Professional Documents
Culture Documents
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Section 1.20
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International Maternal & Child Health Care
The ethics of consent possible the information should be given in a way that is
Informed consent is the process of a ‘competent’ patient clearly understood and remembered.
receiving information needed to make a choice. It has five All this information may be overwhelming for patients
elements: and their families. The principles of beneficence and non-
1 Disclosure of information: The patient has the right to maleficence might suggest that a more paternalistic and
the information necessary to make his or her decisions less forthright doctor might be behaving more ethically.
and to be informed of the consequences of his or her However, it is important that personal views about how
decisions. much to disclose are not imposed on the patient when
2 Comprehension: The patient should understand the explaining an illness or treatment to them.
purpose of any test or treatment, the implications of When providing information, it is essential that profes-
the results, and the implications of not having the test sionals do their utmost to find out about the patient’s (and
or treatment. family’s) needs and priorities. This is often the most difficult
3 Voluntariness (freedom from control by others): The part of the communication process, and involves respond-
patient has the right to self- determination, which ing honestly to any questions the patient or family raise and,
includes making free decisions regarding him- or herself. as far as possible, answering these as fully as possible. It
4 Competence: A mentally competent adult patient has is for the competent patient, not the doctor, to determine
the right to give or withhold consent to any diagnostic what is in the patient’s own best interests.
procedure or therapy. Finally, information for decision making should not be
5 Choice: Children may be able to consent to some pro- withheld from the patient and their family, unless it is judged
cedures, but not to other more complex procedures. that disclosure would cause the patient or family serious
harm (the principle of non-maleficence). It may also be
Article 12 of the United Nations Convention on the Rights inappropriate to discuss treatments that are not available.
of the Child (1989) states:
Emergency situations
‘A child who is capable of forming his/her view has If the patient is unconscious or otherwise unable to consent
the right to express those views freely on all matters to, or decline, treatment and there is no one legally able to
affecting the child, the views of the child being given consent for them (this varies between countries, and may be
due weight in accordance with the age and maturity the patient’s child, brother, sister, etc.), urgent investigation
of the child.’ and treatment may be carried out. This is sometimes called
presumed consent, where the healthcare worker does what
they think is in the best interests of the patient.
The child’s competence and parental The UK General Medical Council (1998) advice on
involvement: respect for autonomy consent for emergencies includes the following:
Where a child is not competent to give or withhold consent
to treatment, a person with parental responsibility must act ‘In an emergency, where consent cannot be obtained,
as an advocate for the child to authorise investigations or you may provide medical treatment to anyone, pro-
treatment which are in the child’s best interests. Parents vided the treatment is limited to what is immediately
have the right to be involved in the decision-making pro- necessary to save life or avoid significant deterioration
cess, and this right is protected by law in most countries. in the patient’s health.’
It is the doctor’s responsibility to assess a child’s capac-
ity to decide whether he or she can consent to, or refuse, Summary of consent
a proposed investigation or treatment before providing it. Practise within the limits of the law of the country (unless
A competent child must be able to understand the nature, this is harmful to the patient).
purpose and possible consequences of the proposed Assess the level of competence of the patient before
investigation or treatment, as well as the consequence of deciding how much and how to tell them.
non-treatment. Competence is presumed at different ages The patient and their family can tell you how much
in different countries. Children’s competence is related to information they need to make a decision.
experience as well as to age, and young children can often All decisions must be free from coercion.
clearly demonstrate that they have the competence to make
decisions about treatment. Such competence has a legal Confidentiality
standing in some countries (such as the so-called ‘Gillick’ This is not an ethical principle, but it involves a respect for
competence in English law). autonomy, beneficence towards the patient, and a desire
to act with non-maleficence.
Providing the information: an essential Confidentiality respects an individual’s autonomy and
component of consent their right to control information relating to their own health.
In some societies, disease and pain are interpreted in terms In keeping information confidential, the doctor is acting
of sin and retribution. This may make it difficult for health beneficently.
workers to explain diagnostic and management options in Most countries have laws to enable the breaking of
medical terms. confidentiality in some circumstances – for example, to
Information should include details of the possible diag- protect the safety of a third person, or:
noses and prognosis, possible management options, the 1 to prevent a serious crime, as information may need to
purpose of a proposed investigation or treatment, and the be disclosed to the police
likely benefits and probabilities of success, and discussion 2 to report suspected child abuse
about any serious or frequently occurring risks. Wherever 3 to report someone who is HIV positive who is unwilling
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Section 1.20
to inform their sexual partner(s) about this and does not the agent knows about the patient’s condition and their
consent to the healthcare worker telling the partner(s). desire to die, and commits the act with the intention of
The healthcare worker should inform the patient of his ending life
or her intention to inform the partner(s). the act is undertaken with compassion and without
personal gain.
Information should only be disclosed without the
patient’s consent by health workers to individuals who Assisted suicide
need to know, and the recipient(s) of such information This is knowingly and intentionally providing a person with
should keep it confidential. the knowledge or means to commit suicide, including
counselling about lethal doses of drugs, prescribing or
Patient rights (family rights in the case of supplying the drugs.
young children) This does not mean that healthcare workers should
These are as follows: abandon dying patients, but rather they should provide
1 to participate in developing a plan of treatment compassionate end-of-life care, including relief of pain and
2 to receive an explanation of how components of treat- suffering (see Section 1.16).
ment will be provided This includes patients who have refused potentially life-
3 only to have confidentiality broken under certain condi- saving treatment while competent to do so. For example, if
tions (e.g. knowledge or suspicion of child abuse, intent a patient refuses potentially life-saving surgery for a ruptured
of the patient to harm him- or herself or others, or the ectopic pregnancy, they should still receive nursing and
presence of a communicable disease that may harm medical care and symptomatic relief of suffering.
others)
4 to receive clinically appropriate care and treatment Withholding or withdrawing medical care
5 to be treated in a manner that is free from abuse, dis- If the patient is a child, the healthcare team and the parents
crimination and/or exploitation must enter a partnership of care whose function is to serve
6 to be treated by staff who are sensitive to the family’s the best interests of the child.
cultural background 1 Although there is no significant ethical difference
7 to be given privacy. between withdrawing and withholding treatment, there
are significant practical differences.
2 Optimal ethical decision making concerning patients
End-of-life issues requires open and timely communication between
These include the following: members of the healthcare team, the patient and the
attempts to prolong the life of a dying patient family.
euthanasia and medically assisted suicide 3 Parents must decide on behalf of a child who is unable
care of terminally ill patients. to express preferences, unless they are clearly acting
against the child’s best interests. Cultural practices and
Attempts to prolong the life of a dying religious beliefs may have an impact on this.
patient 4 The wishes (antecedent, if known) of a child who has
Where there is no benefit to the patient these attempts are sufficient understanding and experience should be given
unethical. Futile treatments are those that are assessed as substantial consideration.
bound to fail and which are prolonging the dying phase. 5 Resolution of disagreement should be by discussion,
Withholding or withdrawing treatment is not the same as consultation and consensus.
participating in assisted suicide or assisted euthanasia. This 6 The duty of care is not an absolute duty to preserve life
does not include palliative treatment, which must always by all means.
be offered (see Section 1.16). 7 A shift from life-sustaining treatment to palliation repre-
The patient may decide to discontinue treatment for a sents a change in aims and objectives, and does not
life-threatening illness while able to understand the informa- constitute a withdrawal of care.
tion needed to make an informed choice, and prefer to die 8 Health workers should never withdraw treatments that
with dignity, being treated palliatively. Alternatively, they may alleviate pain or promote comfort.
wish to continue treatment even if they understand that it 9 There is a difference between treatment of the dying
can provide little benefit. They must always be offered pal- patient and euthanasia. When a dying patient is receiv-
liative treatment, whatever their choice. ing palliative care, the underlying cause of death is
the disease process. Treatments that may incidentally
hasten death are justified, if their primary aim is to relieve
Euthanasia and assisted suicide are illegal in most countries suffering.
and prohibited in most medical codes of ethics, and the
WMA states that assisted suicide is unethical.
Hospital ethics committees
Despite the growth of medical ethics and the publication
Euthanasia of many professional codes of practice in recent years, it
Euthanasia (also known as ‘assisted dying’) means inten- is still difficult for individuals to obtain guidance in resolving
tionally performing an act that is intended to end another specific ethical dilemmas they face. Some hospitals have
person’s life and: set up a hospital ethics committee or clinical ethics forum
the patient has voluntarily asked for their life to be ended to discuss these dilemmas.
and is competent, informed and has an incurable illness The jurisdiction of the ethics committee includes clinical
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International Maternal & Child Health Care
situations involving all patients, including infants and chil- There are a number of national and international guidelines
dren under 18 years of age. and regulations with regard to research (e.g. WMA, Council
for International Organizations of Medical Science in col-
Function of hospital ethics committees laboration with WHO, European Council and European
1 Education: The committee should provide members of Parliament), but these are often inappropriate for under-
the hospital/medical staff with access to the language, resourced countries.
concepts, principles and knowledge of ethics.
2 Policy review and development: the committee can Consent to research
assist the hospital and healthcare staff in the develop- For this to be valid, it should be given freely after full disclo-
ment of polices and guidelines regarding recurrent sure of all relevant information in a manner understandable
ethical issues and questions which arise in the care of by the research subject. Consent for the research may be
individual patients. withdrawn by the subject at any time without there being
3 Case review: the committee should be a forum for any adverse effects on the subject. However, in some
analysis of ethical questions that arise in the care of communities it is usual for male members of the family or
individual patients. a community to make decisions on behalf of women and
children.
Appointment and membership
The committee is multidisciplinary, and should include doc- Level of care
tors, nurses, midwives, social worker, pastoral care, hospital The level of care provided to the control group (i.e. the
director and chief of medical staff. A 30% membership group that is not having the active potential treatment) is
from the general community has been suggested to ensure controversial. Some argue that, if the research is externally
breadth of perspective and clarity of output. sponsored, the people in the control group should receive
the same standard of care as would be received in the
sponsor’s country. Others argue that this prevents some
Research ethics research from being conducted. For example, if two treat-
Each year £35–40 billion is spent on healthcare research ments are being compared in the under-resourced country,
worldwide, but only 10% of this is aimed at the health it is more appropriate for the new treatment to be compared
problems of 90% of the world’s population. with the one currently available in that country, not one that
Under- resourced countries need research to help is inaccessible there.
to prevent and treat diseases such as tuberculosis and
malaria, but lack funds and trained personnel, and therefore Post-research considerations
need expertise and financial support from public and private If an intervention is effective, should it be made available to
sectors in wealthy countries. This can lead to exploitation the research participants and the community? The country
of the people in the country where research is needed and concerned may not be able to afford this, particularly if it is
undertaken. a new and expensive drug, but a decision should be made
The principles that should be followed by anyone who with the national government via its research ethics com-
is designing or conducting healthcare research in under- mittee about what will happen after the trial period is over.
resourced countries are as follows:
to alleviate suffering
to show respect for people Healthcare worker relationships
to be sensitive to cultural differences As well as having an ethical duty towards patients, health-
not to exploit those who are vulnerable care workers have an ethical duty towards other healthcare
the scientific and social importance of the research workers, to the healthcare system and to society.
should outweigh the risks and burdens to the study
subjects The health worker–patient relationship
all research should have social as well as scientific value 1 The healthcare worker’s primary role is to be an advo-
the populations involved in the research should benefit cate for each patient’s care and well-being. They should
from the results always place the interests of their patients first. The
staff working in the public sector where there are insuf- healthcare worker also has a duty to accept responsibil-
ficient staff to provide proper care for patients (e.g. in ity for his or her clinical decisions.
most of sub-Saharan Africa) should not be taken from 2 The healthcare worker must treat each patient with
their work in order to undertake research. honesty, compassion, dignity and respect. They should
not exclude or discriminate against any patient because
It is important that there are national guidelines in every of ethnic origin, race, sex, creed, age, socio-economic
country which set priorities for healthcare research, and if status, diagnosis, physical or mental disability, or sexual
external sponsors propose research outside these priori- orientation.
ties, it must be justified to the appropriate research ethics 3 The healthcare worker’s commitment to patients
committees. includes health education and continuity of care by
There should be three levels of review for each research good communication with subsequent health workers.
proposal:
1 relevance to healthcare priorities in the country The healthcare worker–healthcare worker
2 scientific validity relationship
3 ethical acceptability. Traditionally, healthcare workers have been part of a hier-
archical system, both within and between professions.
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Section 1.20
Doctors have been at the top of the caregiving hierarchy, In other circumstances there may be requests from the
above nurses and other healthcare workers. This situation police or the military to take part in practices that violate
is gradually changing, with other healthcare professionals human rights (e.g. torture). Healthcare workers should
increasingly questioning the reasoning behind a doctor’s report unjustified interference in the care of their patients,
decision. especially if fundamental human rights are being denied.
1 Healthcare workers have a responsibility to maintain If the authorities are unhelpful, contact with a national
moral integrity, intellectual honesty and clinical compe- medical or nursing association, the WMA or World Nursing
tence. They should be aware of the limitations of their Federation, or a human rights organisation may be needed.
expertise and seek consultation or assistance in clinical The increasing mobility of society means that healthcare
situations in which they are not expert. workers have a responsibility for global health, including
2 Healthcare workers should work as a team, supporting preventing the spread of infectious diseases between
each other and working together for the benefit of the societies and countries.
patient. Another effect of globalisation is the mobility of health-
3 Healthcare workers have an obligation to educate and care professionals, and their migration from low-income to
share information with colleagues, including trainee high-income countries. The shortage of healthcare workers
healthcare workers. They should be committed to life- is one of the biggest health problems facing low-income
long learning and continuously improve their knowledge countries today.
and clinical skills relevant to their practice. The governments of low-income countries invest in
4 There is an ethical obligation to report impairment or the education and training of healthcare professionals,
misconduct of colleagues in order to prevent potential and therefore lose these resources and the contribution
harm to patients. of these workers when graduates migrate. The factors
considered by the migrant may be economic, social and/
The relationship between the healthcare or family related. Often in low-income countries there are
worker and the system of care low wages, poor working conditions, lack of leadership and
1 The healthcare worker’s duty of patient advocacy should very few incentives, as well as limited opportunities for their
not be altered by the system of healthcare delivery in children. High-income governments encourage migration
which they practise. when there is a need, often with no compensation for the
2 If there are conflicts of interest, the patient’s interests government where the migrant was trained.
should take priority over those of others. This presents an ethical dilemma whereby if emigra-
3 Healthcare professionals should campaign against tion was prevented it would restrict the autonomy of the
unethical practices. individual, but on the other hand the health of a society
4 Healthcare professionals should not be influenced by suffers if there is mass migration of healthcare professionals.
commercial enterprises (e.g. companies that manufac-
ture drugs, diagnostic tools or equipment). The duty of Further reading
the physician is to evaluate objectively what is best for World Organization Against Torture http://kofiannanfoundation.
the patient. Gifts designed to influence clinical practice org/newsroom/speeches/2010/06/world-organisation-
are not acceptable. against-torture (accessed 9 December 2012).
5 Healthcare professionals should advocate to their Medical Foundation for the Care of Victims of Torture www.
freedomfromtorture.org (accessed 9 December 2012).
departments of health for improved medical facilities and
Ethics – World Medical Association. www.wma.net/
treatments for patients where acceptable basic facilities en/20activities/10ethics (accessed 9 December 2012).
and treatments are lacking (e.g. oxygen, effective pain The ICN Code of Ethics for Nurses – International Council of
relief, blood transfusion services, access to vital skills Nurses. www.icn.ch/about-icn/code-of-ethics-for-nurses
such as surgery, basic life-saving drugs). (accessed 9 December 2012).
General Medical Council. GMC List of ethical guidance –
In many countries, there are huge divisions between the General Medical Council. www.gmc-uk.org/guidance/
rich minority and the poor, exploited and disadvantaged ethical_guidance.asp
majority. Healthcare professionals should be aware of this Nuffield Foundation. The Ethics of Clinical Research in
and acknowledge how their actions support such divisions, Developing Countries. http://nuffieldbioethics.org/project/
research-developing-countries-follow/
and aim to provide high standards of care independent of
Naicker S, Plange-Rhule J, Tutt J et al. (2009) Shortage
a patient’s or family’s ability to pay. of healthcare workers in developing countries – Africa.
Ethnicity and Disease, 19, S1 60–4. http://txfvzgw.ishib.
The relationship of the healthcare worker to org/journal/19-1s1/ethn-19-01s1-60.pdf
society Global Health Workforce Alliance (2011) Progress Report
Healthcare workers have a responsibility to society as well on Kampala Declaration and Agenda for Global Action.
as to patients, and sometimes society’s best interests may www.who.int/workforcealliance/knowledge/resources/
take precedence over those of the patient (e.g. mandatory kdagaprogressreport/en/
reporting of patients with a designated disease, those who
are unfit to drive and those suspected of child abuse).
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