Endoflife decision making: a matter of lifestance

1
End-of-life decision making a matter of
life-stance?
Joachim Cohen
2
Index

• Background
• Popular beliefs on the role of life-stance
• Bioethical literature on role of life-stance
• Study on influence of life-stance on ELD-making
  in 6 countries
• What else influences ELD-making study on
  influence of care setting on eld-making
• Conclusions

3
Background popular visions

• Hugo Claus
• Famous Belgian writer
• Suffered from dementia (early stage)
• Chose euthanasia

4
Background popular visions

• By just stepping out of life, one does not answer
  the problem of suffering and death. One gives it
  a wide berth and avoids it. Avoiding is not an
  act of heroïsm, not feed for front-page news
• Our society seems to no longer know how to handle
  death and suffering'
• Media and intellectuals have glorified the
  voluntary death of Claus and have described it as
  a noble act and an example for other patients

Cardinal Danneels In his Homily (21 March)
5
Background popular visions

• Strong reactions in media
• fundamental, even unbridgeable and irreconcilable
  differences between religious and non-religious
  people regarding decisions at the end of life
• From where this assertion?
• Is this true?

6
Background bioethical literature

• Non-treatment decisions/possibly life-shortening
  alleviation of pain and symptoms
• In Christian (bio)ethics, life is the gift of
  God.
• A natural reaction is therefore to postpone death
  and to prolong life (especially when this
  benefits the spiritual condition).
• However, realisation that life is not an absolute
  good and death inevitable, and that life need not
  be maintained at all costs or by all
  technological means available.
• Concretely, withholding and withdrawing a
  potential therapy, on the request of a competent
  patient and --particularly so in Catholicism-- on
  the premise that it had not as its intention the
  death of the patient, are justified (even in the
  Popes Declaration on Euthanasia) as an
  acceptance of the human condition in the
  Christian view
• On the same premise, the use of analgesia is also
  deemed appropriate to avoid terminal suffering.
  Roman Catholics have adopted the doctrine of
  double effect, making APS morally acceptable even
  if it has a life shortening effect, as long as
  this was an unintended (but complied with)
  result. The intentionality is of less importance
  for Protestants.
• Donovan GK. Decisions at the end of life
  Catholic tradition. Christ.Bioeth.
  19973(3)188-203
• Engelhardt HT, Jr., Iltis AS. End-of-life the
  traditional Christian view. Lancet
  2005366(9490)1045-49
• Cozby D. Prolonging life an Orthodox Christian
  perspective. Christ.Bioeth. 19973(3)204-21
• Kopfensteiner TR. Death with dignity a Roman
  Catholic perspective. Linacre.Q. 199663(4)64-75

7
Background bioethical literature

• Terminal sedation
• In Christian doctrine, the case of sedation has a
  particular position. In Christianity, and
  particularly in Catholicism, the use of drugs is
  regarded as wrong when it denies the dying person
  of consciousness without a serious reason. When
  sedation takes away the final opportunity for
  repentance and sedation eliminates the
  interpersonal aspects of human suffering, does
  not allow the individual to meet Christ in full
  consciousness, it is not acceptable.
• Therefore we would expect that terminal sedation
  is regarded as less acceptable by religious
  physicians.
• Pauls M, Hutchinson RC. Bioethics for clinicians
  28. Protestant bioethics. CMAJ.
  2002166(3)339-43.
• Donovan GK. Decisions at the end of life
  Catholic tradition. Christ.Bioeth.
  19973(3)188-203

8
Background bioethical literature

• Euthanasia/PAS
• prohibited in all dominant Christian life-stances
• In the official Christian view even the consent
  of the patient does not defeat the evil. It is
  viewed as an anguished plea for help and love,
  but Christians need to create conditions wherein
  the person requesting euthanasia can gain meaning
  without choosing death
• Usually not one uniform declaration, and even
  (albeit very rare) exceptions supporting
  euthanasia in certain circumstances
• Uniform declaration is however found in
  Catholicism Catholic Churchs official
  declaration on euthanasia euthanasia or
  assisting in suicide is immoral and equal to
  killing
• In Catholicism an individual is neither the
  author of his own life, nor the arbiter of his
  own death, but a steward of Gods sacred gift of
  life. Death is only accepted as an inevitable end
• Engelhardt HT, Jr., Iltis AS. End-of-life the
  traditional Christian view. Lancet
  2005366(9490)1045-49.
• Coleson RE. Contemporary religious viewpoints on
  suicide, physician-assisted suicide, and
  voluntary active euthanasia. Duquesne.Law Rev.
  199635(1)43-80
• Kopfensteiner TR. Death with dignity a Roman
  Catholic perspective. Linacre.Q. 199663(4)64-75
  
• Larue GA. Euthanasia and religion. A survey of
  the attitudes of world religions to the
  right-to-die. Los Angeles The Hemlock Society,
  1985.

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Background bioethical literature

• Lancet series end of life perspectives
• Reaction (KK Mahawar)
• () I am not sure of the importance one should
  attach to these observations while dealing with
  patients of different faiths. Deductions and
  interpretations based on anecdotal historical
  evidence are subject to serious flaws and
  commonly do not reflect the correct position of
  () its followers.
• ? dispute over the importance and direct
  influence of these traditional religious
  doctrines on the actual decision making of
  physicians, when common sense and general
  sentiments of humanity come into play in the
  actual dealing with patients

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• Research question
• Are viewpoints from different life-stances on
  different kinds of end-of-life decisions also
  translated into attitudes and actual practices of
  the physicians who adhere to these life stances?

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Study 1 life-stance

• Attitudes and behavior of physicians? Influence
  of life stance?

Eureld 2- study
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Background ELDs

• Medical end-of-life decisions

1. Non treatment decision (NTD) - taking
into account life-shortening - explicitly
intending life-shortening 2. Intensifying
alleviation of pain and other symptoms (APS) -
taking into account life-shortening -
co-intending life-shortening 3. Use of lethal
drugs (LD) - explicitly intending
life-shortening ? Euthanasia (EUTH) at
patients request
Decisions of physicians to perform certain acts
or to withdraw certain acts
With an explicit intention or partly with the
intention to hasten the patients end of life,
or
In which the physician at least took into account
a possible hastening of the patients end of life
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Achtergrond MBLs

• Medical end-of-life decisions

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Study 1 life-stance

• What do you consider to be your religion or
  philosophy of life?
• Roman Catholic
• Protestant
• Other religion
• Non religious, but specific life philosophy
  ..
• No specific life philosophy

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Study 1 life-stance
Life stances of physicians by country
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Results attitudes/behaviour physicians
influence of life-stance
Attitudes towards NTD/APS
17
Results attitudes/behaviour physicians
influence of life-stance
Attitudes towards LD
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Results attitudes/behaviour physicians
influence of life-stance
Life-preserving attitudes
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Results attitudes/behaviour physicians
influence of life-stance
Hypothetical behaviour
Lethal drugs at patients request
Terminal sedation at patients request
APS at patients request
20
Results attitudes/behaviour physicians
influence of life-stance
Actual behaviour
Terminal sedation
APS
euthanasia
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Results attitudes/behaviour physicians
influence of life-stance

• Differential influence of patient request
• More of influence in non-religious physicians
• More in Protestants than in Catholics
• But clear influence in religious physicians
• Sensitive to the peculiarity of circumstances

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Conclusions

• Physicians life stances may result in different
  ELD-making
• Especially large differences wrt use of lethal
  drugs
• Incongruence between official doctrinal views and
  actual stances of followers of these doctrines
• - teachings of religious bodies indeed influence
  ELD-making, but are certainly not blankly
  accepted by physicians.
• - more effect of doctrinal teachings on general
  attitudes, less on actual behaviour (more
  realistic cases and specific circumstances)
• explanation adaptation to particular
  situations, to needs and wishes of patients,
  considerations of humaneness
• Country of residence has a larger effect
• country-specific surrounding culture is a more
  relevant determinant

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• What else influences end-of-life decision making?
• Care setting ?

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• Death certificate study in 4 European countries
• ? Large at random sample of death certificates
  (death between 2000-2001)
• ? Questionnaire to treating physician
• ? Total design method complex anonimity
  procedures
• No respondents 2950 2939 3248 3355
• Response percentage 59 62 61 67
• Variabeles

Eureld 1- study

• Differences in ELDs by setting of end-of-life
  care?

Via Questionnaire In this death the physician
has a. withdrawn or witheld a treatment NTD 1.
taking into account possible life-shortening
NTD1 2. explicitly intending life
shortening NTD2 b. Intensified
pain and symptom management APS
1.eaking into account possible life-shortening
APS1 2. co-intending
life-shortening APS2 c.
Supplied, administered, or prescribed drugs with
an explicit intention to hasten death PAD
-.administered at explicit request patient
euthanasia

-
- supplied, patient takes drugs
PAS - no request
NOR

• Via death certificates
• Place of death
• home(h), hospital(ht), care home (ch)
• sex
• age
• cause of death

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Result ELDs by place of death
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Resultaat MBL per plaats van overlijden
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Result ELD by place of death terminal
sedation
continuous deep sedation until death using drugs
(e.g. barbiturates, benzos)
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Result ELD by place of death

• Discussion about ELD by place
• With patient
• With family
• more at home
• With other healthcare professionals
• ? more in the hospital

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CONCLUSIONS
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Conclusions

• Philosophical doctrines influence end-of-life
  attitudes and behaviour of physicians, but not in
  an imperative way. Physicians allow for
  adaptation to particular situations.
• End-of-life decision making also seems to depend
  on the setting where people die
• Surrounding culture is perhaps most crucial

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End-of-life decisions making a matter of
life-stance?
E-mail joachim.cohen_at_vub.ac.be Web www.endoflife
care.be/ZrL
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Resultaatlandenspecifieke trends

• Significant relative increase (multivariate)

33
Resultaatlandenspecifieke trends

• No significant relative change (multivariate)

34
Resultaatlandenspecifieke trends

• Significant relative decrease (multivariate)

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Achtergrond algemeen

• Veranderingen in het stervensproces
• van medicalisering naar goede dood

Stervensproces in moderniteit Medicalisering en
institutionalisering van het overlijden

• Veranderingen
• Individualisering
• o.a. wetgeving rond euthanasie en
  patiëntenrechten
• Demografische en epidemiologische veranderingen
• Epidemiologische transitie
• Vergrijzing
• Kritiek op technologische imperatief
• Aandacht voor goede dood

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Resultaatverklaringen voor de veranderingen

• Multivariate analyse

Survey jaar land geslacht leeftijd
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Resultaatverklaringen voor de veranderingen

• Multivariate analyse

onderwijsniveau, sociale klasse
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Resultaatverklaringen voor de veranderingen

• Multivariate analysis

• religious beliefs
• Religious denomination
• Frequency of church attendance
• Believe in God, life after death, hell heaven,
  sinn

39
Resultaatverklaringen voor de veranderingen

• Multivariate analysis

• Permissiveness
• Acceptance of
• Divorce
• Abortion
• Suicide
• Homosexuality
• Adultery

40
Resultaat attitudes/gedrag artsen invloed
levensbeschouwing
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Resultaat verklaring voor verschillen tussen
landen
Country
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Resultaat verklaring voor verschillen tussen
landen
Country cause of death age sex
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Resultaat verklaring voor verschillen tussen
landen
Country cause of death age sex care home
beds
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Resultaat verklaring voor verschillen tussen
landen
Country cause of death age sex care home
beds hospital beds
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ResultaatVerandering in publieke aanvaarding
euthanasie

• Trends in euthanasia acceptance

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Resultaatverklaringen voor de veranderingen

• Belangrijkste verklaringen
• Afgenomen religiositeit (secularisatie)
• Veranderde attitude naar zelfbeschikkingsrecht
  (vb. homoseksualiteit, echtscheiding, abortus,)
• (Veranderde houdingen rond levenseinde???)

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Resultaat euthanasie-aanvaarding in Europa

• 1/3 (highest acceptance)

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Resultaat euthanasie-aanvaarding in Europa

• 2/3 (average acceptance)

49
Resultaat euthanasie-aanvaarding in Europa

• 3/3 (lowest acceptance)

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Resultaat verklaring voor verschillen
religiosity and permissiveness, related
to acceptance of euthanasia
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Resultaat verklaring voor verschillen

• Ordinal logistic regression (PLUM)
• Higher acceptance of euthanasia
• lower religiosity
• lower age (younger cohorts)
• higher educational level
• non-manual and non-agricultural social class
• country of residence (country-specific
  differences)