Article Type : Review Article
Authors : Jamal IJ, Pakianathan D, Mohamed MIP, Mohammad SNTS and Attalla S
Keywords : Ethical issues; Covid-19; Pandemic; Healthcare
During pandemics many exceptional regulations are planned to
facilitate risk management and ensure safety of the whole community. These
exceptional practices during the pandemic situation may evoke some issues with
ethical debate. There would be some limitations to patient’s rights and
confidentiality during pandemics. There are many issues in which the healthcare
provider should balance between ethical practice and the safety of the whole
community. The aim of this research is to highlight and discuss the ethical
concerns that may be faced during pandemic management in a trial to find out
the most appropriate practice in such times. In order to answer these dilemmas,
literatures were reviewed and discussed against the ethical codes. It is
concluded that during pandemic there are specific situational regulations and
guidelines to be followed in order to combat against the rapid infection
dissemination while maintaining professionalism and satisfaction to both public
as well to healthcare-providers. In conclusion, this study believes that there
must be a mutual understanding between these two parties that could be mediated
by legislative body or authorities to obtain the most effectiveness of the
healthcare system for combating pandemic.
A pandemic disease is that highly infectious
disease spreading from one person to another at a steady rate in a population
worldwide [1]. In the year 2020, the world has met with another outbreak that happens
to be devastating which is known to be SARS-CoV-2 or better known as COVID-19
affecting as much as 100 countries [2]. with death rates many as
154, 311 as of 18th April 2020 and when in comparison to past
pandemics as H1N1 and the Spanish Flu which has the death rate of 3,645 and 39
million respectively, the COVID-19 has the same lethality [3,4]. By the end of
March 2020, Europe has accounted for 56.4% of the total of the global cases
which exponentially increased by 319 times and at the same time, the American
and African region have 2,000 times increase in confirmed cases as well [5]. In
Malaysia, it started off as a small wave with 22 confirmed cases [6]. However,
the country was sent into a shocking second wave when 790 cases were diagnosed
in the span of less than three weeks and this has made the government to
implement what is known as Movement Control Order (MCO) as a means to curb down
the number of cases [7]. In the said order, the public was strictly not allowed
to travel interstate and only the head of family is allowed to leave the house
for grocery shopping within 10-KM radius hence a question raised here, has this
order gone against the basic human rights in freedom of movement? How does The
Siracusa Principle help in maintaining humans’ rights? In other spectrum,
General practitioners and nurses was advised to assess possibly infected
patients when they arrive at triage counters following Ministry of Health’s
risk assessment guidelines [8]. With a known infectivity rate and mortality rate,
must a physician or GP put themselves on the line treating this patient? What
is the limitation for a physician to risk their lives during a pandemic? When a
patient is confirmed to be diagnosed with COVID-19, what is the next step for
the physician? If cases of COVID-19 were found through Contact tracing, is the
patient's autonomy as well their confidentiality and privacy to be upheld? The
physicians of the detected cases must have breached this rule [9]. In pandemic,
a scenario where there is scarce of resource allocated could happen and at that
time, is it justifiable to serve doctors preferential treatment during this
time when an equal distribution should be practised [10]. This paper will
discuss an overview of the ethical challenges of patient rights and autonomy
that may face the medical practitioners during pandemic fighting. The issues
that will be touched upon will include issues related to patient consent to
examination and treatment
against mandatory testing and treatment, consent for research, issues
related to patient rights during quarantine.
This a
qualitative review study. The research engines utilized to collect data for
this study included Google scholar, Biomed central, Research gate and PubMed.
The collection of data targeted research papers published in scientific
journals and WHO generalizations during and after pandemics and including
experiences involving ethical or legal practices during pandemics. Terms used
as keywords included “ethical debate during pandemic”, “medical ethics of
pandemic”, “legal regulations during pandemics”, “patient autonomy and privacy
during pandemic”, contact tracing and patient privacy”. Then the references
were summarized in evidence table to extract the practice and point of view in
each research then the researches related to each of the discussed issues were
reviewed to extract its point of view and supporting evidence and lastly the
authors presented the different points of view and criticize each to reach a
conclusion regarding each of the studied issue.
Consent for examination and/or treatment
Autonomy is the patient’s rights to
think, decide and act on their own capability or assisted by the physician,
where the decision should be taken voluntarily by the patient [11]. Autonomy
usually convey as an individual’s rights to give consent regarding their own
healthcare. This is being enhanced more importantly in almost all the countries
since long time ago [12]. Informed consent is a legal procedure whereby
healthcare providers inform the patients about the risk, benefits and any other
alternatives before performing any medical interventions [13]. Furthermore,
physicians should be responsible in explaining and guiding the patient whenever
they performing any medical interventions. Failure to do this can lead to
unnecessary trouble to the patients as well as the health professionals [14].
Obtaining an informed consent aids in patient’s autonomy and secure them
from getting cheated or forced to make decision and support them to make
decision wisely [15]. ACOG Committee has proclaimed that informed consent is
the foremost concept of respect for patients which is associated with patient’s
autonomy [16]. Legally valid informed consent should include 4 components.
First, consent should be given voluntarily by a patient. Second, patient should
have the mental capacity to think. Third, disclosure of information to the
patient regarding own medical conditions and further progressions. Lastly, the
ability of the patient to understand the information given by the healthcare
providers [17]. According to medical ethics, health care providers have no
rights to treat or even touch the patient, it is considered as immoral, against
the law and can be punishable, without the patient’s consent unless it is
emergency situation [18]. During medical disasters like pandemic, do we still
need to get consent to examine patients or suspect cases to safe the community
from spreading infection? In cases of any disease outbreaks such as SARS, H1N1,
Ebola virus disease, Influenza and lately COVID-19, is it still ethically or
legally important to take consent during pandemic? In fact there is a debate that challenges to the healthcare workers in times of
pandemic. Several
studies confirm that informed consent still considered as important to obtain,
while some of the authors mentioned that it can be legally waived. During a
pandemic, the concept of autonomy should be evaluated according to the current
emergency situation. In such cases, the importance of patient’s autonomy becomes secondary when
compared to the patient's life [19]. Issues that challenge the health care
providers are patient’s informed consent, refusal of treatment and discharge
from the emergency department [20]. In such situations, even though a patient
has the right to refuse medical interventions, it may be in dispute with a
physician's duty to fight against disease during a pandemic. Physicians should
try to explain to patients regarding the disease complications and convince
them to receive treatment in order to reduce the consequences to the patient
and others [21]. According to WHO, it is compulsory for health care workers to
take informed consent from patients before carrying out any medical
interventions. Despite that, physicians have the right to overrule a patient's
autonomy to refuse treatment during an emergency situation like a pandemic
[22].
Mandatory examination and/or treatment
The role of informed consent can be
limited in emergency situations where consent seems to be impossible to obtain.
On top of it, numerous ethical responsibilities can also override the concept
of autonomy. For instance, if it is endangering the society and public health
during disease outbreaks. In such cases, mandatory testing and treatment are
important. Nevertheless, therapeutic benefits can also be a reason to revoke
the necessity to get informed consent from patients. In this situation,
physicians would always protect the patient's health rather than respecting the
patient’s autonomy [16].
Then, if autonomy is still compulsory in
emergency situations, is it possible for a patient to make a decision to accept
or refuse the treatment or any other medical interventions? In the worst case,
can others sign a consent form on behalf of the patient? As stated in the Code
of Medical Ethics, when a patient could not make a decision, then the physician
is responsible to choose the relevant or suitable person to make the decision
on behalf of the patient16. The representative can be the patient’s
family members, legal guardian or any individual appointed by the patient
earlier. The appointed surrogate should be explained well about the medical
interventions and help to make a wise decision. Appointed surrogate should make
a decision according to the patient's best interest and the urgency of
treatment for current health conditions [23]. Respecting patient autonomy means
physicians should bear in mind that they must respect the patient's decision as
well as her/his family's decision even if the decision overrides the patient’s
own [24]. A study about who should receive medical information and make medical
decisions, showed that 78% of respondents mentioned that it is essential for
patients, their families and also their physicians to join together to treat a
patient [25]. According to the World Medical Association (WMA), in emergency
situations or in the case of absent legal representatives, physicians should
decide what would be the best for the patient and proceed with the treatment in
order to save the patient’s life [26]. Patient’s freedom to make their own
decisions is the important challenge to health care providers who were
practicing paternalism or known as paternalism since years ago [20]. It has
been practiced traditionally by the physicians, where doctors will be
responsible in making decisions on behalf of the patients according to the patients’
needs, although he/she can make his/her decisions by own [27]. Croatia and
other countries still accept paternalism or in other words they are willing to
waive their autonomy and expect doctors to make decisions for them. They are
giving more importance to paternalism and beneficence compared to autonomy.
However, the concept of paternalism should not be dropped completely but it has
to be modified [28]. Also, the concept of paternalism is still followed by some
of the physicians as well as patients’ families in the aspect of beneficence in
few countries like the United State, Canada and Asia. In such communities, a
patient's family or family representative will be the decision maker on behalf
of the patient. This is because they consider family’s autonomy is much more
necessary and essential in managing a patient [29].
An intervention without valid consent can
only be accepted in cases where there is no other better option like
during a pandemic when it is necessary to further investigate the patient in
order to find out the cause of the disease. Health care workers or the
authority have to get involved in patient’s autonomy in compulsory screening,
treatment, isolation, quarantine, cases surveillance and informing it to the
authority during a pandemic. Even though it may infringe on basic human rights,
on the other hand it is useful to treat the patient and secure the society from
any harm [30,31]. Apart from this, physicians should also explain clearly to
the patient regarding the test, procedures, including the result,
confidentiality, diagnosis and whether the sample collected will be used for
any other reasons like research [32]. Prescribing medication in certain cases
can be clinically and ethically challenging. In conditions where approved therapies
are considered as ineffective or no approved therapies to treat due to the
patient’s medical condition, physicians should treat the patient in off-label
ways. In such cases, physicians must explain about the different treatment
approaches and get the patient's consent.
Patient autonomy during quarantine and
surveillance
During pandemic, a person should get
quarantine if infected or got contact with infected case. Should the person
voluntarily get him/herself to quarantine? Morally, it is their responsibility
to protect others from getting infected. In cases such as SARS, H1N1 influenza
and Ebola virus disease, mandatory isolation and quarantine have been enforced.
Forcing an unwilling person to do something for their own good or known as
“Beneficial coercion Paternalism” is deemed to be inappropriate in medical
ethics. Having said that, this should be implicated in emergency situations to
reduce the risk for the society as well as the person who is reluctant to do
so. Similarly, it is applied in cases of mandatory vaccination and treatment
during emergencies involving pandemic disease. Informed consent is only
required minimally in surveillance during medical disasters like pandemic
diseases. An individual can’t refuse to take part in surveillance since it is
officially conducted by the government. For example, in case of pandemic, the
health ministry or any health authorities might gather patients’ medical
information from the particular hospitals without getting the consent from
patients31. Even informed consent is not mandatory in executing
surveillance, as health care providers they should be responsible by providing
clear details to the participants. This is one of the ways of respecting and
gaining trust and support from society [33]. Language and cultural differences
are other challenges facing the patients in understanding the information given
by the health care workers to make an important decision independently [34].
Informed consent for medical research
during pandemic
Informed consent is a fundamental patient
autonomy and an important aspect in respecting a patient's refusal in any
unnecessary investigations, treatment or even research during a pandemic [35].
Informed consent should be legally and ethically necessary before conducting
research during disease outbreaks. Researchers should get informed consent from
the patients or participants or even from the appointed proxy decision-makers
before conducting a research during a pandemic [36]. On top of that, each
participant in a research should take part voluntarily where there must be
informed consent and complete explanation given to them such as the reason of
the research, details of the procedures, expected risks and benefits, and not
forgotten his/her autonomy on participating in the research. Meaning that each
participant has the rights to accept, refuse or withdraw from the research
anytime [37]. On the other hand, the Department of Health and Human Services
has concluded that the requirement of getting informed consent in a research
can be omitted if the possibilities of risk to the participants are considered
being less or no risk at all and if it is appeared to be troublesome in
obtaining consent [38]. Researchers can conduct the research without informed
consent and the waiving of the consent does not affect the participants’
rights, as long as they have sufficient idea on what they are going to do. In
such a situation, researchers should clearly show the importance of the
research, the balance between risk and benefits. Based on Canadian Institutes
of Health Research, researchers are legally allowed to omit informed consent
under specific circumstances. There are few other examples of research that
informed consent can be omitted. If the research induces, emergency situations
like disease outbreaks, if the patient is unconscious, and no appointed
representative to make decisions beside, nature of research or the types, such
as retrospective data collection and observational epidemiological research
based on the complete data set from a wide range of communities can be one of
the reasons for informed consent to be waived [39]. Conducting research during
disaster-like disease outbreaks is considered as improper but this can be
prevented if researchers manage to balance between the importance of research
and people's participation [40]. During emergency or disease outbreaks,
researchers should bear in mind that participants’ expectations might be higher
and this can lead to unwanted issues. Researchers should highlight more on
balancing between the number of participants and obtainable benefits to the
communities [41]. Is informed consent and research important during disease
outbreaks? Different studies show different points of view. It depends on the
researchers, how they conduct the research. A study shows that research on
identifying the virus during SARS outbreak was one of the contributions to
control the disease from getting spread widely [42]. Informed consent for any
research during medical disasters is important, although it can surpass or even
worsen the end result.
Limitations to patient privacy during
pandemic
Patients’
information and details regarding their health condition and patient’s personal
information are highly private and confidential which is between the doctor and
patient. However, during an outbreak, this information may be disclosed to the
public health in order for them to take appropriate measures to reduce the
disease spread and the emergence of new disease cases, but there is no evidence
to disclose these information’s to the public [43,44].
On
a physician’s perspective, it is believed that when the patients get to know
that their personal information is being shared with the public health
department, these patients may no longer be willing to give any information
regarding their health condition due to lack of trust [45]. There is a noticeable
change in attitude between patients towards doctors in order for them to
maintain their privacy. They do this by being dishonest to the doctors
regarding their current and past medical condition, buying medications over the
counter for self-treatment at home, seeking multiple doctors to get a solution
for a single problem that is by not disclosing numerous information regarding
their health condition to a single doctor and asking the doctor not to record
certain health conditions that they are suffering in the patients Bed Head
Ticket (BHT) records. This can later lead to numerous problems and confusions
to the public health when the review each case to find risk factors and cause
of a pandemic outbreak [46]. In an event of a pandemic, it is vital to allow patient’s
identity information to be shared with the public health when necessary without
delay as it is important for them to take appropriate measures in reducing the
spread of the pandemic. This personal information is to be kept within the
public health department and not to be revealed to the public. In any event,
whereby the information is needed to be shared with the public, it should be in
an anonymous manner such that patient’s data is de-identified [47]. Patients
are not asked for consent or permission before the physician discloses their
personal information to the public health, instead they are just informed so
accordance to law (Section 60 of the UK's Health and Social Care Act 2001).
This is crucial as the public health department can take necessary measures
such as contact tracing, disease notification, and disease control measures as
to protect the community from the infectious disease during a pandemic crisis.
This is ethical as it would benefit the community by helping them take
appropriate early measures such as social distancing, isolation and wearing
personal protective equipment’s [48].
Physician refusal of duty of care
It
has been noted that during pandemics, the second most affected group is the
healthcare workers. During 1918, the Spanish Flu has robbed 600 doctors whereas
the SARS pandemic has 813 doctor’s deaths from 8437 infected patients [49,50].
With this alarming rate of infectious and mortality? Is it reasonable for a
doctor to refuse to treat? Is it ethical or justified for a physician to
abandon their patient in crisis in order to save themselves or their family? Do
physicians truly have a moral obligation to treat during the times of pandemic?
To what extent should a doctor risk his or her own life? In what way would
doctors be compensated for putting their lives on the line? According to the
American Medical Association (AMA)’s code (1847), patient’s welfare should be
prioritized even if, in exchange, the physician’s health may deteriorate. This
was a standard ethical practice in the year 1918, this form of thought was
prescribed in the doctors are expected to resume their provision care to
patients without minding the risk of their health in pandemic crisis [51]. Some
believed that health-care workers must have a strong ethical obligation to
serve and accept hardship as it has been made known of the risk or dangers in
their profession when embarked in their career [52]. An example could be given
is when a firefighter that refuses to enter a burning home while wearing
full-protective gear is unacceptable as a treating physician who refuses to
treat a patient during pandemic when they have been protected by Personal
Protective Equipment (PPE) [53]. Without doubt that morbidity and lethality of
an infectious disease will inadvertently affect a healthcare worker in their
willingness to treat as an example that apart from the first cases in Vietnam,
all of the people who died were doctors and nurses [54]. A striking number of
2% of treating physicians in South Africa had passed in the midst of the
Pandemic occurring in 1918 49. In the United States, a random sample study was
done among the physicians in regards to their readiness to work in a
devastating and likely lethal infectious disease and it was found that 40% of
them were willing to put themselves on the bay to contract themselves in order
to save lives [55].
What if a healthcare worker refuses to treat a pandemic? To say that a
healthcare professional refuses to give treatment solely because it is a
pandemic would be generalizing when there are a number of factors contributing
to this refusal. It is acceptable for nurses to dismiss their duty during a
pandemic, this was stated by a professor in nursing in the United States [56].
It has been argued that the AMA codes do not gauge the physician to act during
a pandemic and the code published in 1847 could be view as unclear on the risk
that has to be taken by the physician during a pandemic [57]. hence many of
these physicians may fear for their own health as well as may have increase in
anxiety while treating patients in a highly infectious pandemic while
indirectly brings a dispute to a prima facie obligation towards their
non-clinical moral obligation (towards their spouse or children) [58]. In the
tandem of this reasoning, a study that was conducted in the Midlands, United
Kingdom shown that 74.1% who agreed with the statement “my main responsibility
is to myself and my family” were female respondents and this could be traced
back to the misogynistic characterises of the medicine field in whereby the
field was served by men whose main task is to provide income whereas the female
nurses were to leave the profession once they tie a knot hence there are
conflicts in moral obligation) [59]. In the spectrum of Non-maleficence as one
of the ethical pillars in the medicine, it is true that one who refuses to
treat a patient in hope to prevent further spread of the disease in the name of
minimising the risk to other patients or staff members are justified60 and a
similar finding was found in in a study conducted in Japan inquiring healthcare
personnel on the reason why they would not serve during pandemic is that they
believe their family might contract the disease through them 54.5%, followed
that they might become affected 49.5%, they will have to care for their family
members 27.5%, and they are not specialist 27.0% and lastly they have
inadequate energy to serve 24%. The second last is evident by physicians who
believed that they would not likely treat patients with avian influenza because
they believe that their speciality (obstetrics, surgery or rehabilitative
medicine) does not involve managing pandemic. But in the same study, about 10%
of medical professionals will not perform their duties in time of pandemic,
about 20% would perform their duty as usual and 30% will perform their duty but
not treating pandemic patients and 40% needed some conditions to be met. Of
course, while bearing in mind if a physician refuses a patient, this will plant
a seed in the latter to not trust in medical professionals, loss of status and
may inadvertently harm other healthcare workers so what is the way to overcome
this dilemma? A balancing test should be done when there is a pandemic on
determining the risk of a new pathogen is “significant” by the means of medical
evidence and consensus of the actual risk; the risk is not to be determined by
the physician’s own assumption and the physician should not withdraw his care
for the patient however, a physician may refer his patient to another expertise
who is well-equipped in knowledge to treat the patient. From another point of
view, regarding the anxiety that a physician may face during a pandemic, if
anxiety is the main cause for a healthcare worker’s absenteeism, it should be
approached with a manner that does not penalise the said worker but rather
persuasion should be instilled60. Some incentives can be applied during
pandemics to promote more physicians to treat their patients during pandemic
and this could be inclusive of (1) Personal Protective Equipment made available
(2) Providing vaccine and chemoprophylaxis (3) Infection control and protective
equipment are given training to medical workers (4) Giving them psychological
support and environment (5) Allowing to take leave for emergency plans (6)
Compensating their transportation to work (7) Providing lodging (8)
Compensating the workers in terms of financial for their risk and extra hours
(9) Benefits are given for sickness and death benefits (10) Standards of care
and liability protection is given (11) Triage teams that are independent and
objective-wise. There are few who agreed that healthcare workers who refused to
work during pandemic are punishable and could be answerable to law followed by
18.3% believed that individuals who do not work during pandemic should be
disciplined but a majority of number (29.8%) thought they should lose their
wage. On regards to the ones who worked during the pandemic, many respondents
believed that they should be gaining reward in the form of special priority if
they were to be infected by the pandemic virus (80.5%) and some believed they
should be reimbursed financially [60-63].
Ultimately, the
matter of human resources should be discussed among physicians and its
governing body in determining what are the limits while treating in pandemic
that may threaten the physicians’ own lives as they too have the right unto
their health.
Preservation of patient autonomy during pandemics is
greatly challenged for the safe of the community that make it necessary to have
on spot regulations and observations to keep the ethical medical practice.
Regarding patient consent during pandemic, it is concluded that it is essential
patient right that can be delegated to the physician during pandemic for the
both patient and community safety. Regarding the patient confidentiality, it is
concluded that it should be kept in all situations even if information has to
be reported to the health authorities but this never to allow bridging the
patient confidentiality to the public.