are psychologically more comfortable with withholding of treatments than with with drawing them (16). Accordingly, communications with fami lies about withdrawal decisions should take these differences into consideration (17). It is also not surprising that DNR decisions were often made in the absence of a formal written DNR order. This may be because physicians adopting more of an informed assent, or informed nondissent, approach to DNR discussions with families. The informed assent approach is strongly endorsed for DNR discussion, especially in the pedi atric situation (18). Burns et al (3) have provided a report that leaves us want ing more and one that has far-reaching implications. For those dying from acute conditions, we need to explore preventative means to decrease injuries and better therapeutic options to resuscitate the brain and heart throughout the continuum of care, as well as issues related to organ donations. We are also left with the task of determining the ideal place for end-of-life care and how best to WD-WH life-sustaining therapy with sensitivity to the wishes of families and support for the staff. When death is imminent, comfort is therapeutic.
2148
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REFERENCES 1. Bernat JL, Capron AM, Bleck TP, et al: The circulatory-respiratory determination of death in organ donation. Crit Care Med 2010; 38:963-970 2. Shemie SD, Hornby L, Baker A, et al; The International Guidelines for Determination of Death phase 1 participants, in collaboration with the World Health Organization: International guideline development for the determination of death. Intensive Care Med 2014; 40:788-797 3. Burns JP, Sellers DE, Meyer EC, et al: Epidemiology of Death in the PICU at Five U.S. Teaching Hospitals. Crit Care Med 2014; 42:2101-2108 4. Devictor DJ, Latour JM; EURYDICE II study group: Forgoing life sup port: How the decision is made in European pediatric intensive care units. Intensive Care Med 2011; 37:1881 -1887 5. Moore P, Kerridge I, Gillis J, et al: Withdrawal and limitation of lifesustaining treatments in a paediatric intensive care unit and review of the literature. J Paediatr Child Health 2008; 44:404-408 6. de Vos MA, van der Heide A, Maurice-Stam H, et al: The process of end-of-life decision-making in pediatrics: A national survey in the Netherlands. Pediatrics 2011; 127:e1004-e1012 7. Lago PM, Piva J, Garcia PC, et al; Brazilian Pediatric Center of Studies on Ethics: End-of-life practices in seven Brazilian pediatric intensive care units. Pediatr Crit Care Med 2008; 9:26-31 8. Althabe M, Cardigni G, Vassallo JC, et al: Dying in the intensive care unit: Collaborative multicenter study about forgoing life-sustaining treatment in Argentine pediatric intensive care units. Pediatr Crit Care Med 2 0 03;4:164-169 9. Burns JP, Mitchell C, Outwater KM, et al: End-of-life care in the pedi atric intensive care unit after the forgoing of life-sustaining treatment. Crit Care Med 2000; 28:3060-3066 10. Szalados JE: Discontinuation of mechanical ventilation at end-of-life: The ethical and legal boundaries of physician conduct in termination of life support. Crit Care Clin 2007; 23:317-337, xi 11. Montagnini ML, Moat ME: Non-pain symptom management in pallia tive care. Clin Fam Pract 2004; 6:395-422 12. Kompanje EJ, van der Hoven B, Bakker J: Anticipation of distress after discontinuation of mechanical ventilation in the ICU at the end of life. Intensive Care Med 2008; 34:1593-1599 13. Ip M, Gilligan T, Koenig B, et al: Ethical decision-making in critical care in Hong Kong. Crit Care Med 1998; 26:447-451 14. Aslakson R, Cheng J, Vollenweider D, et al: Evidence-based palliative care in the intensive care unit: A systematic review of interventions. J Palliat Med 2014; 17:219-235 15. Schneiderman LJ: Effect of ethics consultations in the intensive care unit. Crit Care Med 2006; 34(11 Suppl):S359-S363 16. Truog RD, Campbell ML, Curtis JR, et al; American Academy of Critical Care Medicine: Recommendations for end-of-life care in the intensive care unit: A consensus statement by the American College [corrected] of Critical Care Medicine. Crit Care Med 2008; 36:953-963 17. Curtis JR: The use of informed assent in withholding cardiopulmonary resuscitation in the ICU. Virtual Mentor 2012; 14:545-550 18. Clark JD, Dudzinski DM: The culture of dysthanasia: Attempting CPR in terminally ill children. Pediatrics 2013; 131:572-580
September 2014 • Volume 42 • Number 9
Copyright of Critical Care Medicine is the property of Lippincott Williams & Wilkins and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use.
Cure sometimes, treat often, comfort always. — Hippocrates xponential growth in knowledge and technological advances in the past few decades have made it possible to support, repair, or replace failed organs and to chal lenge commonly held notions of life and death in the ICU. Now we have a better understanding of neurologic and circu latory sequence of death and an operational definition of death (1,2). However, understanding the physiology of death hardly prepares us to support families and staff during the death of the patient. It informs us about neither the conditions leading to death nor how issues pertaining to the dying process were addressed. Thus, decision making at the end of life is a difficult task for both families and clinicians. How children die and how staff and families interact during the dying process in PICUs are areas worthy of exploration. In this issue of Critical Care Medicine, Burns et al (3) con ducted a prospective cohort study of deaths in five geographi cally distinct tertiary-care teaching hospitals in the United States. They found that although overall death rates had fallen over the past decade to 2.39% (range, 1.85-3.38%), there were little regional differences in the mode of dying. Seventy per cent (n — 133) of patients died following withdrawal or with holding (WD-WH) of life-sustaining therapy, 16% (n = 30) were diagnosed as brain dead, and 14% (n = 26) died follow ing unsuccessful cardiopulmonary resuscitation (CPR). They
E
‘See also p. 2101. Key Words: death and dying; do not resuscitate; end-of-life care; ethics; palliative care The authors have disclosed that they do not have any potential conflicts of interest. Copyright © 2014 by the Society of Critical Care Medicine and Lippincott Williams & Wilkins DOI: 10.1097/CCM.0000000000000538
Critical Care Medicine
also reported that children with new-onset illness or injuries usually died within a week of ICU admission and are likely to die of brain death or failed CPR, whereas those with preex isting diagnoses and who were technology dependent before admission died beyond 1 week after WD-WH of life-sustain ing therapy. This study provides a rough sketch of death in the PICU on which further contributions will weave the tapestry to best serve families during the dying process. For instance, although the units are geographically disparate and have similar staffing mod els (dedicated pediatric critical care staff responsible for decision making), the religious and cultural beliefs of the staff are not the same. Clinicians can have tremendous influence over families, and hence they may determine to a large extent the nature of end-of-life decisions. Regional variation in WH-WD of life sup port between and within countries is common and may be partly because of differences in approaches by clinicians. Generally, 18-65% of PICUs practice WH-WD of life-sustaining therapy or institute do-not-resuscitate (DNR) orders with higher rates (30-70%) in North America and Northern Europe, whereas in eastern central Europe, decisions to forgo life-sustaining therapy are almost nonexistent (4, 5). The extent of family involvement in WD-WH life-sustaining therapy decisions also varies. How ever, in most cases, decisions are made after discussions among medical teams, and families are informed of the decision rather than consulted (4-8). This study was conducted in U.S. centers, but the regional differences mentioned above are im portant because in any unit it is not uncommon to have clinicians and families who have migrated from various countries. Clinicians and fami lies may be of different religious backgrounds and bring their unique philosophy and life experiences likely from their place of birth to end-of-life decisions. In this complex milieu, how do teams accommodate these differences and how do they resolve issues at the end of life? Although issues are usually resolved over time, the mechanism to facilitate resolution is unclear. In view of the fact that WD-WH of life-sustaining therapies is so common, we also need to explore how this is accomplished and the pros and cons of any approach. For instance, what factors dictate how sedatives and neuromus cular blockers are prescribed (6, 9)? When therapy is being withdrawn, is there a preference for immediate withdrawal or terminal weaning of ventilation (10)? Is there any pref erence or order in which positive end-expiratory pressure, mechanical ventilation rate, and supplemental oxygen are withdrawn? How are symptoms, such as perceived pain and distress, managed (11)? Do they use medications (steroids or nebulized adrenalin for postextubation stridor or anti cholinergic agents to reduce the quantity of secretions) to reduce symptoms that may be distressing to families (12)? When should the discussion to WD-WH life support take place? If too early, it has the perceived potential to undermine w w w .c c m jo u r n a l.o r g
2147
Editorials
patient or family confidence. This may be particularly true in Asian cultures where discussion of death may be consid ered rude or even dangerous by inducing future “bad luck” (13). On the other hand, early meetings to discuss the goal of care expectations may be of added benefit. Many of the issues outlined above may be of little relevance for the 30% of children who die because of failed CPR and brain death. However, these are im portant questions for the 70% of fami lies of children who die after a deliberate act of WD-WH of life-sustaining therapy. Is the PICU the best location to deliver quality of care at the end of life? Should we integrate palliative-care physicians who may assist in limiting PICU stay and inappropriate use of life-sustaining treatments (14) and ethicists who may assist in resolving conflicts (15)? The issues outlined above beg further exploration and discus sion. In view of the complexity and frequency of WD-WH life-sustaining therapy, this may be an opportune time to develop guidelines addressing these issues. A few ethical issues outlined by Burns et al (3) warrant fur ther clarification. Although withholding and withdrawing are considered to be ethically the same, these decisions are experi enced very differently (psychologically and emotionally) by cli nicians and families, many of whom are psychologically more comfortable with withholding of treatments than with with drawing them (16). Accordingly, communications with fami lies about withdrawal decisions should take these differences into consideration (17). It is also not surprising that DNR decisions were often made in the absence of a formal written DNR order. This may be because physicians adopting more of an informed assent, or informed nondissent, approach to DNR discussions with families. The informed assent approach is strongly endorsed for DNR discussion, especially in the pedi atric situation (18). Burns et al (3) have provided a report that leaves us want ing more and one that has far-reaching implications. For those dying from acute conditions, we need to explore preventative means to decrease injuries and better therapeutic options to resuscitate the brain and heart throughout the continuum of care, as well as issues related to organ donations. We are also left with the task of determining the ideal place for end-of-life care and how best to WD-WH life-sustaining therapy with sensitivity to the wishes of families and support for the staff. When death is imminent, comfort is therapeutic.
2148
w w w .c c m jo u rn a l.o rg
REFERENCES 1. Bernat JL, Capron AM, Bleck TP, et al: The circulatory-respiratory determination of death in organ donation. Crit Care Med 2010; 38:963-970 2. Shemie SD, Hornby L, Baker A, et al; The International Guidelines for Determination of Death phase 1 participants, in collaboration with the World Health Organization: International guideline development for the determination of death. Intensive Care Med 2014; 40:788-797 3. Burns JP, Sellers DE, Meyer EC, et al: Epidemiology of Death in the PICU at Five U.S. Teaching Hospitals. Crit Care Med 2014; 42:2101-2108 4. Devictor DJ, Latour JM; EURYDICE II study group: Forgoing life sup port: How the decision is made in European pediatric intensive care units. Intensive Care Med 2011; 37:1881 -1887 5. Moore P, Kerridge I, Gillis J, et al: Withdrawal and limitation of lifesustaining treatments in a paediatric intensive care unit and review of the literature. J Paediatr Child Health 2008; 44:404-408 6. de Vos MA, van der Heide A, Maurice-Stam H, et al: The process of end-of-life decision-making in pediatrics: A national survey in the Netherlands. Pediatrics 2011; 127:e1004-e1012 7. Lago PM, Piva J, Garcia PC, et al; Brazilian Pediatric Center of Studies on Ethics: End-of-life practices in seven Brazilian pediatric intensive care units. Pediatr Crit Care Med 2008; 9:26-31 8. Althabe M, Cardigni G, Vassallo JC, et al: Dying in the intensive care unit: Collaborative multicenter study about forgoing life-sustaining treatment in Argentine pediatric intensive care units. Pediatr Crit Care Med 2 0 03;4:164-169 9. Burns JP, Mitchell C, Outwater KM, et al: End-of-life care in the pedi atric intensive care unit after the forgoing of life-sustaining treatment. Crit Care Med 2000; 28:3060-3066 10. Szalados JE: Discontinuation of mechanical ventilation at end-of-life: The ethical and legal boundaries of physician conduct in termination of life support. Crit Care Clin 2007; 23:317-337, xi 11. Montagnini ML, Moat ME: Non-pain symptom management in pallia tive care. Clin Fam Pract 2004; 6:395-422 12. Kompanje EJ, van der Hoven B, Bakker J: Anticipation of distress after discontinuation of mechanical ventilation in the ICU at the end of life. Intensive Care Med 2008; 34:1593-1599 13. Ip M, Gilligan T, Koenig B, et al: Ethical decision-making in critical care in Hong Kong. Crit Care Med 1998; 26:447-451 14. Aslakson R, Cheng J, Vollenweider D, et al: Evidence-based palliative care in the intensive care unit: A systematic review of interventions. J Palliat Med 2014; 17:219-235 15. Schneiderman LJ: Effect of ethics consultations in the intensive care unit. Crit Care Med 2006; 34(11 Suppl):S359-S363 16. Truog RD, Campbell ML, Curtis JR, et al; American Academy of Critical Care Medicine: Recommendations for end-of-life care in the intensive care unit: A consensus statement by the American College [corrected] of Critical Care Medicine. Crit Care Med 2008; 36:953-963 17. Curtis JR: The use of informed assent in withholding cardiopulmonary resuscitation in the ICU. Virtual Mentor 2012; 14:545-550 18. Clark JD, Dudzinski DM: The culture of dysthanasia: Attempting CPR in terminally ill children. Pediatrics 2013; 131:572-580
September 2014 • Volume 42 • Number 9
Copyright of Critical Care Medicine is the property of Lippincott Williams & Wilkins and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use.
