Transcript Diapositiva 1

Informed Consent and
Truth-telling: Changing
Realities and Present
Challenges
醫生、病人關係的世界性轉變
：病人私隱有否限制？
譚傑志教授
JOSEPH THAM, MD, PHD
School of Bioethics, Regina Apostolorum, Rome, Italy
Outline 概要
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Truth telling and
Informed Consent
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Historical Background
Principlism, Autonomy
Multiculturalism
Implications for China
Advance Directives
病情告知和知情同
意
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历史背景
原则主义，自主权
多文化主
在中国的应用
預設醫療指示(遺囑
)
Case: "I can put the medicine in
his soup, Doctor!“ 案例: “医生，我
能把药放进他的汤里让他喝!"
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J G W S Wong, Y Poon and E C Hui, “I can
put the medicine in his soup, Doctor!” Journal
of Medical Ethics 2005; 31:262-265.
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一个还有精神分裂症的
A young man with
年轻患者
schizophrenia.
 患者母亲长期将安定药
His mother had been giving
物放进患者所食用的汤
him antipsychotic medication
里
covertly in his soup.
 在这种情况下，医生应
Should the doctor continue to
该继续给患者家属开具
provide a prescription, thus
处方吗？应该允许此类
allowing this to continue?
情况继续发生吗？
Truth telling and the balance
 告知真相以及在个人和
between individual versus
家庭自主权之间的平衡
family autonomy.
Case:
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4/9/2015
65 y.o. Mexican woman, immigrant dx with
aggressive late stage ovarian cancer. Poor
prognosis.
Her family explicitly told MDs that she
would not want to hear any bad news. It
may cause too much trauma
What should the MD do in this case?
4
Historical Background
历史背景
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Modern Medicine
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Curing and treatment options
Better diagnosis, prognosis
Paternalism to Patient’s
rights
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Appearance of Bioethics
Cultural changes in 1960s
Scandals and abuses became
public
Right’s movements, distrust
with authority figures
Legal cases
现代医学
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多种处理和治疗方式的
选择
更好的诊断及预后
家长式作风对患者权利
的影响
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生命伦理学的出现
在1960s年代出现的文
化改革
医学丑闻和陋习公开化
权利运动，对权威人士
的不信任
诉讼案件
A bit of history
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4/9/2015
Abuses
Patients’ rights to
know
Legal challenges
Ethics comes
before the law?
Protect the patients
or protect MDs
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濫用
患者的知情權
法律上的挑戰
倫理置於法律面前
？
保障病人或保護醫
生?
6
Principlism 原则主义
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Product of modern philosophy 现代哲学的产物
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Analytic philosophy 分析性哲学
Normative ethics 规范伦理
National Commission for the Protection of Human
Subjects 1974-1978
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Abuses 滥用
National Research Act 1974: 12 commissioners to identify
ethical principles (Engelhardt's sin of his youth)
Belmont Report 1978
Principles 原则
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Respect for persons 对人的尊重—informed consent 知情同意
Beneficence行善原则—risk-benefit ratio 风险-利益比
Justice 公平 —subject selection 受试者选择
Quasi-official status 似乎获得官方正式的地位
Principlism 原则主义
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Beauchamp and
Childress: Principles of
Biomedical Ethics
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Autonomy, beneficence,
nonmaleficence, justice
Prima facie principles
Popularity and
practicability: clinics, public
policy, doctor-patient
relationship
Presumes common morality
Intuitionism or emotivism
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Beauchamp 和
Childress: 生命医学伦
理学原则
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自主权，行善，不作恶
，公平
初次印象原则
普及性和实用性：临床
，公共卫生政策，医患
关系
假定拥有共同的道德标
准
直觉主义，动感情主义
Challenges to Principlism
原则主义面临的挑战
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Tyranny of autonomy
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Trumping all other
principles
No consensus
Law (Patient Selfdetermination Act 1990)
Anti-paternalism, antiauthority
Individualism
Inadequate: not all choices
are good
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自主权的 “独断专行”
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以其他所有原则为幌子
无法达成一致意见
法律 (患者自主决策法案
Patient Selfdetermination Act 1990)
反家长主义，反权威主
义
个人主义
不足之处：并不是所有
的选择都是有好处的
Challenges to Principlism
原则主义面临的挑战
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Autonomy and informed
consent
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签署某种文件
合适而谨慎的个人标准
患者拥有“不知情”的
权利吗?
自主权与告知真相
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Never lie to patient.
Truth could never be harmful?
Autonomy and family
decisions
Ambiguity of 4 principles and
their secularized context
自主权与知情同意
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Autonomy and truth-telling
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Signing a paper
Reasonable and prudent
person standard.
Patient’s right NOT to know?
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永远不向患者撒谎
难道真相永远都不会造
成伤害吗?
自主权与家庭决策
4项原则的模糊表述以
及各自的俗世语境
Challenges to Principlism
原则主义面临的挑战
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Principlism
Neo-casuistry
Consensus ethics
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Engelhardt’s
content-less
consensus ethics
Contextual ethics
Pragmatic ethics
Utilitarian ethics
Liberalism and
nihilism
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原则主义
新诡辩论
共识伦理学
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Engelhardt 無內容
的共识伦理学
背景性伦理学
实用主义伦理学
功利主义伦理学
自由主义和虚无主
义
Challenges to Principlism
原则主义面临的挑战
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Controversial
Inhuman and unrealistic
Ignores the fact hat the
person is not just an
isolated individual, but has
ties to family, friends,
religion, society.
Immigrants and
multurculturalism:
importance of family in
healthcare decision-making
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富有争议的
不人道而且不现实
忽略了人不是一个
孤立的个体，而是
与家庭、朋友、宗
教、以及社会等紧
密相连这一事实。
移民和多文化主义:
家庭在医疗决策中
的重要性
Autonomy
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Autonomy = selfdetermination
No more “paternalism”
Tyranny of autonomy?
Must MD do everything
patients request? Eg.
female circumcision,
etc.
4/9/2015
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自治=自決
沒有更多的“家長
式“
自主權暴的政？
醫師必須盡一切病
人要求？例如。女
性割禮等
13
Challenges
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4/9/2015
Becomes a piece of
paper
How much
information is
needed?
Can informed
consent be truly
informed?
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變成了一張紙
需要多少信息？
知情同意是真正可
以告知情況？
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Relational Self 關係性自我
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The enhanced patient
autonomy approach requires
the inclusion of family
members in the decision
making process. (Surbone,
2006)
Patient autonomy = complex
concept referring to both
one’s capacity to choose and
to one’s ability to implement
one’s choices
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得到提升的患者的自
主权需要将家庭成员
纳入到决策制定过程
中来 (Surbone,
2006)
患者的自主权 = 与个
人的选择能力以及执
行个人选择的能力相
关的复杂概念
New paradigm
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4/9/2015
Autonomy as
individual self vs
relational self
Family, other
members, etc.
Decision making
Truth telling
Breaking bad news
Placebo
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自治 = 個人自我還
是關係自我
家庭其他成員等
決策
病情告知
壞消息
安慰劑
16
New Paradigm
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Do patients want to know
bad news?
Fear from MD > patient
Not to let hope die?
Deception to maintain
hope?
When to tell, how to tell
(sequence), who to tell…
Family involvement can
soften the impact
Rights to refuse to know?
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4/9/2015
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病人想知道壞消息
？
醫師>病人害怕
不要讓希望死嗎？
騙保持希望？
當告之，如何辨別
真假（序列），誰
告訴...
家庭的參與可以軟
化影響
有權拒絕知道嗎？
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Multiculturalism
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4/9/2015
Challenging the
individualist
approach
Patient’s culture,
religion, values
system, etc.
MD’s knowledge of
these systems,
strategies to be
culturally sensitive
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挑戰個人主義方法
病人的文化，宗教
，價值觀系統等
醫師對這些系統的
知識，在文化識相
的戰略
18
In China 對於中国
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家庭主义為成在中国的初
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次印象
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家庭，村，县 ，省，国家
，民族…
原则主义的知情同意以及
告知真相在实践中所遇到
的困难
家庭主义与西方的關係性
自我概念的趋同
挑战：逐渐缩小的家庭规
模，个人主义
Familism as prima facie in
China
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Family, village, province,
nation
Difficulties with informed
consent and truth telling
practices of principlism
Convergence of familism
with the relational self
concept in the West
Challenges: smaller family
units, individualism
保持信任
尊敬他人
真相
避免强迫或操縱
維持联络
的价值
Advanced Directives from a
Catholic Perspective
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Francisco de Vitoria
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ordinary vs. extraordinary means 普通 vs. 特殊的手段
Medical advances now gave doctors much more
options to cure and prolong life, and even prolong
the dying process.
Pope Pius XII in 1957.
Ordinary vs extraordinary
means
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Ordinary (proportionate 相稱) means are those
basic care and treatments which doctors are
obligated to provide and which under normal
circumstances, patients should not refuse—run of
the mill medical treatment, hygiene, antibiotics,
etc.
Extraordinary (disproportionate 不相稱) means
are those medical measures that can cause undue
burden on the patients and the family, and
therefore patients are not obliged to undergo
these (experimental) treatments, or if they have
been started could ask for their withdrawal.
Ordinary vs extraordinary
means
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There are objective and subjective elements that the
patients and doctors must weigh the risks and benefits
in each case.
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Objective elements such as the difficulties, pain risk, cost and
success rates, etc.
Subjective elements include fear, anxiety, physical or
psychological suffering, shame, the desire to live on, the time to
settle affairs, etc.
Preferred term is proportionality, since some ordinary
means can become disproportionate in very ill patients,
and some extraordinary means can be proportionate to
patient needs when the risk and benefits are weighed.
Therapeutic obstinacy and
Euthanasia
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Two extremes to be avoided.
Therapeutic obstinacy 治療頑固: When all
available treatments have been tried and
patient is dying, doctors should accept this
rather than employing all technology to prolong
the dying process, thus causing more suffering
and does not respect the dignity of the person.
(Unrealistic expectations from patients, family
and doctors: Medicine or doctors seen as
saviors, failure). Pius XII: extraordinary means
can be withheld or withdrawn.
Therapeutic obstinacy and
Euthanasia
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CCC 2278 Discontinuing medical procedures that are
burdensome, dangerous, extraordinary, or
disproportionate to the expected outcome can be
legitimate; it is the refusal of “over-zealous” treatment.
“過分熱心” 治療 Here one does not will to cause
death; one's inability to impede it is merely accepted.
The decisions should be made by the patient if he is
competent and able or, if not, by those legally entitled
to act for the patient, whose reasonable will and
legitimate interests must always be respected.
Therapeutic obstinacy and
Euthanasia
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Euthanasia: to end someone’s
suffering by intentionally ending
his or her life.
“By euthanasia is understood an
action or an omission which of
itself or by intention causes death,
in order that all suffering may in
this way be eliminated.”
(Declaration on Euthanasia 1980,
EV, CCC)
Level of intention, includes
omission if the intention is there to
provoke death. Could be
voluntary or non-voluntary.
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安樂死：結束一個
人的痛苦，故意結
束她的生命。
意向的層次
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包括不行動故意造
成死亡
可能是自願或不自
願的。
PVS and ANH
植物人, 人工營養與水分
Water and nutrition are basic needs,
not therapy.
 Withdrawal with the intention to
cause death, since PVS patients could
live on indefinitely. That is, cause of
death is starvation and dehydration.
 Recent report form NEJM—some of
them can have thought processes.
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Historical Background on
Advanced directives
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Quinlan Case: Natural Death Act 1979
Karen Ann Quinlan, PVS and on ventilator. Parents
petitioned for withdrawal of respirator, but doctors
refused. Court decided that ventilator is an
extraordinary means, and can be withdrawn, citing Pius
XII.
Natural Death Act: There is a right to express one’s will
regarding life sustaining treatments, and the right to
withdraw or withhold them. In the case of mental
incapacity, these rights can be expressed by either
Advanced Directives (written document) or durable
power of attorney (proxy) by naming someone who
could make the decision on behalf of the patient.
Historical Background on
Advanced directives
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Cruzan Case: Patient Self-determination Act 1991
Nancy Cruzan also PVS, on artificial nutrition and
hydration (PEG). Family wanted removal of tube
feeding against doctor’s judgment. They were
able to demonstrate retrospectively that this was
the patient’s desire.
Patient Self-determination Act requires all health
care institutions to advise all patients admitted to
their facilities the availability of advanced
directives.
Terri Schiavo
Context of the Living Will
movement
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Fear of technology: hooked up to machine and
living an undignified existence
Euthanasia movement in the 1980s found it
difficult to change the laws to permit
euthanasia.
More emphasis on who decides rather than what
is best for the patient.
Individualism: Self-determination often
becomes the only criteria
Critiques
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Difficulties in explaining to patients the medical conditions, and
they could be subject to manipulation, undue fears and ideological
pressures. Not truly informed consent.
Difficulty in foreseeing all possible future situations which can be
complex. When circumstances change, people can change their
minds (eg. Charles Kao)
Damaging relationships between doctors and patients: Doctors
just execute the patient decision as a robot
Tyranny of Autonomy: Respect of the person includes looking for
what is best for the patient.
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Not all decisions are wise and good. One can choose the wrong
thing. “No man is an island”—recent shift of emphasis that decision
making is best when made in a wider “relational” context including
family, friends, and co-religionists. Familism in Asia.
Legal frameworks
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Legally binding (USA, Australia, UK,
Holland, Belgium) or just consultative and
indicative (Italy, Germany, Austria)
Existence of Catholic versions of “Advanced
Directives” that respect the Catholic
teaching (e.g. NCBC). In general,
resistance to its use because of these
problems.
Introduction of the Concept of
Advanced Directives in Hong Kong
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Terminal illness / irreversible coma / PVS, are very different conditions.
Different principles apply here—for eg., any treatment in truly irreversible
coma would be wrong, even ANH. Whereas in the case of PVS, withdrawal
of ANH would be euthanasia.
Euthanasia defined as “direct intentional killing of a patient as a part of the
medical care being offered.” Omission can also be a means of intentional
killing.
Artificial vs. natural rather than proportionality the criteria. That is,
artificial means are always inappropriate or burdensome… Definition of
life-sustaining treatment includes ANH. (Catholic hospitals should not
cooperate with this)
Family or relatives seen as enemies to patient self-determination.
Elimination of proxy as an option. This is absurd in the Asian context,
especially in view of the recent shift of opinion coming from the Western
experience.
Options only to withdraw or withhold treatments, no mention of desire to
continue treatments under these conditions. Doubt: cost saving measures?