HUMAN RIGHTS AND PRESERVATION OF HUMAN HEALTH BY: RAJESH GOVIND DEKATE
HUMAN
RIGHTS AND PRESERVATION OF
HUMAN
HEALTH
AUTHORED BY:
RAJESH GOVIND DEKATE
LL.M Second
Year
Progressive
Education Society’s Modern Law College, Pune
Introduction:
-
The Universal Declaration of Human Rights , adopted in 1948 following
the Second World
War, is generally agreed to be the foundation of international human rights law and represents the universal recognition that basic rights and fundamental freedoms
are inherent to all human beings,
inalienable and equally
applicable to everyone,
and that every one of us is born free and equal in dignity and
rights regardless of our nationality, place of residence, gender,
national or ethnic origin, colour,
religion, language, sexual orientation or any other
status.
Health and its value to human life has been recognized as a basic
human right in Article 25 of the Universal Declaration of Human Rights, which states that:
"Everyone has the right to a
standard of living adequate for the
health and well-being of himself
and his family, including
food, clothing, housing
and medical care and necessary
social services, and
the
right
to
security in
the
event of unemployment,
sickness,
disability, widowhood, old age or other lack of livelihood in circumstances beyond his control" Universal Declaration of Human Rights
The Constitution of the World Health Organization, which also came into effect in 1948,
also
recognises health as a basic human right and states that “the enjoyment of the
highest attainable standard of health
is one of the fundamental rights of every human being without distinction of race, religion, political belief, economic
or social condition”[4].
With numerous nation states endorsing the right to health
as part of their constitution, they are legally obliged to safeguard access to
quality health in a "timely, acceptable and affordable" manner,
whilst ensuring provision
for the determinants of health.
"Understanding health as a human right creates
a legal obligation on states to ensure access
to timely, acceptable,
and affordable health care
of appropriate quality
as well as to providing
for the underlying determinants of health, such as safe and potable
water, sanitation, food,
housing, health-related information and
education, and gender equality." World Health Organization.
“The right to the highest
attainable standard of health” implies
a clear set of legal
obligations on states to ensure appropriate conditions for the enjoyment of health for all people without discrimination. The right to health
is one of a set of
internationally agreed human rights standards, and is inseparable or ‘indivisible’ from these other rights. This means achieving the right to health is both central
to, and dependent upon, the realization of other human rights, to food, housing, work, education, information, and participation. The right to health, as with all other human rights, includes
both freedoms and entitlements:
·
Freedoms[1]
·
Include
the right to control one’s health and body (for example, sexual and reproductive rights) and to be free from
interference (for example, free from torture and non-consensual medical
treatment and experimentation).
·
Entitlements
·
Include
the right to a system of health protection that gives everyone an equal opportunity to enjoy the highest attainable level of health.
Displaced persons are also entitled
to all the rights and fundamental freedoms
that are spelled
out in international human rights instruments. The protection of displaced persons
must therefore be seen in the broader context of the protection
of human rights.
[8]
Core Elements of a Right to Health
Progressive Realization using maximum
available resources
Progressive realization requires governments to take immediate
steps within their means towards the fulfilment of human rights, no
matter what level of resources they have at their disposal. Elimination of discrimination and improvements in the legal
and juridical systems
must be acted upon with immediate effect,
regardless of resource capacity.
Non-Retrogression
Existing protection of economic, social,
and cultural rights should not be allowed
to deteriorate unless there are strong justifications for a retrogressive measure. For example,
introducing school fees in secondary
education, which had formerly been free of charge would constitute a deliberate retrogressive measure. To justify
it, a State would have to demonstrate that it adopted
the measure only after carefully
considering all the options, assessing
the impact and fully using its maximum available resources.
Core Components of the Right to Health
The right
to health (Article
12) was defined
in General Comment
14 of the Committee on Economic, Social
and Cultural Rights
– a committee of Independent Experts, responsible for overseeing adherence to the Covenant. The right to health includes
the following four core components, which are often used to describe health service delivery.
Availability
Availability
of services requires that public
health and healthcare facilities are available in sufficient quantity, taking into account
a country’s developmental and economic condition. In low-resource countries, there are often
little
or
no
rehabilitation services
available. Where it is
available, rehabilitation is often
concentrated in urban centres or is delivered by NGOs which means the services
are not integrated into the local health service system.
Accessibility
The health system
has
to
be
accessible to
all. Accessibility has four overlapping dimensions:
1.
Non-discrimination
o
Health facilities, goods and services must be
accessible to all, especially the most vulnerable.
2.
Physical
accessibility
o
Health
facilities, goods and services must
be within safe physical reach of all parts of the population.
3.
Economic
Accessibility (affordability)
o
Health services must be affordable for all.
Access can be limited by expense, the need to pay out-of-pocket or long wait times.
4.
Information Accessibility
o
Accessibility includes
the right to seek, receive,
and impart information concerning health issues.
For example, governments must ensure that young people have access to sexual and reproductive health
education and information presented in an unbiased manner.
Acceptability
Acceptability requires
that health services
are ethically and culturally appropriate, i.e. respectful of
individuals, minorities, peoples, and communities, and sensitive to gender and life-cycle requirements. Rehabilitation services
must be ethically and culturally appropriate to the
populations they serve. Data of more than 280,000 service users over a 30 year
period found that
fewer
women
and
girls
attended rehabilitation across
all
health conditions. Further
research is indicated
to understand the exclusion of women and girls[2]
from rehabilitation services
as it affects their potential and has a negative impact
on their families and greater communities.
Quality
Quality requires that health services must be scientifically and medically appropriate and of the highest quality.
Underpinning the quality
of rehabilitation services
is evidenced-based practice.
Unfortunately, there is a mismatch
between where rehabilitation research is conducted, with relatively little being done in low-resource contexts. A 2020 systematic review of interventions for persons with stroke from low- and middle-income countries
found only 62 studies, 44 of
which were conducted in India. This exemplifies the lack of rehabilitation research carried out in low- and middle-income contexts. Another factor limiting the quality of rehabilitation is the inability to access meaningful research. This may be due to a lack of relevancy to the context,
articles/research may be blocked by a paywall
or there may be a language barrier
in terms of reading the research and translating knowledge.
Violations of Right to Health
Violations
or lack of attention to human rights can have serious health consequences. Overt or implicit
discrimination in the delivery of health services
– both within the health workforce and between health workers and service users – acts as a powerful barrier
to health services,
and contributes to poor quality care.
Violations of human rights not only contribute to and exacerbate poor
health, but for many, including displaced
persons, people with disabilities, indigenous populations, women living with HIV, sex
workers, people who use
drugs, transgender and intersex
people, the health care setting presents
a risk of heightened exposure
to human rights abuses, including
coercive or forced treatment and procedures.
ORIGINS OF HUMAN RIGHTS
AND HEALTH
In
1776, Thomas Jefferson, the third President of the United States (US), penned
these words: “We hold these truths to be self-evident, that all men are created
equal, that they are endowed by their Creator with certain unalienable Rights, that among these are Life, Liberty and the pursuit
of Happiness.” Centuries later, these
words are still echoed by American Presidents. In truth, since Jefferson first penned those words, it took another nearly
200 years for President Lyndon Johnson
to pass the Civil Rights Act in 1964, enabling the blacks to have equal rights
with the whites. Before this historic
event, many others had lost their lives fighting for human rights, the most prominent being President Abraham
Lincoln, who started the civil rights movement and won the war to abolish slavery.
With the formation of the United Nations
(UN), the issue of health and
human rights was brought
into sharp focus, with the UN
Universal Declaration of Human Rights
affirming the right of every person
to enjoy a high, attainable
standard of physical and mental health.
Human rights
and research
Doctors have always been thought of as healers and caretakers of the sick
and infirm. In ancient civilizations,
the medicine man was often trusted and respected, and even considered sacred in some cultures. The Holocaust during the
Second World War revealed a blatant disregard for health and human rights. The perpetrators were doctors whose practice of medicine was egregious,
outrageous and shocking. They not only violated the trust placed in them by
patients, but also committed
appalling acts against humanity. The most painful truth is that many of these doctors managed to eventually escape to
countries like Ecuador and Brazil, while the patients were left to suffer. The doctors of the Third Reich performed
various types of experiments on patients. I shall elaborate on a few of them.
Freezing or hypothermia experiments were conducted to simulate conditions
suffered by the German armies on the
Eastern Front, as thousands of German soldiers had frozen to death while fighting the Russians. These experiments
were conducted under the supervision of Dr Sigmund Rascher, who reported
directly to the police chief, Heinrich Himmler.
The results of the experiments were reported at a medical
conference entitled ‘Medical Problems Arising from Sea and winter’. The two main aims of the study were to establish:
(1) how long it takes to lower body
temperature till death; and (2) how to best resuscitate the frozen victim. Two
methods of freezing the body to sub-zero temperature were used: immersion
in an icy vat of water or standing
naked outside in sub-zero temperature. Naturally, most of the victims – young,
healthy Jews and Russians – died when their body temperature fell below 25°C.
Next, warming experiments were conducted to determine how to best
resuscitate frozen German soldiers.
The methods used for warming were equally cruel. Victims were placed under a
sun lamp to reheat their bodies. Most
of these victims died of burns, as their bodies were overheated. Another method was internal irrigation,
where water that had been heated to near-blistering temperature was forcefully
irrigated into the victims’ stomach,
bladder and intestines. Most died from such
cruel treatments. Other failed methods included hot baths and warming via body
heat or forced copulation.[3]
Another experiment was conducted on twin children by a famous doctor
named Josef Mengele. At Auschwitz, he carried out twin-to-twin transfusions, as well as stitching, castration and sterilization.
Many twins had their limbs and organs removed in macabre surgical procedures without anesthetic. The victims were
usually murdered when the experiment was over. Known to the children as ‘Uncle Mengele’, he was said to have brought
candies and clothes for the children whom
he later experimented on. Mengele finally escaped to Brazil, where he was never
caught despite international efforts to
track him down. He died in 1979.
Nazi doctors also conducted sterilization experiments to find cheap and effective ways of performing mass sterilization. The
experiments involved mutilating the genitals of thousands of inmates and injecting caustic substances
into the cervix or uterus of
women, which caused intense pain, ovarian inflammation and
abdominal spasm or hemorrhage. Men were subjected to testicular radiation and subsequently castrated
to ascertain the pathological changes
in their testes.
After the war, 23 German doctors were prosecuted in what was famously known as the Nuremberg
Doctors Trial. The trial lasted 140 days and the testimonies of 85 witnesses
were heard. Eventually, 16 doctors
were found guilty:
seven were executed;
seven were later acquitted,
as they did not actively participate in the experiments; and the fate of the
remaining two doctors was unknown. The
Doctors Trial gave rise to the Nuremberg Code, a set of ten ethical
principles for human experimentation, or what we would call ‘good clinical
research practice’ today. I shall briefly run through each of the ten points.
1.
Voluntary
consent is absolutely essential. Today, we have good clinical research practice
codes and agencies that supervise
research. Patients are able to exercise free choice without force, deceit or duress. Importantly, they should
know exactly what will happen when they participate in an experiment. Patients must also give their consent before
participation. It is also the duty and responsibility
of the person who takes the consent to explain exactly what goes on during the experiment and what consequences or harmful effects there might be.
2.
The
experiment should yield results that are fruitful for the good of society and
unprocurable by other methods or
means.
3.
The experiment should be designed and based on the results of animal
experimentation.
4.
The experiment should be conducted in a manner that avoids
unnecessary physical and mental suffering or injury.
5.
No experiment should be conducted
where there is a reason
to believe that death or disability will occur.
6.
The degree of risk should never exceed that determined by the humanitarian importance of the problem to be solved by the experiment.
7. There should be proper preparations
made and an adequate facility available
to protect the subject from injury or harm, should something go wrong.
8.
The experiment should be conducted only by
scientifically qualified people.
9.
During
the course of the experiment, the human subject should be at liberty to
withdraw. This is part and parcel of
taking consent today. In the United Kingdom (UK), besides informed consent, the subject’s general practitioner has to be informed of his or her participation.
10.
The scientist
in charge is responsible to stop the experiment or withdraw the subject and terminate the experiment at any stage,
if there is cause to believe
that continuation of the experiment could result in harm to the subject.
Human rights and clinical practice
Although there were improvements to the treatment
of human subjects
because of the Nuremberg Code, unethical medical
experiments continued even into the 1960s and ’70s. Between 1963 and 1971, the testicles of 67
Oregon and Washington state prison inmates were exposed to X-rays to determine the effects of radiation on sperm
production; the inmates were never
informed that exposure to radiation might cause cancer. From 1946 to 1956, 19
mentally retarded boys from a state
residential school in Waltham, Massachusetts, were given radioactive iron and calcium to gather information
about the metabolism of these substances; again, the subjects’ parents were not informed
about the radioactive agents. In 1956, subjects in an experiment conducted in Rochester were
injected with plutonium – some without consent and others without being fully informed. The results of this study
did not become public knowledge until
1993. Other ethically questionable studies included microcephaly experiments
where the skulls of intellectually
disabled persons were opened to allow the brain to expand, and the Willowbrook hepatitis experiment where 700 mentally
retarded children were deliberately infected with the most virulent strains of
hepatitis to determine the course of hepatitis and the effectiveness of gamma globulin immunization.
The
experiment that highlighted the full extent of the problem was the Tuskegee
Syphilis Study. This infamous study,
which was conducted with the approval of the US Department of Public Health, spanned nearly 40 years
(1932–1970) and aimed to study the natural history of syphilis among 600 black males. The subjects were
poor black cotton sharecroppers from Alabama, who were identified to have syphilis. The subjects were never told
that they had contracted syphilis, but
led to believe that they were receiving treatment for various illnesses. Although penicillin had already been identified as an effective cure for syphilis,
the antibiotic was withheld from the subjects.
As a result, at least 40 subjects died, and many of the victims’ sexual
partners also contracted the disease and their babies were born with congenital
syphilis.
This unethical experiment only came to light in 1972 and led to the
creation of another set of ethical
principles. While the Nuremberg Code focused primarily on patient consent in
research, the Tuskegee principles
included the care of human subjects in experiments (i.e. what should and should not be done clinically).
Essentially, the Tuskegee experiments violated the following human rights: the rights to life; health;
privacy; confidentiality; autonomous decision-making; to receive and impart information relevant
to the subject’s health; non-discrimination; freedom[4]
from human degradation; and to enjoy the benefits of scientific progress
(i.e. the discovery of penicillin as a cure for syphilis).
While the Nuremberg Trial gave rise to a code of ethical principles regarding the research aspects of experiments, the Tuskegee experiment led to a set of
principles regarding clinical services,
which was later embedded in the Universal Declaration of Human Rights: “No one
should be subjected to torture or to cruel, inhuman or degrading
treatment or punishment”. Furthermore, the statement is “non-derogable”, which means that “it
applies to all people, at all times, in all places” and
“cannot be negotiated away, nor sidestepped through pressure of circumstance”.
In 1964, the 18th WMA General Assembly formally adopted the Helsinki
Principles – a set of ethical
principles for medical research involving human subjects – in Finland. Since
then, the Declaration of Helsinki has
been amended several times. At the last amendment in 2004, it comprised 32 principles, encompassing both
the Nuremberg and Tuskegee principles mentioned earlier.
Human rights
and torture
The first aspect of human rights focuses on research, while the second
relates to clinical practice. There
is yet a third aspect – torture. In September 2014, Amnesty International
published a list of 141 countries
that still torture their prisoners
and suspects of crimes. Guantanamo Bay is one such example. By that time, most of the
prisoners held at Guantanamo Bay, Cuba, had already been released. However, some of the remaining detainees who went
on hunger strikes were being subjected
to force-feeding programmes. Some believed that force-feeding was carried out
to aid interrogation, as the
force-fed inmates would become so uncomfortable that they would give up the truth on interrogation. This was
challenged by the newspapers and the US government under George W Bush did not appear to have taken action. In 2016,
President Barack Obama was questioned
on his lack of action regarding force-feeding of hunger-striking inmates; he
finally took steps toward ending such practices.
With regard to torture, the WMA Declaration of Tokyo states:
“The physician shall not countenance,
condone or participate in the practice of torture or other forms of cruel,
inhuman or degrading procedures,
whatever the offence of which the victim of such procedures is suspected, accused or guilty, and whatever the
victim’s beliefs or motives, and in all situations, including armed conflict and civil strife.” Essentially, medical involvement in
torture can be distilled into a few
points. The first is that doctors should not be witnesses of torture. Second,
they should not have any therapeutic
involvement with the victims. Third, if there is forensic involvement, they must honestly declare
what has happened
with no attempts to cover up. Fourth,
they should avoid all complicity – intentional or
otherwise. Fifth, they should not participate in the design of torture methods. Finally, they must not actively
participate in torture.
One example of human rights and torture is the introduction of forced
medical involvement in judicial
amputations by Saddam Hussein. In 1994, hundreds of Iraqi doctors – led by the
director of Al-Basra Hospital and a
leading doctor from Saddam Hospital – carried out a protest strike against judicial amputations. The two
leaders of the strike were later executed for refusing to carry out what they deemed to be
unacceptable practices, while some doctors were arrested. Another example is the case of a
25-year-old student who was arrested for protesting in Brazil. He recounted that, while he was detained
at the barracks of the 23rd Riflemen’s Battalion, a medical officer had not only refused to medicate him even though
he was in pain, but also advised his torturers on which part of the body could be hit without leaving a
trace.
Dr Wendy Orr, a district surgeon at Eastern Cape, South Africa, who
witnessed the torture and abuse of
detainees in South African apartheid, said: “I was confronted on an almost
daily basis with some sort of
violation of rights of my patients, or some challenge of my own perspective on moral and ethical practice. I can
articulate that now, but at the time, I just felt uncomfortable – that things were not OK. I also felt
unsure of my own discomfort. No one else I worked with seemed to have a problem. We had never talked about these issues
at medical school. There seemed to be no place I could go to discuss
my concerns.”
What are Human Rights?
The
three areas we talked about –
research, clinical practice and torture – all involve human rights issues. There are multiple
dimensions to human rights – moral, legal, political and rhetorical,
and they are connected in complex ways to fundamental human good. Health rights are not that different from human rights, which can be thought
of as a normative legal framework that regulates
the relationship between the citizen
and state. They are often forged in opposition to various forms of tyranny. The basic
claim that underlies human rights is that each person has an irreducible moral status and can therefore
demand not to be treated
in ways that are incompatible with that moral status. These
claims can be made against a duty bearer, such as the state or an officer,
and they are universal.
The Geneva Conventions, which were ratified by 196 countries, generally
state that: no one shall be
punished for carrying out medical activities comparable with medical ethics; no
person shall be compelled
to perform acts contrary to medical ethics;
and no person shall be compelled to give
any information concerning the wounded or sick to any party where it would be
harmful to the person.
Rights-based approach to medical practice: ten competencies
For physicians to have a
rights-based approach to medical practice,
they need to have the competencies to apply the principles of
human rights to the daily practice of healthcare.(10) There are generally ten accepted competencies that the physician
should have. I urge physicians[5]
to take time every day to reflect on whether they have violated any of
these ten competencies in their practice
of medicine.
Right to life
Everyone
has the right to life. Ask yourself, ‘Did I do something that prevented the
person from death; could I have done
better?’ We also must consider the impact of the provision and denial of emergency healthcare services, and
evaluate how healthcare systems can ensure or compromise a patient’s right to live. For instance,
your juniors are treating a patient that is not under your direct care, but are you giving them the
necessary support to look after the patient well? Sometimes, we may be
indirectly denying someone the right to live.
Right to health
Everyone
has the right to the highest attainable standards of physical and mental
health. We must consider the impact of availability,
acceptability, accessibility and quality
of care in health outcomes, as well as assess the quality of health services
for diverse populations in the community. There should also be evaluation
of public health measures for screening of diseases to prolong life expectancy. In the US, Obamacare (i.e. the
Affordable Care Act) is trying to address
some of these issues, as some patients in the country are deprived of
healthcare due to a lack of funding.
Right to privacy
During consultation, examination and treatment of a patient in a private
space, physicians should act in a manner that ensures privacy and respect. For instance, the doctor should not be talking on the phone about another patient while
attending to a patient. Physicians should also recognize the need for a third party or chaperone to be present in some
cases. However, it is important that these
individuals are strictly instructed to keep the information shared within the
clinic setting private, especially when it involves
sensitive issues such as sexually
transmitted diseases, cancers, congenital malformations or donor
information in artificial insemination. There is also a need to acknowledge and accommodate varying cultural attitudes toward modesty.
Right to confidentiality
Physicians must maintain patient confidentiality and avoid unnecessary
disclosure of information regarding a patient’s health status. It is also prudent to communicate to patients regarding
how the clinic maintains the confidentiality of their written and
digital personal information. One should also carefully consider
the potential harm and benefit,
as well the laws regarding
confidentiality, before releasing a patient’s confidential information to a third party.
Right to autonomy and decision-making
This means that patients have the right to make decisions concerning
their own healthcare. Physicians need to acknowledge and respect this while considering the medical, social and cultural factors surrounding the patient’s
decision-making. The capacity of an individual at any age to give consent should also be evaluated. In the case of
young patients, physicians need to ensure
that the best interests and evolving capacity of the child are considered when
obtaining consent from children and
their legal guardians. The Royal College of Surgeons of England requires physicians to discuss with their
patients the treatment options available, but allow them to make the final decision based on this information. As patients are increasingly accessing health information on the Internet, it has
become a necessity for doctors to engage their patients in discussion about their health.
Right to information
Patients have the right to know the risks and benefits of accepting or
declining certain therapies, as well
as any alternative treatments available. Physicians need to communicate this
information to their patients in culturally sensitive
and understandable language,
as well as offer full disclosure
of test results, unless requested otherwise by the patient. It is also useful
to provide patients with literature
on the subject matter. In many UK hospitals, patients can key in a subject matter on computers
located in the hospitals and have the information printed
out at the touch of a button.
Right to non-discrimination
No one should be subjected to discrimination on any grounds
while receiving healthcare. Religious practices and societal and cultural roles should not impact a patient’s access to healthcare. Physicians should provide
optimal healthcare services
and establish mutually
respectful relationships with men
and women of all backgrounds and abilities.
Right to decide the number and spacing of children
Every woman has the right to decide freely and responsibly the number and
spacing of children, as well as to
have access to information and the means that enable them to exercise these
rights. Unfortunately, this is still
a major problem worldwide. In many countries, women do not have a say regarding their sexual and reproductive
functions. Ironically, decisions
on number and spacing of children are often made by the husband or mother-in-law. Globally,
maternal mortality is about
300,000 deaths per year. It is believed that maternal mortality can be reduced by 30% with contraception alone and by another 13% through the provision of safe abortion[6] care. Thus, it is imperative to provide women with preconception counseling, as well as comprehensive
information on and access to different methods of contraception and abortion,
in areas where it is legal.
Right to freedom from inhumane and degrading treatment
As physicians, we need to identify and assist victims of physical,
psychological and sexual violence or abuse, and act as advocates against prevalent
harmful practices such as female
genital mutilation, early marriage and polygamy. In the UK, doctors sometimes
encounter women who they
suspect have been sexually, physically or verbally abused by their husbands. In the presence of their husbands, these
women often keep silent, but it is our responsibility to find out. Sometimes we send the husband on
errands in order to have a chat with the patient. I ask the patient three questions. The first is
‘Have you been abused in any way, verbally or physically?’ If she answers in the affirmative, I would
follow up with the next questions, ‘Do you want to talk about it?’ and ‘Do you want any help?’ If I suspect that the
patient may have a psychiatric problem,
I ask another set of three questions: ‘Have you had any psychiatric problems?’
‘Do you feel hopeless?’ and ‘Do you
feel depressed?’ It is important that we identify the problems and help the patients as best we can.
Right to benefit from scientific progress
Physicians play an important role in ensuring that their patients enjoy
the benefits of scientific progress and its applications. We need to continually access and critically evaluate new information from a variety of sources, so
that we can inform patients of new evidence-based practices and medical therapies to effectively help them plan
their healthcare. In my travels, I have
observed that some senior physicians and obstetricians in many countries do not
see the need to attend continuing
medical education (CME) meetings. As a result, they are unaware of the latest medical
developments or surgical techniques. For example, a survey
that studied hospital episode
statistics was conducted
by the Royal College of Obstetricians and Gynecologists
(RCOG) during my presidency. One of the questions was on treatment for heavy menstrual
bleeding in women. In some hospitals, 80% of the doctors would perform hysterectomy on the patient, whereas only
20% of doctors in other hospitals would consider hysterectomy. Why is there a difference? It is because the
latter 20% are managing the bleeding with
simple Mirena coil, medication or endometrial ablation. The 80% who do
hysterectomy are those who do not
attend CME events; truth be told, some of these doctors may not have even heard of
the effectiveness of Mirena or
endometrial ablation, nor are they
interested to learn about these new techniques.
Controversy in Health and Human Rights
Whenever a medical problem arises in a case, there are five key questions that should be asked:
(1)
What
are the medical problems and health issues in this case? (2) What are the
threats to human rights posed by this
scenario? (3) How does the healthcare system support or infringe upon human rights? (4) What are the local
practices and regulations that affect the practitioner’s ability to deliver human rights-based patient care? (5) How
could this healthcare encounter be improved to respect human rights and ensure quality
healthcare? These questions
will be explored further.
Right to life: incomplete miscarriage
Incomplete
miscarriage is a common medical problem in many countries. In some countries where abortion is illegal, many women are
sent to jail because they are suspected of procuring an illegal abortion. However,
it is difficult to differentiate between spontaneous incomplete miscarriage and procured incomplete miscarriage. When a woman
presents to the hospital with bleeding
and incomplete miscarriage, the authorities tend to assume that she has done
something to induce the miscarriage.
In such cases, physicians must be competent to apply the ‘right to life’ principle
to their practice.
They should understand the impact of provision and denial of emergency
healthcare, and be ready to provide emergency lifesaving treatment independent
of their own personal beliefs. As
physicians, we play a part in improving the healthcare system so that it ensures the right to life for
every patient.
I shall illustrate this point with the case of SJ, a 21-year-old mother
of two from an African country. SJ
had walked 7 km to a local clinic to be evaluated for vaginal bleeding. She
knew that she was pregnant, as her last period was 14 weeks ago and
she also had the familiar signs of early
pregnancy such as nausea and breast tenderness. On the previous evening, she
had inserted some tablets into her
vagina to induce an abortion. The friend who had given her the tablets assured her that the tablets would cause
bleeding and make it appear that she was having her normal period. The nurse who attended to SJ performed a vaginal
examination and found what appeared
to be some retained products of conception in the vagina with an open cervical
os, as well as three white tablets,
which were identified as misoprostol. The nurse recorded SJ’s history and physical examination in a
handwritten note, and handed her an envelope with the note and a plastic specimen container with the three
tablets. She then called for an ambulance to transfer SJ to the district
hospital. Approximately two hours later, the ambulance
arrived and SJ was transported 100 km to the district
hospital. Upon arrival, the doctor reviewed the nurse’s notes, examined the tablets and asked: “Why did you murder your baby?” He then conducted a cursory examination and added a note, “Criminal abortion, suspected use of
misoprostol” to her records. Despite her profuse bleeding and rapid
pulse, the doctor called for another ambulance to take her to a provincial hospital that was two
hours away. SJ continued to bleed throughout the long ambulance ride and was pronounced dead on arrival.
Now, let us examine
the case carefully. What are the medical issues?
The patient had a miscarriage and was having active
bleeding. What is the appropriate management? Should the nurse or doctor have removed the products of conception or left
the tablets inside the patient? Is completing the abortion
against any religion or law, if it means saving a life? What are the health[7]
risks? The health risk of delayed treatment for incomplete miscarriage
was continued heavy bleeding, leading to death.
If you look at the case from the health and human rights point of view,
it is quite clear that the healthcare
providers had violated the patient’s right to life from the start to the end.
How did the response of each of the healthcare providers threaten the patient’s
right to life? Since the miscarriage
was already in progress and the patient was at risk of dying, the nurse could
have given the patient intravenous fluids and retained
the tablets when the patient
was being transferred to another hospital, because
the abortion may have completed if the tablets had not been removed. The nurse could also have inserted a finger and
evacuated the uterus – something all
nurses are trained to do as part of emergency obstetric functions in these
countries. The doctor did not show
any empathy to the patient. He could have done a number of things – start an intravenous line, administer antibiotics,
evacuate the uterus or perform lifesaving treatment. By doing nothing, both the nurse and doctor had essentially
mismanaged the patient and violated her right to life.
The question then is: how should the healthcare provider
reconcile his or her own beliefs with the
healthcare needs of the patient? Assuming that the patient had procured an
abortion and the healthcare providers
have certain religious beliefs, would they be doing something wrong if they had removed the products of conception
during an incomplete miscarriage? To complete an already incomplete miscarriage is lifesaving and not against the
law or one’s religion. Thus, it is important
to educate healthcare providers to differentiate between ‘initiating’ an
abortion and ‘completing’ an abortion.
This is not a problem faced only by African women. Every year, thousands
of Irish women travel to England,
the Netherlands and other nearby countries to get an abortion, because abortion
is illegal in Ireland. These women
usually come from more privileged backgrounds and can thus afford to do so. However,
the poor who cannot afford to go overseas for legal abortions
could end up with clandestine
abortions, where there is a higher chance of incomplete miscarriages and infection.
Health and Human Rights Advocacy
Professional organizations and individuals with high professional status can play a role in championing human rights. I developed an interest in health and human rights after I
moved from Singapore to the
UK in 1997. At that time, I realized that it is impossible to change things solely by teaching and doing clinical
work. To make an impact in healthcare, one has to get involved in ‘medical politics’. I had recently arrived in the UK
when the report on a confidential enquiry
into stillbirths and deaths in infancy was released in 1997.(13) As
my interest was in fetal
surveillance, the report immediately caught my attention. The report revealed
that in 1995, there were 873 cases of
intrapartum deaths beyond 34 weeks. All the infants, who died either in labour or soon afterwards, were normally formed with no congenital malformations, The report highlighted
that 50% of the deaths may not have happened if a different course of action
had been taken. The main issues that
were identified were: inability to interpret cardiotocograph traces; failure to incorporate clinical
picture; delay in taking action; and poor communication. I read the report and felt that something had to be done. So, a colleague and I started to give regular lectures to educate midwives and doctors on some of
these issues. They came, listened and read a book or two, but nothing
changed.
In 2007, UK Chief Medical Officer Sir Liam Donaldson raised the issue of
fetal deaths in the 2006 annual
report entitled ‘500 Missed Opportunities’. The report highlighted the tragic
deaths of 500 babies who had been
alive and well, but died at between 37 and 42 weeks of pregnancy. What went wrong? Globally, there are about
2.6 million stillbirths each year, and about 1.2 million of these occur during labour and birth. There is
undoubtedly an urgent need to invest more
money in intrapartum care – not only to increase the number of doctors and
midwives, but also to acquire
more equipment and increase teaching and training,
followed by assessment.
A study conducted to determine
the relationship between
the rate of fetal deaths and the presence/absence of a
senior doctor in the delivery
suite showed a trend of stillbirths and intrapartum
deaths occurring in the early hours of the morning when there were no senior
doctors attending to the births.(15) This is evidence for consultant-based
delivery services, as serious morbidity and mortality increase without the direct care and
supervision of senior doctors. Remote surveillance may lead to higher morbidity.
I shall illustrate this point using the example of a surveillance plane.
What would you do if you heard this announcement after boarding the plane: ‘I’m going to fly you to London
today, but I’m at home. My trainee pilot is going to
take you there instead.’ You would most certainly get off the plane. This is happening in medical care in the UK.
After 5 pm on weekdays, there are no senior doctors
around. During the weekends, from 5 pm on Friday
till Monday morning,
there are no senior doctors
around, although the situation is steadily improving. When something goes wrong with a patient, the junior doctor
telephones the senior doctor, who instructs him what to do, or he may say
something like ‘Please carry
on’. A junior doctor may be reluctant to admit
that he is uncomfortable with doing that procedure and may carry on
because he is the only person present to do it. Then something may go wrong.
To overcome some of these issues, during the time I was president of the
RCOG, I spoke to personnel from the Ministry
of Health and asked for more consultants in obstetrics and gynecology.
I showed some data and explained that without additional consultants, more
babies were going to die.
Unfortunately, there was a suboptimal response, so I approached a newspaper reporter
to write an article on this problem,
to be published before the Labour Party conference so that it would get people’s attention. The Observer published
the article, ‘The tragic human
cost of NHS baby blunders’. In the article, it stated that I did not
have a reputation for being outspoken
(which is true), but I had felt then that I needed to be a little outspoken,
given the dire situation. Eventually,
the government increased the budget at the time of implementation of the European
working time directive
and we received some funding
to increase the number of consultants. This is an example of
advocacy for babies’ rights, but what about the rights of women? Are they being addressed?[8]
Globally, about 300,000 women die from pregnancy and childbirth-related
causes. It has been reported that
about 30% of the women could have been managed by contraception, 15% by safe abortion care and 40% by emergency
obstetric care. In the UK, reports on confidential enquiries into maternal deaths, ‘Saving Mothers’
Lives’, are published every three years. The 2011 report showed that about 60%–70% of maternal deaths were due to
substandard care. Although the actual
number of deaths was very small and the numbers had dropped dramatically since
the 1950s, we still lose mothers to conditions such as cardiac
disease, thromboembolism, preeclampsia, postpartum hemorrhage (PPH) and amniotic
fluid embolism. The truth is, approximately 60% of maternal
deaths happened because
we were not doing our job properly; out of these 60%, the consultants were not in attendance some
of the time; they were either not told about the problem,
or they were told but did not go to the hospital to attend to the
case.
Around that same time, two incidents that highlighted the violation of
basic human rights in healthcare took
place: one in Northwick Park Hospital, UK, and the other one in University Hospital
Galway, Ireland.
Lessons from Northwick Park Hospital
I shall focus first on Northwick Park Hospital, which delivered 5,000
babies each year. There were ten
maternal deaths between 2002 and
2005. Of the 15,000 babies
born over the three years, ten women died. Based on the proportion of maternal deaths for the rest of the
country (i.e. one in 10,000), there
should be fewer maternal deaths (maybe one or two). A review was conducted on the ten cases of maternal
deaths. I was appointed by Rt Hon John Reid, the Secretary of State for Health, to chair the support team. We found a number of
failings on the part of the hospital, including a lack
of response to changes in the patients’ condition. A few things stood out in the review. The first was a lack of
consultant input, i.e. in six out of ten cases
there were no consultants involved. Secondly, there was a delay in informing the consultant of the patient’s condition in three cases.
Finally, there was a failure to recognise the severity of the patient’s problem. To sum it up, some of
the ten maternal deaths could have been avoided if the junior doctor had recognised the problem and informed the
consultant-in-charge, and if the consultant had been in attendance to manage the patient. The proportion of maternal deaths due to substandard care in Northwick Park
Hospital was similar to the confidential enquiries’ finding of 60%–70% of maternal deaths.
In 2009, the RCOG established a good practice guideline, ‘Responsibility
of the Consultant On- call’ as a
standard to improve women’s health. The guideline aimed to improve safety,
ensure quality of care and provide support
for trainees. To summarize, the responsibilities of the consultant on-call included: participation in labour ward duties to ensure safer childbirth; attending
to patients with conditions such as major PPH, ecliptic
fits and major placenta praevia, or on the trainee’s requests; and
being present for trial of instrumental delivery and complex or complicated labour/Caesarean sections.
This created a big commotion, as some were unwilling to abide by the recommendations. There was even a challenge to me
as president at the senior staff conference
during the president’s question-and-answer session. In response, I told the
senior staff that there was
sufficient evidence, based on confidential inquiries at Northwick Park
Hospital, of the need to bring about
this change, and I was not prepared to change or compromise the situation. In times like this, I think it
is necessary to be bold and to remain resolute in our stand if we are to provide care according to the
principles of human rights.
Establishing a guideline for the responsibility of the consultant on-call
was the first thing we did. The second thing was training
junior doctors to know exactly when to call in the senior doctors. We produced a chart, which is
used now in many disciplines, called the Early Warning Obstetric Care chart. The chart uses colour zones to mark deterioration in the patients’
conditions; the red zone is a signal to the junior doctor to call in the
consultant immediately. However, even
with the chart, things were missed. To further help the junior doctors, we
recently conducted a study to
establish the normal range for obstetric shock after birth, as an aid to estimate blood loss in PPH. With the
obstetric shock index or OSI, junior doctors could easily identify
a patient who is having PPH and needs blood transfusion.
We also established a clinical governance monitoring tool called a
Maternity Dashboard. This tool came
about because we noticed that doctors were unaware of what was happening to
their patients in their unit; there
was no departmental discussion and some doctors did not attend such unit discussions. Basically, the Maternity Dashboard
works like the dashboard of a car.(20) When
we are driving a car, we occasionally check the dashboard to see if the petrol
meter is down. When the petrol gauge
does not show a red indicator, we continue to drive, although it is still steadily going down as we drive.
When the meter shows red, we start to panic because we now need to get to a petrol station urgently. The problem is, we
are not bothered unless the meter is
red.
The Maternity Dashboard is a monthly chart that provides a powerful,
visible way of continually monitoring
and assessing how well the unit is functioning. It contains important
information such as clinical
indicators (e.g. type and number of maternal and neonatal morbidities);
workforce schedule (e.g. weekly hours
of consultant cover in the labour ward); and other departmental activities (e.g. booking schedule). There
is a threshold line or an average for each item. If an item exceeds the threshold, there is an amber
flag; if the item exceeds by two standard deviations of the incidence or the incidence exceeds the maximum threshold
value, it is reflected as a red flag. All
red flags have to be escalated up the ranks, including the hospital’s chief
executive officer. This problem may
reflect the need for more financial
resources to correct the problem. Items with
amber flags are initially managed by the department, and only get escalated if
they remain amber for up to three months.
Human rights issues are a major problem globally. In relation to women’s
health challenges in 2015, 289,000
women die in pregnancy and childbirth each year. One in three women is sexually or physically abused. 225 million women
have no access to contraception, and 800,000 die from cancers related to reproductive health.
There is also increasing maternal
mortality due to communicable
and non-communicable diseases. The top 20 countries that contribute to maternal and child deaths included Africa, India,
China, Afghanistan and Pakistan. China and India, with their large populations, naturally have high maternal and child
death rates. India produces about 25
million babies every year and there are an estimated 12 million abortions. It
would be a monumental task to tackle the problem in such a highly populated country.
So, what can we do as an international community?
One of the most important steps is to introduce voluntary family spacing
with postpartum family planning
programmes to communities with unmet needs for contraception. In some
communities, it is not uncommon to
see women with a nursing baby and several young children, because there is no access to contraception. After
giving birth, these women go home and are busy caring for their families, with no time or the means
to return to the hospital for postpartum contraception. Currently, a project is underway to introduce contraception to
large numbers of postpartum women in
six countries: Sri Lanka, India, Kenya, Tanzania, Nepal and Bangladesh. The
FIGO Project aims to institutionalize
the practice of offering immediate postpartum intrauterine device (IUD) services in hospitals. The programme
works this way: before a woman goes into labour, she is counselled regarding postpartum contraception and offered
the IUD services; if she gives her
consent, a copper IUD will be inserted once her baby and placenta are
delivered. This is a project that
most governments can afford, as each IUD costs about USD 0.40 and lasts for ten years. The
IUD is not only cost-effective and long acting, but is also reversible with high retention and low expulsion rates. Thus, if a woman decides to
have a baby three years later, the IUD
can be easily removed. It has been shown that a three-year family spacing
reduces the incidence of intrauterine
growth restriction, preterm births and infant mortality, i.e. it is a good thing to space out the family.
I shall turn my attention now to Obamacare, or the Affordable Care Act in
the US. In 2010, I was part of a
group that was invited to Boston to talk about the management of the UK’s
National Health Service.
About 52 million people in the
US were not insured for health in
2009; 13 million were in the
reproductive age group. The US Congress aimed to have 32 million out of the 52 million insured by 2019, which leaves
23 million still uninsured after the full implementation of Obamacare. Many American women are uninsured prior to
pregnancy, and may possibly have untreated
medical conditions. This poses a risk to the mothers and their unborn babies.
Based on salary scale, Medicaid was
available to citizens and residents if their annual income was USD 24,645 for a family of three; that is the
cut-off or poverty line. With the full implementation of Obamacare, 4.5 million women of reproductive age would have
become eligible for Medicaid in 2011, which should reduce
delays in receiving
prenatal care.
The US has a high maternal mortality, compared with Singapore and Japan.
There are currently many obstacles
to care in the US. Here are two examples.
A woman with five previous
pregnancies, whose immigration status was questionable, presented to the hospital with postpartum bleeding
and dizziness. When the patient felt better, she was turned away. At a second hospital,
she felt breathless, then bled and collapsed while her insurance was being checked. As it was an emergency, she was
immediately attended to and given treatment. She was discharged home three days later with no medication or
follow-up. Another woman who had no insurance and lived
in a remote reservation for natives died of
an undiagnosed heart problem after
giving birth to her second child. She did not receive any antenatal or medical
care, as the nearest medical facility
was two hours away. The problem in the US is that people with no insurance are often denied healthcare
unless they present with an emergency. So, if an uninsured person presents
with a ruptured appendix,
he or she would be given emergency
treatment. However, if it is
mild appendicitis, the person would likely be turned away without treatment. Maternity
care is no different.
Another emerging problem in the US is its rising Caesarean section rates
(20.7% in 1996 to 31.8% in 2007).
It has become the most common surgical procedure in the US. Vaginal
birth after Caesarean (VBAC), on the
other hand, has been dropping (35.3% in 1997 to 9.7% in 2006) due to fears of medical litigation in the
state of Maryland, any woman who has ever had a Caesarean section was automatically denied vaginal birth for subsequent pregnancies. This resulted in protests by women outside
the hospital, who demanded ‘evidence-based care’ and ‘bring back VBAC!’ After 18 months of protest, VBAC was finally
permitted. Another problem is the
practice of early elective Caesarean section at 37 or 38 weeks, again due to
medico legal issues. It is estimated
that delaying Caesarean section to 39 weeks could lead to savings of about USD 1 billion.
Thoraya Obaid, former executive
director of the United Nations Population Fund
(UNFPA), once said: “It keeps
startling me that at the beginning of the 21st century, at a time when we can… explore the depths of the seas and
build an international space station, we have not been able to make childbirth safe for all women around the world….
This is one of the greatest social inadequacies of our time.”
Abortion: a woman’s right?
Abortion
is a human drama. No woman would unnecessarily subject herself to physical,
mental and emotional torture. So, if
a woman opts for an abortion, she should not be treated like a criminal;
this clearly violates her right to non-discrimination.
In my birth country, Sri Lanka, abortion is a criminal offence, unless
the pregnancy puts the woman’s life
at risk. In 2006, UNFPA estimates that 600–700 illegal abortions are carried
out daily in Sri Lanka. If the woman
is wealthy, she could get a good
obstetrician to perform the deed
without public knowledge, but if she does not have the money and has no access
to a qualified obstetrician, the
abortion is usually clandestine. The majority of abortions in Sri Lanka are unsafe, as they are performed illegally
under septic conditions by under qualified
people.
[10]About
12% of maternal deaths are due to septic abortions. One can imagine the human
tragedy in such situations.
Generally, these abortions are done in women aged 35–39 years who already have children. About 15% of emergency gynecological admissions are for such types of incomplete abortions.
There was an attempt in 2013 to propose an amendment to the law on
abortion to allow for termination of pregnancy in special cases,
such as rape or incest
and congenital abnormalities that were incompatible with life. However, the Amendment Bill
was withdrawn by the then- Minister
of Justice and was not voted on in Parliament. Thus, the amendment to the
abortion law was not passed.
Savita Halappanavar, a dentist, was a 31-year-old primigravida who was 17
weeks pregnant. She presented to the hospital with a backache and
lower abdominal pain on the morning of 21 October 2012.
The healthcare practitioners examined her and found her to be well enough to be discharged. In the afternoon, the patient
noticed that her membranes were bulging out of her vagina, so she pushed them back in and returned to the hospital
the same afternoon. The doctor and
midwife checked her abdominally and vaginally, but did not use a speculum. They
did not notice any bulging membranes.
A full blood count (FBC) was ordered and the patient was hospitalized for observation. However, no doctor reviewed her
test results, which showed a white blood
cell count of 16,000. During the enquiry, when questioned why no one had
reviewed the patient’s test results,
the doctor who ordered the FBC, the ward doctor and midwife all insisted that it was not their responsibility to check the results.
The next day, a consultant examined the patient and found that her blood
pressure was normal with a pulse rate
of 95–100 bpm. Fetal heartbeat was present. The maternal pulse and blood pressure were supposed to be checked four
times a day at four-hour intervals, but they were only checked twice each day. By evening, the patient was having nausea
and vomiting, and was unable to eat. She was already septic by
then, but no one seemed to have noticed it. Her inability to eat was attributed to her preference
for non-Western food. When the patient’s membranes ruptured, she was put on erythromycin. In the early hours of the
morning, the patient was given extra
blankets, as she was feeling cold and had chattering of teeth. She continued to
feel unwell and had a pulse rate of
105 bpm. At that time, the house officer who came to check on the patient decided not to disturb her, as she was
asleep. A few hours later, her pulse rate increased to 160 bpm and there was a foul-smelling discharge. Fetal heart beat was still present.
The house officer started the patient on IV fluids and antibiotics, and
informed the registrar at three or
four o’clock in the morning. The registrar did nothing and waited for the
consultant to arrive at eight
o’clock. When the consultant arrived for the ward rounds, she was not informed
of the brownish, foul-smelling
discharge. As the fetal heartbeat was still present, the consultant continued
to observe her condition. On the same morning, the patient’s condition
rapidly deteriorated. She went into septic shock followed by multi-organ failure,
and died.
The Health Service Executive clinical review report was described by Dr
Reilly, the Health Minister, as “hard-hitting… spares nobody and doesn’t
pull any punches”. It identified
three main factors that led to Ms
Halappanavar’s death: (1) failure to adhere to clinical guidelines for prompt and effective management of
sepsis when it was diagnosed; (2)
failure to offer all management options;
and (3) inadequate assessment and monitoring.
In my official report, I had also included the statements, “The Irish
abortion law was a key factor…
Confusion about the Irish law was a material factor in this death….” In my interview with the press, I said that I would have terminated the pregnancy if an infection
had been found to be present.
When asked if the patient should have had a termination from a purely medical point of
view, I replied that termination should be made possible when there is a risk
to the health of the mother, as
distinct from her life. This is because even if the termination had been done earlier or not at all, the patient’s
health would have already been jeopardized by that time; she could end up with pelvic inflammation disease or tubal blockage.
The final outcome
of the enquiry was that medical recommendations, such as guidelines, induction, programme, ISBAR (Identify, Situation, Background, Assessment and Recommendation), escalation pathway, multidisciplinary team, were implemented. A change in
legislature was also requested for termination of pregnancy to be allowed if
there is an immediate threat to life
or permanent ill health. Eventually, the legislation was passed allowing termination of pregnancy for only immediate
threat to life. Although we have scored a point for human rights, my views are that the new abortion law will still
not prevent Savita-type of deaths because
infections can escalate rapidly and rampantly; one moment, there can be no
threat to life, but the patient could take a very bad turn within an hour. So, there is more that needs to be done.
Finally, I would like to end my lecture by introducing you to an
organization called The Global Library
of Women’s Medicine (GLOWM), for which I am the editor-in-chief. There is a
section called Women’s Rights, Health
and Empowerment. The GLOWM website provides plenty of useful information on health and human rights issues. Before I
end, I would also like to present the
SMA with three mementos: a book on the history of BMA; a handbook on the
medical profession and human rights
published by BMA; and a medallion commemorating the human rights
declaration of 1948.
In conclusion, human rights abuse in health happens every day, both in
research and clinical practice. As
healthcare practitioners, we need to be conscious of the ten health-related
human rights in our daily practice.
More importantly, we must not be a participant in human rights abuses.
If you are ever forced to participate in any inhumane activities, you should
seek help from national or international organizations. Finally, if you have spare time, consider volunteering for worthy causes in places
where people are deprived of human rights. Remember, it is the right of these individuals to enjoy good health.[11]
Resources
[1] https://www.physio- pedia.com/Human_Rights_and_Health#:~:text=As%20declared%20in%201948%20in,security%20in%20the%20eve
nt%20of
[3] https://www.drishtiias.com/daily-updates/daily-news-analysis/right-to-health- 3#:~:text=Fundamental%20Rights%3A%20Article%2021%20of,of%20the%20right%20to%20health.
[6] https://blog.ipleaders.in/right-to-health/
[11] https://humanrights.gov.au/our-work/education/introduction-human-rights