STEFANO NAVAPneumologia e Terapia Intensiva RespiratoriaOspedale Sant’Orsola MalpighiBOLOGNA

Ethics and end-of-life issue in RICU A European perspective

ANTALYA 5/4/2032

“ I just want to give a meaning to a situation that has no meaning“

(Vasco Rossi)

The facts

•More and more patients are placed on mechanical ventilation (MV)•Who is going to decide when and why: - the time is come to suspend MV - someone does NOT “merit” MV - who is involved in the decision

Publications on End-of-Life issues

0

20

40

60

80

100

120

80-90

90-00

00-08

n. publications

YEARS

“I am not afraid to die. I just don't want to be there when it happens ”Woody Allen

INTRODUCTION

• In most Western countries, about 1% of the population dies every year

• Advances in medicine have greatly improved possibilities to treat seriuosly ill chronic patients and to prolong life

• There is increasing recognition that extension of life might not always be an appropriate goal of medicine

• Medical end-of-life decisions can take place in any setting at which patients die, that is in hospital, nursing homes, hospices and at home

(World Health Organization 2002)

death

• Correct Information

• Symptoms control

• Mobility

• Relief of burden

4 items were identified :

Communications

Do WE KNOW HOW TO SPEAK WITH RELATIVES ?

0

1 0

2 0

3 0

4 0

5 0

6 0

7 0

8 0

p h y s c i a n s p e a k

f a m i l y s a t i s f a c t i o n

%

J.Gen.Intern.Med. 1995;10:436

Do WE KNOW HOW TO SPEAK WITH RELATIVES ?

0

1 0

2 0

3 0

4 0

5 0

6 0

7 0

8 0

9 0

p h y s c i a n s p e a k

f a m i l y s a t i s f a c t i o n

%

Overall >50% of speak

J.Gen.Intern.Med. 1995;10:436

Do WE KNOW HOW TO SPEAK WITH RELATIVES ?

0

1 0

2 0

3 0

4 0

5 0

6 0

7 0

8 0

9 0

p h y s c i a n s p e a k

f a m i l y s a t i s f a c t i o n

%

Overall >50% of <50% of speak speak

J.Gen.Intern.Med. 1995;10:436

“And we [family members] had another concern my mother specifically wanted to mention, the way they would talk about these issues [DNR decision] within hearing range of my father. And we felt like he could hear, even if he could not respond, and it might hurt his chances for recovery to hear us talking about him. My mother would have to motion to go into the hall.”

42% were considered COMPETENTTotalNorth EUSouth EU

Symptoms control

0

10

20

30

40

50

Resp. D. Heart D. Pain D. Anx D. Sedatives morphine other

Drugs used in the last month of life

% of patients

Only about 50% of patients achieved control of symptoms

Family’s burden

0

1 0

2 0

3 0

4 0

5 0

h o m e G e n D e p . R e s pD e p .

IC U R e h . D e p . N H

Where do the end-stage respiratory patients die ?

0

1 0

2 0

3 0

4 0

5 0

6 0

F a mily F a m+p ub .

S e r v ic e

Pr iva t e

A s s is t a nc e

ot h e r

Family’s burden

Decisions

DEFINITIONS

• Withholding : a planned decision not to institute therapies that were otherwise warranted (i.e. intubation, renal replacement therapy, increased doses of vasopressor infusions, surgery, transfusion, nutrition, hydration).

• Withdrawal: discontinuation of treatments that had been started (i.e decreasing FiO2 21%, extubation, turning off the ventilator, suspend the vasopressors….)

• Euthanasia : from eu and anatos = good death. A doctor intentionally killing a person who is suffereing unbearably and hopelessly at the latter’s voluntary, explicit, repeated, well-considered and informed request

WHO is THE CANDIDATE for end-of-life decision ?

Decision to withhold or withdraw life-sustaining treatment are often hindered by prognostic uncertainly, since it is usually difficult to identify at an early stage, and without resonable doubt those patients who will inevetably die.

Typically the prognosis only becomes obvious late in the evolution of the acute or chronic illness.

Unfortunately the available severity scoring systems do not predict outcome in individual patients with sufficient accuracy to be useful in end-of-life decision making.

BMJ 2000

20% of predictions were accurate63% were overoptimistic17% overpessimistic.

Preferences

Outcome clinicoCarico assistenziale

Acuto (i.e. ETI)

N Engl J Med 1996; 334:1578-82

“Real” < 50%

0102030405060708090

100

does not exactly know thedisease

never discussed E-o-L issues

Carlucci et al

n.

Anticipatory planning in severe COPDCarlucci et al.

0

10

20

30

40

50

60

70

80

90

100

Decisions

ETI

O2 andmorphineceling NIV

Carlucci et al

n.

Anticipatory planning in severe COPDCarlucci et al.

NIV users

NIV non-users

0

2

4

6

8

10

12

14

16

18

decision

refused

accept

Carlucci et al

% p

atie

nts

“I trust everything the physicians say”“I do not feel like talking about these issues”

Anticipatory planning in severe COPDCarlucci et al.

20%

NIV as a ceiling treatment:UNIQUE feature of the

pulmonologists ?

The problem of the “pain of breathing” (i.e. dyspnea) in

terminally ill patients

A systematic review of oxygen and airflow effect on relief of dyspnea at rest in patients

with advanced disease of any cause

Gallagher & Roberts J Pain Palliat Care Pharmacother. 2004;18(4):3-15.

This systematic review found low-grade scientific

evidence that oxygen improve dyspnea at rest in some

patients with advanced disease. However, there is no

evidence to identify which patients will benefit from

supplemental oxygen.

*

TotalNorth EUSouth EU

44% of the patients survived the episode of ARF

surviveddied

DYSPNEA INDEX

0

1

2

3

4

5

6

7

8

9

10

ADMISSION NIV 1 hr

*

Observational trial 23 patients with solid malignancies

Practicalities: the dying patient receiving MV

including NIV• Opiates• Anticholinergic patches• Physio, cough adjuncts• Adjustment of ventilator settings• Consider removing MV when

patient comatose, replace with O2 via nasal cannulae to prevent terminal hypoxic fits

• Opiates• Anticholinergic patches• Physio, cough adjuncts• Adjustment of ventilator settings• Consider removing MV when

patient comatose, replace with O2 via nasal cannulae to prevent terminal hypoxic fits

General Principles

• Treat the treatable: exacerbations, CCF, PE etc.

• Explore advance directives: involve family and care team – this is just part of a management plan

• Continued and intensive efforts to palliate symptoms

• Recognise the inevitable• Facilitate care in accordance with patient’s

wishes where possible

• Treat the treatable: exacerbations, CCF, PE etc.

• Explore advance directives: involve family and care team – this is just part of a management plan

• Continued and intensive efforts to palliate symptoms

• Recognise the inevitable• Facilitate care in accordance with patient’s

wishes where possible

ConclusionsWhen is “getting dark, too dark to see”: TALK with your patients and relatives with THEIR languages and LISTEN because we have one mouth and two ears CONSIDER their preferences (i.e. control the symptoms, use drugs and/or NIV, organize a home care program to relief their burden) IMAGINE TOGETHER their future and TAKE in ADVANCE the right decision about End-of-Life Do not unduly PROLONG life and suffering

TALK and LISTEN Hable con ella (Pedro Almodovar)

CONSIDER THE PATIENT’S NEEDS Through a glass darkly (Ingmar Bergman)

TAKE TOGETHER the DECISION Mar adentro (Alejandro Amenábar)

DO NOT PROLONG SUFFERINGLes invasions barbares (Denys Arcand)

Le scaphandre et le papillon (Julian

Schnabel)

Johnny got his gun (Dalton Trumbo)

Million dollars baby (Clint Eastwood)

“Today medicine can and must relief my pain.If this will not happen, I will kill myself, but this shouldnot be considered suicide but failure in duty of care ”

Prof. Sandro Bartoccioni, Cardiochirurgo

Cittta’ di Castello, 25 agosto 1947 – Città di Castello, 2 giugno 2006