Élie AZOULAY Hôpital Saint-Louis, Service de Réanimation Médicale Université Paris-Diderot, Sorbonne Paris-Cité

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1 Élie AZOULAY Hôpital Saint-Louis, Service de Réanimation Médicale Université Paris-Diderot, Sorbonne Paris-Cité Groupe de Recherche Respiratoire en Réanimation Onco-Hématologique (GRRR-OH)

2 Thank you for the invitation

3 Global Data

4 Withholding and withdrawal of life support from the critically ill Two ICUs, One year (1987 to 1988) Withholding in 22/1719 patients (1%) Withdrawing from 93/1719 patients (5 %). All but 1 died = 45% of all deaths Thirteen (11 percent) had earlier expressed the wish that their terminal care be limited, but this affected care in only four cases. All but 5 of the 115 patients were incompetent. 100% of family participation 10 disagreements between clinicians and the relatives Smedira et al. New England Journal of Medicine 1990

5 The ETHICUS study: EOL practices in 37 ICUs in 17 European countries Sprung et al. JAMA 2003;290:790-7 Europe Unsuccessful CPR WH WD Active shortening of the dying process Northern Europe 154 (10.2%) 575 (38.2%) 714 (47.4) 14 (0.9%) Central Europe 217 (17.9%) 412 (34.1%) 409 (33.8%) 79 (6.5%) Southern Europe 461 (30.1%) 607 (39.6%) 275 (17.9%) 1 (0.1%) Whole Europe 832 (19.6%) 1594 (37.5%) 1398 (32.9%) 94 (2.2%) Hospital mortality 100% 89% 89% 100% Total 832 (19.6%) 1594 (37.5%) 1398 (32.9%) 94 (2.2%)

6 Significant differences across countries regarding: Proportion of EOLD in dying patients Time from admission to EOLD Time from EOLD to discharge or death

7 % of WH/WD in dying patients Involvement of families in discussions and decisions USA >90% 90% Canada 80% 90% Europe (Ethicus) 76% / Israel 91% (no WD) 28% England 85% >90% France 50% 50% Hong Kong 23 to 61% 95% Spain 34% 41% Italy 8% 58%

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9 Detailed Data

10 The number of respondents who favoured radiotherapy went from 18% for those presented with the survival framing to 44% for those presented with the mortality framing.

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12 Family Preferences for ICU Decisions 1% family decides (autonomy) 21% family decides, MD input 39% mutual (shared model) 24% MD decides, family input 15% MD decides (parental) 0 <5% 47% 30% 10-15% Heyland et al, Intensive Care Med 2003 Azoulay et al, Crit Care Med 2004

13 Only 2% (1/51) of decisions met all 10 criteria for shared decision making. The least frequently addressed elements were the family s role in decision making (31%) and an assessment of the family s understanding of the decision (25%).

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15 I am convinced that the variability in the decision-making process is somewhere else Countries/Regions ICUs Patients/ Relatives Clinicians Context

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18 Reactions to bereavement Affective Depression, despair, dejection, distress Anxiety, fear, dread, guilt, Ask self-blame, self-accusation Guilt Anger, hostility, irritability, anhedonia loss of pleasure, loneliness, yearning, longing, pining, shock, numbness Cognitive Ask Guil Guilt Preoccupation with thoughts of deceased, Guilt Intrusive ruminations, sense of presence of deceased Suppression, Ask denial, lowered Guilt self-esteem Self-reproach, helplessness, hopelessness Suicidal ideation, sense of unreality Memory and concentration difficulties Ask Ask Behavioral Agitation, tenseness, Guilt restlessness, fatigue, Overactivity, Searching, weeping, sobbing, crying, social withdrawal, Ask physiological somatic, loss of appetite, sleep disturbances, energy loss, exhaustion Guilt Somatic complaints, physical complaints similar to those in the deceased Ask Immunological and endocrine changes Guilt Susceptibility to illness, disease, mortality Ask

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20 Interventions

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22 Time and logistics physical tasks financial costs emotional burdens mental health risks physical health risks Promoting communication encouraging appropriate advance care planning and decision-making supporting home care demonstrating empathy attending to family grief and bereavement

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24 Lautrette et al. NEJM patients included In 22 ICUs over a 6-month period 4 primary refusal 126 patients randomized 63 Intervention 63 Standard care 56 (88.9%) family interviewed 52 (82.5%) family interviewed PTSD (IES), Anxiety and Depression (HADS)

25 Anxiety and depression Lautrette et al. Famiréa VIII. NEJM 2007

26 PTSD-related symtoms Control Group PTSD IES Control Group Intervention Group PTSD IES Intervention group Lautrette et al. Famiréa VIII. NEJM 2007

27 Cluster-randomized trial randomizing qualityimprovement intervention based on selfefficacy theory to improve ICU end-of-life care. FAMILY QODD Satisfaction with care Satisfaction with DM Intervention Control P Value 61.8 (23.9) 75% 72.4% 59.9 (21.9) 76.3% 75.7% (1) clinician education about palliative care, (2) identification and training of ICU clinician local champions for palliative care, (3) academic detailing of nurse and physician ICU directors, (4) feedback of individual ICU specific quality data including family satisfaction, and (5) implementation of system supports such as palliative care order forms. NURSE QODD ICU days to ventilator withdrawal Avoided CPR in last hour of life 87.1% 89.4% DNR orders at death 82.7% 82.1% 0.68 Pain assesment 79.2% 77.2% 0.81 Life support withheld or withdrawn 72.3% 68.7% 0.10

28 Thinking differently

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31 Definition of high-quality ICU palliative care Communication by clinicians Patient-focused medical decision-making: Clinical care : dignity, treating the patient as a person Protecting privacy Care of the family: Providing access, proximity, and support

32 Framework for clinicians to help surrogates overcome the emotional, cognitive, and moral barriers to high-quality surrogate decision making for incapacitated patients. Answering to What do you think the patient would choose? is emotionally, cognitively, and morally complex. We should stop distributing patient s values expertise to surrogates and technical/medical expertise to physicians. Many surrogates need assistance in identifying and working through the sometimes conflicting values relevant to medical decisions near the end of life.

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34 Open the ICU Doors You have Nothing To Hide You can be Proud of how you Care

35 Happy hours for ICU relatives (Famirea) We ve changed happy hours to an «Interlude for reflection»

36 Thank you for your Attention

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