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)

Thank you for the invitation

Global Data

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

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%)

The ETHICUS study: EOL practices in 37 ICUs in 17 European countries

Sprung et al. JAMA 2003;290:790-7

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

% 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%

Detailed Data

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.

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)

Heyland et al, Intensive Care Med 2003

0

<5%

47%

30%

10-15%

Azoulay et al, Crit Care Med

2004

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%).

Countries/Regions

ICUs

¨Patients/ Relatives

Clinicians

Context

I am convinced that the variability in the decision-making process is somewhere else

Reactions to bereavement Affective

Depression, despair, dejection, distress

Anxiety, fear, dread, guilt, self-blame, self-accusation

Anger, hostility, irritability, anhedonia—loss of pleasure, loneliness, yearning, longing, pining, shock, numbness

Cognitive Preoccupation with thoughts of

deceased,

Intrusive ruminations, sense of presence of deceased

Suppression, denial, lowered self-esteem

Self-reproach, helplessness, hopelessness

Suicidal ideation, sense of unreality

Memory and concentration difficulties

Behavioral Agitation, tenseness,

restlessness, fatigue, Overactivity, Searching, weeping, sobbing, crying, social withdrawal, physiological–somatic, loss of appetite, sleep disturbances, energy loss, exhaustion

Somatic complaints, physical complaints similar to those in the deceased

Immunological and endocrine changes Susceptibility to illness, disease,

mortality

Guil

GuiltGuilt

Guilt

GuiltGuiltGuilt

Guilt

Guil

GuiltGuilt

Guilt

GuiltGuiltGuilt

Guilt

Ask

AskAsk

Ask

AskAskAsk

Ask

Ask

AskAsk

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AskAskAsk

Ask

Interventions

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

PTSD (IES), Anxiety and Depression (HADS)

130 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

Lautrette et al. NEJM 2007

Anxiety and depression

Lautrette et al. Famiréa VIII. NEJM 2007

PTSD-related symtoms

0

10

20

30

40

50

60

70

Control Group Intervention group

Control Group Intervention Group

IES

IES

PTSD

PTSD

Lautrette et al. Famiréa VIII. NEJM 2007

Intervention Control P Value

FAMILY QODD Satisfaction with care Satisfaction with DM

61.8 (23.9) 75% 72.4%

59.9 (21.9) 76.3% 75.7%

0.33 0.63 0.54

NURSE QODD 69 69 0.81

ICU days to ventilator withdrawal 5 7.5 0.81

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

• Cluster-randomized trial randomizing quality-improvement intervention based on self-efficacy theory to improve ICU end-of-life care.

• (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.

Thinking differently

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

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.

Framework for clinicians to help surrogates overcome the

emotional, cognitive, and moral barriers to high-quality

surrogate decision making for incapacitated patients.

Open the

ICU Doors

You have Nothing To Hide

You can be Proud of how you Care

Happy hours for ICU relatives (Famirea)

We’ve

changed

happy hours to

an « Interlude

for reflection »

Thank you for your Attention